Real Talk: Eosinophilic Diseases

Co-hosts Ryan Piansky, a patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED's Health Science Advisory Council, interview Dr. Margo Szabo, a clinical psychologist with the Department of Child and Adolescent Psychiatry and Behavioral Sciences and the Division of Gastroenterology, Hepatology, and Nutrition at the Children's Hospital of Philadelphia (CHOP), and the Center for Pediatric Eosinophilic Disorders at CHOP.

Disclaimer: The information provided in this podcast is designed to support, not replace, the relationship between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.

Key Takeaways:

[:50] Co-host Ryan Piansky introduces this episode, brought to you thanks to the support of APFED's Education Partners AstraZeneca, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz.

[1:13] Holly introduces today's topic: the mental load of chronic disease, and today's guest, Dr. Margo Szabo.

[1:24] Dr. Szabo is a clinical psychologist with the Department of Child and Adolescent Psychiatry and Behavioral Sciences and the Division of Gastroenterology, Hepatology, and Nutrition at the Children's Hospital of Philadelphia (CHOP).

[1:37] Dr. Szabo provides psychosocial services to patients and families with eosinophilic esophagitis.

[1:47] Holly thanks Dr. Szabo for joining Real Talk: Eosinophilic Diseases today.

[2:08] Dr. Szabo has been at CHOP for about nine years. For at least half of that time, she has been fortunate to work with children with eosinophilic esophagitis (EoE) and other disorders.

[2:23] Dr. Szabo sees patients regularly for adjustment to a new diagnosis or changes in treatment regimen.

[2:40] Dr. Szabo has also worked with colleagues in psychology and social work to develop local support groups for patients and families. Dr. Szabo comments that APFED does a wonderful job at hosting national support groups.

[2:54] Dr. Szabo works to find ways to support these patients and their parents in dealing with a lot of complex emotions and complex daily tasks.

[3:24] Dr. Szabo wanted to be in the field of pediatric psychology because she was a patient at CHOP when she was a child. She wanted to be in the chronic health field.

[3:34] Dr. Szabo says gastroenterology allows her to use all her hats as a pediatric psychologist, with young children who may be struggling with constipation, and adolescents and children dealing with symptoms that keep them from their daily lives.

[3:55] Dr. Szabo works with kids with chronic illness to navigate that across different developmental stages.

[4:01] After Dr. Szabo had been in this job for a while, she was diagnosed with celiac disease. She now sees both perspectives, as a professional and a patient.

[4:12] Ryan mentions that so many of the eosinophilic gastrointestinal disorder (EGID) patient population also have other chronic issues they are dealing with. He says it's interesting to hear about the intersection of all those that Dr. Szabo sees in her work.

[4:27] Ryan asks about mental load. Dr. Szabo says that when we think about a chronic disease, there's often a lot going on behind the scenes that we may not see. People may have to take medications day-to-day, do treatments, or go to appointments.

[4:53] It's often much more than that. People with eosinophilic disorders might be dealing with insurance for getting new medications or formulas covered, scheduling regular endoscopies, or other things like that.

[5:14] They might be trying to explain this disorder to people they come across in their lives. Eosinophilic disorders, and many other chronic diseases, may not be visible, and so people may not understand why you need to see a physician or have a procedure.

[5:35] Somebody with a chronic disorder might be explaining what their disease means, and then advocating for support to make sure they're receiving the best treatment and getting access to the best care, but also to ADA accommodations at school or work.

[6:09] Dr. Szabo says we also think of that mental load as anticipating symptom flares or the need for more testing; what the future with a chronic illness might look like. There are a number of things that can weigh on people's minds.

[6:27] Ryan says Holly and he agree. Dealing with insurance, scheduling procedures, figuring out treatment options, and tracking symptoms, medications, and foods. There is so much that goes into managing any chronic illness, but EoE specifically.

[6:49] Ryan says that can take a toll. He feels sometimes that it's all building up and everything's happening at once. You have to get through many of these aspects in a relatively short period. That's always in the background in your day-to-day life.

[7:13] Dr. Szabo says that we know that all the stresses that come with a chronic disorder can activate our bodies' stress response system, which is designed to protect us when there are threats.

[7:26] Someone with a chronic disease might see these stresses regularly, such as scheduling a procedure, taking medications, and trying to explain the illness to others.

[7:40] When we are chronically stressed, when our system is chronically on, it puts us at increased risk of clinical anxiety disorders, clinical depression, and other psychological conditions. It can lead to cognitive exhaustion, overload, or health burnout.

[8:00] Dr. Szabo says she often thinks about chronic illness as being an emotional rollercoaster. Of course, there are highs, more positive times, such as when someone finds a treatment that works for them.

[8:13] But there are also low points, or twists and turns, when you have to do a lot of things at once, and you are feeling overly stressed, which might lead to clinical depression or feeling overly anxious. There are a lot of different ways it can affect us.

[8:28] Holly says it is important to bring this up. She was diagnosed as an adult, and she has another chronic illness that she navigates.

[8:38] Holly says, think about the caregivers and the kids. It is so important that they have access to a psychologist or someone who could help them create tools to manage some of these things as they're growing and getting older with the disease.

[8:52] Holly says a lot of her patients compare. "He can do this and I can't." "I can't go on the school trip because they can't make it safe for me." It's a lot of disappointment at times.

[9:06] Holly still gets upset at weddings if there's no food that she can eat.

[9:20] Holly says having programs that have someone who specializes in this diagnosis in chronic illnesses, especially, is massive for these kids to learn how they can have some coping mechanisms to move forward and be the best version of themselves.

[9:35] As a feeding specialist, Holly asks Dr. Szabo how she handles the food restrictions. There are so many eosinophilic diseases that involve an elimination diet and restricting foods. Avoiding foods can cause complicated relationships with eating.

[9:59] Dr. Szabo says food is such an important part of our culture. So many activities revolve around food or have food present. Most social events include eating and drinking. A lot of people she sees think about bringing safe foods or snacks to events.

[10:23] Dr. Szabo says if there's a birthday party or something happening at school, try to figure out what is being served so there can be a safe food alternative, so a child or adult doesn't feel left out in being able to enjoy and take part in the activity.

[10:46] Dr. Szabo says, of course, people can always choose to eat before or after an event if they feel more comfortable that way.

[10:52] Acknowledging the fact that it is a struggle to avoid these things can be helpful and freeing. Saying, "This is hard, and I can still find some ways to participate in these events. I can still find some foods or things that I enjoy." Think through that process.

[11:22] Dr. Szabo works with a lot of kids. She'll say to a patient, "OK, you've got a new food restriction. Let's do a taste test. Get five different kinds of gluten-free bread, dairy-free yogurt options, or ice cream options."

[11:47] Dr. Szabo says to have a star rating system and make it a little more fun, so it doesn't feel like "this really negative thing that I can't have that other people can have."

[12:04] Dr. Szabo continues, "I get to explore a little bit more with food and try to find something that I really like that's going to work for me."

[12:11] Dr. Szabo says sometimes kids surprise her by talking about special food options that their friends think look better than their own.

[12:28] Holly says her patients will often do food tastings. If they are anticipating food restriction, they will try things in advance so they will feel less anxious that they have an alternative to their beloved chicken nugget.

[12:43] Holly talks about removing a food from a child's diet temporarily, saying it causes harm to their body, and then reintroducing it months later to see if it is still a problem. It's a psychological struggle. It's hard to explain to a three-year-old.

[13:33] Dr. Szabo says she always takes things really slow. If they've been told that it's not a safe food, to add it right back into their diet, that would be hard for anybody. If I was off gluten for several years and told I could put it back in, I'd be hesitant.

[13:54] Dr. Szabo says to start slowly. Try having the food nearby. Then maybe having it on your plate and talking about how it looks, what it smells like, what it sounds like when you pick it up; all these ways to be present with the food before putting it in your mouth.

[14:21] Dr. Szabo says when she's working with kids, she's thinking about ways to reinforce challenging things. "If you're willing to try something that we know is really hard, can we do something fun afterward?"

[14:34] Dr. Szabo says, for younger kids, it's an external reward. For older kids and adults, it's working through "This used to not be safe for me, but now, I'm being told it is safe."

[14:47] Dr. Szabo continues, "My doctor would not be encouraging me to do this if they did not think it was safe for me. I'm here with a healthcare professional, in a feeding session, in a hospital. If something happened, I would be able to be taken care of."

[15:10] Dr. Szabo says those are some of the easier ways to start before introducing a food at home. Holly says feeding therapists like to use systematic desensitization before a food challenge.

[15:36] Holly says she feels it's important to be honest. A lot of caregivers feel the child is not going to eat it, so they have to sneak it in. That's ruining whatever trust the child has around food. Holly says preparing the food but not eating it can get rid of the fear.

[16:05] Dr. Szabo agrees with honesty. Sneaking foods in really can break that trust and make progress even harder, and increase fear and anxiety.

[16:16] Holly talks about her time working at a major children's hospital. Some kids like to look at their data. Because these numbers are better, my esophagus looks like this. We are going to try this as the next step. Holly says they are such good researchers.

[16:48] Holly says, during our annual conference this summer, we had a presentation on Avoidant/Restrictive Food Intake Disorder (ARFID). Holly asks Dr. Szabo how ARFID overlaps with EGIDs.

[17:05] Dr. Szabo says she sees ARFID in her clinical practice. Some types of ARFID are related to sensory concerns, like textures of food, or low appetite, or a gut fear of adverse physical consequences, like vomiting.

[17:34] Dr. Szabo says she has seen a lot of overlap between ARFID and EGIDs. A child may have had a past reaction to a food, so they may not want to try that food again. It may generalize. This yogurt made me sick, so I'm not willing to try any yogurt.

[18:21] Dr. Szabo says maybe they're cutting out all dairy after one reaction. From a nutritional standpoint, it's not great to be cutting out big categories of food. It can work into a place where we're concerned from a nutritional standpoint.

[18:31] Dr. Szabo says we want to make sure that medical concerns are ruled out before ARFID is diagnosed. Although these things can co-occur, we know that ARFID can be diagnosed when, actually, there may be an underlying condition, like EoE.

[18:55] Something medical may be going on to be causing food restriction. Before EGIDs were well known, some kids may have been diagnosed with ARFID when they had a medical condition.

[19:10] Dr. Szabo says it's important to have a thorough medical evaluation to ensure that comorbidity is in fact there.

[19:21] Holly says people labeled her growing up because she was naughty and maladaptive, but really she had eosinophilic esophagitis. They said she threw up for attention.

[19:45] For listeners, if you want to learn more about ARFID, we invite you to go to https://www.apfed.org/conference to watch the recording on this from the conference. It's a really good presentation.

[20:13] Ryan says there's a lot of uncertainty around symptoms and getting a diagnosis. Chatting with people at APFED's conference over the years, being able to put terminology around what's going on can be so helpful in your day-to-day life.

[20:46] Dr. Szabo says, getting that diagnosis can be a big emotional high because you have an answer. But there are always those loops and twists and turns. When is the next flare-up going to happen? Is this treatment working for me?

[21:06] Dr. Szabo says, particularly for some of these disorders, it can be hard. People might experience a flare-up, but sometimes even when they don't, it's still a struggle below the surface. Uncertainty can breed a lot of anxiety.

[21:36] You don't know what to expect. The fear of the unknown or fear of the worst-case scenario can lead people into a state of worrying and spiraling down an overly negative cycle.

[22:00] When we spiral down that worry cycle, we might start changing the way we interact with the world. We might be so worried about a flare-up that we might stop leaving the house. We're too concerned about getting contaminated at a restaurant.

[22:23] Dr. Szabo says we might stop being able to do our day-to-day things. We might stop going to our jobs, or kids stop going to school because they're concerned about having a flare-up or what people will think if they see them get sick or show a symptom.

[22:45] Dr. Szabo says worry can really have a significant impact on day-to-day life as well as someone's distress level. This can be one of the things that breeds a clinical anxiety disorder.

[22:55] Dr. Szabo says if you're avoiding things as a result of anxiety, being alone breeds mood problems and depression symptoms, leading to a host of psychological concerns.

[23:!6] Holly says she can relate to her patients because she has the diagnosis. This is something that is so tricky. Holly says we work on different strategies. She asks what some of the strategies Dr. Szabo offers her patients for their day-to-day lives are.

[23:41] Dr. Szabo says to recognize that the uncertainty is part of the picture. Not everything is going to be known. The willingness to recognize that uncertainty is there can be a huge first step.

[24:13] What are some ways you can have control in these moments? You may not be able to fully control whether a flare-up will happen or whether you're in remission or not, but you can set a goal to make sure you take the medication prescribed for you daily.

[24:38] You can set a reminder on your phone. A child can have their parents remind them. You can make sure you wash your hands after being around things that might contaminate your food.

[24:55] Thinking about those small ways that you can be in control when things are uncertain and scary at times can be really helpful. Asking for help can be huge, not just for children, but also for adults. Sometimes it helps to share with people how you feel.

[25:29] Dr. Szabo gives an example: "Yes, I did kind of feel left out when you didn't have a food option for me." People might not always know. "If possible, these are things that would work for me in the future and really help me feel part of the group." Talk to people.

[25:45] Holly brings up the word "burden." Try to reshape that you're not a burden. The people you surround yourself with don't feel that way. If you're around people that do, then they're not your people yet. It's hard to get a little kid to understand that.

[26:05] Holly says Dr. Szabo gave so many good suggestions to borrow.

[26:22] Dr. Szabo says she recommends her school-age patients with an EGID to consider a 504 Plan. It is a standardized plan and a legally binding document.

[26:39] It is to be distributed across a school so all teachers are aware of the student's medical conditions and the accommodations they are entitled to.

[26:50] A 504 Plan can take the burden off the child having to explain their disorder, why they can't have a food, or why they need to go to the nurse's office to get this medicine at a certain time, or access the bathroom at any time, coming up with a gesture for that.

[27:30] We shouldn't expect a child to advocate for themselves for all these pieces at a young age.

[27:50] Ryan says it's nice if your caregiver can establish with the school at the start of the year what's good for you. Ryan's parents brought in a bag of Dum-Dums to keep in the teacher's desk. If other people brought in treats, he had a safe treat to enjoy and feel included.

[28:14] Ryan says at a certain point his parents asked to have a mini-fridge in the classroom so he could tubefeed himself in the back of the classroom twice a day instead of having to take 20 minutes to go to the nurse's office.

[28:37] Ryan says it's impactful to have the caregivers advocating for the people in their lives with these chronic diseases. There's a balance. You don't want this disease to take over everyone's life. Ryan asks Dr. Szabo for advice for caregivers.

[29:04] Dr. Szabo says there are so many different ways to provide support. Don't assume that someone can't do something because of their chronic disease. You just want to let them be kids. Allow people that normalcy.

[29:24] Dr. Szabo says that with kids with siblings, some things will be a little different, but we shouldn't exclude them or assume they can't do something just because of their chronic illness. We should still offer the opportunities.

[30:11] Dr. Szabo says it's important to have normalization but also validation that things are hard for children with chronic illnesses.

[30:39] We recognize that this disease is present, and that it requires special treatment and appointments, but that doesn't mean it has to be the only thing we talk about.

[30:51] You are so much more than your eosinophilic disorder. You are amazing in and of your own right.

[31:12] Holly says sometimes getting that validation is massive. Ryan is glad Dr. Szabo brought up siblings. Ryan's sister wondered why Ryan could be tube-fed in bed, but she couldn't eat in bed.

[31:47] When Ryan was young, he had so many more foods he was avoiding. When they went out to eat, it was always a restaurant that was safe for Ryan. His sister wanted to know why Ryan always got to choose the restaurant.

[32:31] Dr. Szabo says anyone who's ever been on an airplane has heard to put on your own oxygen mask before helping others. Caregivers can't be effective helpers for their patients if they're not taking care of themselves.

[32:47] That includes not only sleeping and eating but also having time for themselves and having their own identity outside of the patient and outside of the patient's illness. Make sure that they can engage in their hobbies, get their breaks, and recharge.

[33:24] Sometimes family members struggle. Dr. Szabo would encourage them to find someone nearby to support and help out. If they're really struggling, maybe it's an opportunity for them to be involved in therapy to help them prioritize their self-care.

[33:50] Holly gives a shoutout to the caregivers because they do so much behind the scenes, which can feel heavy.

[34:30] Dr. Szabo says she usually thinks about two things when she thinks about whether someone needs professional support. She thinks about the level of distress they are experiencing. Are they depressed, angry, or frustrated more often than not?

[34:48] Are they feeling anxious? Are they worried so much that they are not able to stop it or control it? Dr. Szabo thinks about the level of impairment in their day-to-day life. Are they able to attend and participate in school or work?

[35:08] Dr. Szabo asks, are things with the chronic illness and their mental health starting to get in the way of attending those day-to-day activities? Are they no longer socializing or doing things they enjoy because of anxiety, a flare-up, or symptoms?

[35:26] Dr. Szabo asks if it is impacting their sleep, their eating, or any of those day-to-day things; those are signs that probably seeking some mental health help would be really helpful.

[35:37] Dr. Szabo says mental health support can look many different ways. She works specifically with children and adolescents. Her work involves not only the child but also the caregiver. Making sure the caregiver participates will help outside of the session.

[36:10] Dr. Szabo mentions supportive talk therapy where people share their concerns. She recommends evidence-based psychotherapy, which includes cognitive behavioral therapy, behavioral parenting for young kids, and acceptance and commitment therapy.

[36:32] A lot of these mental health therapies focus on not only talking about the things that are bothering you but also actionable skills you can put into place at home and in other settings.

[36:48] Ryan says it's so dependent on the patient and the caregiver, and everyone's situation is different.

[37:17] Dr. Szabo's last words of advice: Be kind to yourself. Feel compassion. With that goes acknowledgment of the struggle, and some normalization.

[37:27] Think about when you're having worries or critical thoughts; try to reframe it and ask, would I be saying this to a friend of mine or someone I really care about?

[37:41] Let's try to keep that same angle for ourselves. People might think I'm the one who's responsible for this flare-up, or I'm different from everybody else. There are a lot of pieces that are not in our control.

[37:55] We're doing what we can. We're doing our best. That's what I'll leave our people with.

[38:01] Ryan says that's such a good way to reframe it. It's a good thing to keep in mind when something is going wrong. Take a step back. It's OK. I need to make sure that I'm taking care of myself and not beating myself up and unnecessarily making it harder.

[38:18] Ryan says that's a nice message to wrap up on, so thank you for that.

[38:22] For our listeners who do want to learn more about eosinophilic diseases, we encourage you to visit https://www.apfed.org and check out the links in the show notes.

[38:30] If you're looking to find specialists who treat eosinophilic disorders, please visit APFED's Specialist Finder, which is available at http://apfed.org/specialist.

[38:38] If you'd like to connect with others impacted by eosinophilic diseases, please join APFED's online community on the Inspire Network at http://apfed.org/Connections.

[38:47] If you have personally been impacted by eosinophilic disorders and are interested in sharing your experience, please check out http://apfed.org/shareyourstory.

[38:55] Ryan thanks Dr. Szabo for joining us. This was a really wonderful conversation.

[39:00] Dr. Szabo thanks Ryan and Holly for having her. "I am so glad I got to share with you guys and got to hear about your stories."

[39:07] Holly thanks Dr. Szabo. That end note of being kind to yourself just really hit home. Holly thanks APFED's Education Partners AstraZeneca, Sanofi, Regeneron, and Takeda for supporting this episode.

Mentioned in This Episode:

APFED on YouTube, Twitter, Facebook, Pinterest, Instagram

Real Talk: Eosinophilic Diseases Podcast

https://apfed.org/https://apfed.org/specialist

https://apfed.org/connections

Eos Connection 2026

Margo Szabo, Ph.D.

Philadelphia Children's Hospital (CHOP)

Education Partners: This episode of APFED's podcast is brought to you thanks to the support of AstraZeneca, Sanofi, Regeneron, and Takeda.

Tweetables (Edited):

"People with eosinophilic disorders might be dealing with insurance for getting new medications or formulas covered, scheduling regular endoscopies, or other things like that." — Dr. Margo Szabo [4:58]

"Eosinophilic disorders, and many other chronic diseases, may not be visible, and so people may not understand why you need to see a physician or have [a] procedure." — Dr. Margo Szabo [5:22]

"We know that all the stresses that come with a chronic disorder can activate our bodies' stress response system, which is designed to protect us when there are threats." — Dr. Margo Szabo [7:13]

"Say, 'Yes, I did kind of feel left out when you didn't have a food option for me.' People might not always know. 'If possible, these are things that would work for me in the future and really help me feel part of the group.'" — Dr. Margo Szabo [25:29]

"I work specifically with children and adolescents. My work involves not only the child but also the caregiver. Making sure the caregiver participates will help outside of the session." — Dr. Margo Szabo [35:44]

"Be kind to yourself. Feel compassion. With that goes acknowledgment of the struggle, and some normalization. When you're having critical thoughts, try to reframe it and ask, would I be saying this to a friend or someone I really care about?" — Dr. Margo Szabo [37:17]

Guest Bio: Margo Szabo, Ph.D., is a Clinical Psychologist within the Department of Child and Adolescent Psychiatry and Behavioral Sciences and the Division of Gastroenterology, Hepatology, and Nutrition at the Children's Hospital of Philadelphia. She also holds a faculty appointment as an Assistant Professor of Clinical Psychiatry at the University of Pennsylvania Perelman School of Medicine. She earned her doctoral degree from West Virginia University with an emphasis in clinical child psychology. Dr. Szabo completed her residency and fellowship training in pediatric psychology at the Kennedy Krieger Institute and Johns Hopkins School of Medicine. Her clinical interests involve working with children and adolescents with gastrointestinal conditions to address symptom-related anxiety and mood symptoms, provide behavioral pain management, and improve adherence to medical regimens. Dr. Szabo has been working with the Center for Pediatric Eosinophilic Disorders at the Children's Hospital of Philadelphia to expand psychosocial services to patients and families with eosinophilic esophagitis over the past several years.

Website profile: https://www.chop.edu/doctors/szabo-margo-m

Co-hosts Ryan Piansky, a patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED's Health Science Advisory Council, interview Amarah, a high school senior and patient advocate living with EoE and several other chronic illnesses.

Disclaimer: The information provided in this podcast is designed to support, not replace, the relationship between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.

Key Takeaways:

[:48] Co-host Ryan Piansky introduces this episode, brought to you thanks to the support of APFED's Education Partners AstraZeneca, GSK, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz.

[1:07] Holly introduces today's topic: eosinophilic esophagitis (EoE). EoE is a chronic allergic inflammatory disease of the esophagus.

[1:19] EoE occurs when eosinophils, a type of white blood cell, accumulate in the esophagus in elevated numbers, causing inflammation that can make eating or swallowing difficult or uncomfortable.

[1:30] Holly introduces and welcomes today's guest, Amarah, a high school student who is a patient advocate living with EoE. Welcome, and thanks for joining us.

[1:37] Amarah thanks Holly and Ryan and says she is very excited to be here.

[1:50] Amarah says she is a high school senior. She loves to perform and act. She is also very involved in sports and school activities. She is a cross-country member and a soccer member.

[2:05] Amarah was diagnosed with EoE when she was very young. She has done every treatment you can think of. She has had foods that she was able to eat, and then she couldn't eat them, and then later she could go back to eating them.

[2:19] Amarah says it feels like she has had "millions and millions" of scopes. She has done transnasal scopes and regular scopes.

[2:28] Holly says she and Ryan have been on numerous types of therapy and tried diet elimination. Holly has done the transnasal scope and is excited to hear that Amarah has. Ryan says he feels left out and needs to try a transnasal scope at some point.

[2:52] Holly says we also call it a nonsedated endoscopy. Holly says she loves that Amarah has access to it. Amarah says her state is sparsely populated without those resources, so she flies down to Phoenix, where she used to live, for all of her doctoring.

[3:27] Holly says it's awesome for listeners to know that Arizona is a state where they can get treatment.

[3:47] Amarah says she had a wonderful primary care doctor when she was little. She was having problems around eight months old. At about a year-and-a-half, her primary care doctor suggested she be tested for this "new" disease, EoE. So she got tested.

[4:16] Amarah remembers "not being able to eat anything." That was her normal. She doesn't remember having to take out any foods. The first time she realized she had something more than allergies, she was around 5 or 6 years old.

[4:37] At that time, she realized that something was not the same with other kids who have allergies. What she had was different from a normal allergy.

[4:50] Amarah says she was about 10 or 11 years old when she had a better understanding of what EoE was, inside the esophagus.

[5:16] Ryan compares Amarah's experience to his own, as he was also diagnosed very young. For years, he explained it away as allergies. It's a complicated thing to grasp when you're younger.

[5:45] Amarah is on dupilumab, which is helpful for her eczema, which has resisted topical treatments. Dupilumab also helps with her EoE, so now she is able to have dairy, wheat, and soy. She can't eat them at the same level as people who do not have EoE.

[6:27] Amarah says she prefers a lot of foods that do not have dairy and wheat in them. It's helpful for traveling. She can eat dairy, wheat, and soy, and her scopes come back clean, which is nice.

[6:44] Amarah says that in the past she has done budesonide. She is on PPIs. She had Nissen fundoplication. She also did a drug trial. When she was 12, her EoE got bad. She did a drug trial for an IV drug, and it did not work. She had an adverse reaction.

[7:24] Ryan says he was taking a medication for eosinophilic asthma, which was helping his EoE a little bit, but not a lot. Now that he is taking dupilumab for EoE, that is also helping him with his eosinophilic asthma. Ryan agrees that it is such a game changer.

[7:58] Amarah says she doesn't have other trigger foods, but she is allergic to shellfish due to IgE, not EoE. Peanuts and tree nuts trigger anaphylaxis. Soy, wheat, and dairy are definitely EoE triggers. She used to have to avoid corn but is able to have it now.

[8:38] Amarah says you just know when you eat too much of a food, and your EoE is starting to act up again.

[9:15] Ryan advises listeners to double-check with your care team before you start to introduce triggers back into your diet.

[9:26] Holly says this is so relatable. Holly is significantly older than Ryan and Amarah and didn't get diagnosed until she was older. She loves how Amarah articulated the different paths she has been on as she was growing up.

[9:55] Holly notes that Amarah was at the rise of new treatments that could give her hope to try.

[10:07] Holly asks Amarah to explain to listeners the Nissen fundoplication. Amarah says she had it when she was about four, for her GERD, which is acid reflux. She says some kids with EoE have it done; some do not.

[10:50] Amarah says the sphincter between her stomach and esophagus didn't fully close. The doctor said he had never seen a sphincter look so bad.

[11:04] They did surgery to take a part of the stomach and sew it up so the sphincter closes when food goes down the esophagus, so it stays in the stomach. Amarah says you should not be able to throw up after the surgery, but she still has that ability.

[11:42] Amarah says the surgery can get looser over the years. She has had a couple of tests where the doctors monitor how loose it is.

[11:50] Holly thanks Amarah for articulating what Nissen fundoplication is. Holly is fascinated that Amarah is still able to vomit. That's an important thing to think about with EoE. Holly had the same procedure twice before they knew she had EoE.

[12:53] Amarah says EoE has a lot of layers. It's very complicated. It's very hard to describe it. It takes a lot of extra steps [to manage it].

[13:05] Amarah explains using another diagnosis she has: mild dyslexia. She has to put in more effort and work to do school assignments because she's in advanced classes that require a lot of reading, writing, and spelling.

[13:25] EoE is similar in the way that you have to have the extra steps in order to manage it. She wishes people would know that it's a multi-step process. It's not just one and done.

[13:38] Amarah has been looking at colleges. One of the things she is looking for is whether they have cafeterias she can use. Do they have a disability program she can use and get accommodations for her needs? Do they have a kitchen she can use?

[13:57] Amarah says even though she can have all these different foods, she is still anaphylactic to peanuts and tree nuts. Because EoE can randomly flare up, it's important to her that she has those options.

[14:11] Amarah says EoE is very layered, and she wishes people would understand that more. It would be more helpful for the level of acceptance and understanding, overall, of having EoE, especially as a teenager.

[14:34] Ryan says that when he started college, he sat with the university dining hall and the office of disability services to explain his EoE, EoE triggers, and anaphylactic allergies, and to ask if he could eat at the dining hall. They offered the salad bar.

[15:03] The dining hall couldn't accommodate his needs, so he was able to get a dorm with a kitchen so he could prepare his own food.

[15:18] Ryan hopes that 10 years after Ryan started college, the university Amarah chooses will be more understanding of EoE and other allergies.

[15:56] Holly says that as a speech pathologist, she sees people with all diagnoses. There are still schools that don't consider EoE a disability. It's very important to think about accommodations. A patient chose to change schools because of the lack of accommodations.

[16:36] Holly is 42. When she went to school, she didn't know she had EoE, but she had IgE-mediated food allergies, threw up often, and could only eat certain things prepared certain ways. The school said she could eat at one dining hall, but it still wasn't safe.

[17:00] Holly says it has changed in a good way, but in some places, it has not, because some people still don't understand.

[17:11] Holly talks about Amarah avoiding corn and different things. People don't realize you can have an EoE trigger to very different types of foods, not just ones that you are IgE allergic to and need an EpiPen® for. That was key information for Amarah to bring up.

[17:35] Amarah enjoys participating in her school's speech, debate, and drama team. She used EoE as the topic for her informative speech project. Holly watched a video of it, and it was amazing. Holly asks how Amarah came up with the topic.

[19:16] Amarah says that the previous year she had done an informative speech on the history of My Little Pony, of which she is a fan. She decided that for the next year she would do an informative speech on one of the six chronic illnesses she has.

[19:56] Amarah considered which of her illnesses affected her the most. She picked EoE to learn more about it for herself and to explain it better to others, more than just saying she has allergies and can't eat that.

[20:03] Amarah wanted to create something that would be digestible by everyday people for a basic understanding. She had 10 minutes for the speech, so she didn't get into the nitty-gritty of it. She really liked that she got to share it with people.

[20:24] Amarah says she met a judge whose brother had just been diagnosed with EoE. She met another kid who had EoE. He told her he never thought he would see somebody talk about EoE in an informative speech.

[20:50] Amarah says that sharing about EoE was important. She loved doing it.

[20:57] Holly says she loves that Amarah used an outlet she enjoys to share something medically significant in her life.

[21:14] Holly shares how her soccer teammates reacted when she had problems swallowing. She didn't know she had more than food allergies. She and her teammates did a drama, with her as a character always having to vomit. It was releasing to do.

[22:02] Amarah says the informative speech was extremely therapeutic for her. One of her best friends since sixth grade told her, "I had no idea that's what that was." Sharing it with people was very helpful for Amarah and, she hopes, for others.

[22:35] Ryan says it was cool that she was able to connect with others with EoE or with relatives with EoE. It is a rare disease, but people can get the diagnosis more easily these days.

[22:51] Ryan says the speech was only 10 minutes, but Amarah fit so much in those minutes, clearly and concisely. He was very impressed.

[23:22] Amarah says she used 10 sources for her research. APFED was one of her sources. She learned about the number of people who have EoE. It was interesting to learn the difference between the world rate of EoE and the U.S. rate of it.

[24:00] Amarah had not known it was equally common among everybody. Age, gender, and ethnicity do not matter. That was cool to learn.

[24:18] Amarah says it was sad to learn of the lack of public awareness. She learned that the average age of diagnosis was 35 to 50 years old because people aren't aware of it. That was saddening for her.

[25:38] Holly says it can be a missed diagnosis for a time, and it creates more inflammation in certain areas to make things worse. Holly wasn't diagnosed until she was 25. People just thought she was attention-seeking to vomit all the time.

[26:13] Holly says her primary caseload is mostly people aged 18 and up who are newly diagnosed. It's not young kids who are getting diagnosed, like when she worked at a major children's hospital.

[26:39] Holly says Amarah's speech was very informative and well-articulated. It was also dramatic, like a performance, while giving a lot of good information. Holly says it helps people retain information if they're captivated by the presenter.

[27:18] Amarah hopes her peers learned a basic understanding of EoE and some of the ways it works. She covered different treatment plans and food trials, which her peers don't understand until she explains them. That was important to her.

[27:47] Amarah says trying to figure out a way to describe a food trial to somebody who did not know took her a lot of rewrites.

[27:57] Amarah says her last paragraph was about public awareness, why you should care about EoE, and what you should know about it. It's becoming a more prevalent disease.

[28:31] Amarah says that having a basic understanding of EoE creates more acceptance. That's one of the things Amarah hopes to improve in the world.

[28:48] This year, Amarah is writing a Persuasive Essay on why disability should be more prevalent in media because of the level of diversity that it could provide.

[29:03] A lot of people, when Amarah tells them about her disability and chronic illnesses, say, "I am so sorry for you. I feel so bad for you. That must be awful. It must be absolutely horrendous for you."

[29:20] Amarah says these are sometimes the same people who say that they care, but then they do not accept her or her food allergies. They don't accommodate her. They still eat peanuts around her and refuse to wipe their hands.

[29:45] Amarah sees there is a big difference between acknowledging it and accepting it. She used the speech to show people the disability and disease of EoE, some reasons they should know about it, and why they should accept it.

[30:10] Amarah used self-deprecating humor, one of her favorite things to do. Amarah has also done quite a few stand-up comedy acts, which involve self-deprecating humor. She says it's a little bit of a way to cope.

[30:32] Amarah wanted to make something that people would engage in. If she stood up there with a monotone voice for 10 minutes, nobody would remember anything.

[30:41] Amarah says performing like that and having a space where she could show a little bit more of herself that she doesn't normally show to people was not only therapeutic to her, but she hopes that it showed people what EoE is.

[31:04] Holly says, "You just made me cry." It's a hard life lesson when you have chronic illnesses. Holly and Ryan understand that.

[31:20] Holly tells how important it is to her to see disability in the media, whether it's a patient in a medical show that has EoE, or a model in a brand-name ad that uses a cane, as Holly does for a different disability. It hits her in a way that's different.

[31:58] Holly says that seeing and hearing things in the media that are a part of dealing with her disabilities makes her feel included in a way that she never felt with some of her "closest" peers at the time.

[32:12] Ryan says it's wonderful that Amarah is doing this advocacy work through an outlet that she really enjoys and spreading that awareness outside some of these patient advocacy communities. Lack of awareness is an issue.

[32:30] Ryan says people care and want to be accommodating, but if they don't understand it and it's not being presented to them in a way they can parse through and fully understand, it's hard for them to make those steps to be accommodating.

[32:43] Ryan is glad that Amarah is continuing her advocacy work through the essay she is working on in the Speech and Debate Club.

[32:52] Ryan reflects on how great it was to have Amarah join as a patient panelist at the Annual Patient Education Conference, EOS Connection 2026, in Denver, and answer questions for a sizeable audience.

[33:08] Ryan says it was wonderful to see a high school student fielding questions. It was helpful for all the participants in the audience as well.

[33:27] Amarah says she absolutely loved it. It was wonderful. She loved hearing the other panelists' patient stories, and in general, hearing every other kid's experience with EoE. They were all different.

[33:50] Amarah enjoyed sharing her story and having a platform to relate to people. She remembers saying, "You know when your EoE is acting up because you can't eat rice. It starts to get stuck in your throat," and everybody in the audience started nodding.

[34:21] Amarah says having that relatability was helpful. She loves speaking in front of an audience, so that was great, too.

[34:33] It was a different format from the informative speech. Amarah says having to think on her feet meant she had to be more conscious of the words she was going to say. Her informative speech had a written, memorized transcript. Even her hand movements were practiced.

[35:22] Amarah says being able to talk about her biases with EoE and experiences she has had was helpful for her, and she hopes for other people, but very different from her informative speech, which is not supposed to be biased at all. It's not persuasive.

[35:48] Amarah says there were multiple times when she was writing her informative speech that she realized she could not put a sentence in it because it showed bias. She couldn't say, "you shouldn't be mean to people with EoE," for example. That's bias.

[36:21] Amarah says on the patient panel, she was able to do that. A lot of the experiences that she related on the patient panel were things she may have told her parents and some family members, but not anyone in her friend group.

[36:48] Amarah says sharing these experiences and how some of those events had made her feel or had impacted her was something she was not able to show in her informative speech. It was helpful to share her experiences on the patient panel.

[37:26] Ryan says, for our listeners, you can still access the patient panel online. We have on-demand content. We'll link to that in the show notes for this episode.

[37:36] Ryan says people can go back and watch that and hear from you and our other patient panelists. We had a great range of panelists up there. Ryan asks if Amarah learned anything that stuck with her from the panelists or presenters at this conference.

[37:52] Amarah says one of the patient panelists was talking about EoE in the workforce at her job. That was not something Amarah had thought about before. She found it really helpful and something that she will have to think about more in the future.

[38:13] Amarah met a teen who talked about his experiences of having EoE while being on sports buses and sports teams. Amarah found it helpful as she is on sports teams. The student told everyone on his team about his EoE. Amarah found that interesting.

[38:47] It gave Amarah some ideas on how to talk to people on her teams. Amarah just loved meeting all of the people at Eos Connection and learning about their different experiences and how she could improve some of her future experiences.

[39:10] Holly says a key point of the conferences is learning what's coming next in terms of treatment, diagnosis, and all the wonderful things you see health providers doing to support this diagnosis in the world.

[39:29] Holly says when you meet someone else who's going through a very similar experience, there is nothing quite like it. Holly talks about learning from the positive attitudes of other patients she meets at the conferences.

[40:12] Amarah tells EoE patients, "You don't have to tell people if you don't want to." She is a very private person when it comes to her medical stuff, especially during a flare or when there is something new happening.

[40:45] Amarah says she doesn't share it with people until she fully knows what's going on. "You don't have to share it with people if you don't want to."

[40:54] Amarah continues, "Granted, you should probably share your anaphylaxis with your teachers. 'Please don't bring peanuts in the classroom; you will kill me.' But you don't have to get into the nitty-gritty."

[41:06] Amarah continues, "You can just say, 'I have a medical disease. It affects me on a daily basis. I don't want to talk about it.' That is completely OK."

[41:17] Amarah continues, "You do not have to explain anything to somebody. You are not required to. You don't have to. It is your own body. It is your own choice when telling people things."

[41:31] Amarah continues, "It sucks sometimes, and especially kids with EoE, they may have a lot of other chronic illnesses, like me, where everything is combined at once."

[41:48] Amarah continues, "Once something flares up, then the other thing flares up. It sucks sometimes. And that is OK. It is OK that it sucks sometimes. You just have to get through it. You can't wallow in it, but you can acknowledge it."

[42:07] Amarah continues, "If you sit there and 'everything is fine, everything is great,' well, you know, you're actively having a reaction; it's clearly not. And that is something that I still work on today: pretending that everything is fine when it's not."

[42:26] Amarah continues, "You're not going to be perfect. I'm still not perfect. I struggle with talking to people, sharing my experiences, pretending that everything is fine even though I need help, or using self-deprecating humor when it's a serious problem."

[42:52] Amarah continues, "You're not perfect. That's OK.

[42:58] Ryan says that's such a good thing to keep in mind for the patients out there, that it's a journey. There are ups and downs. Finding your comfort level and maturing about the disorder, and keeping in mind that it's not going to be a perfect day every day.

[43:16] Ryan says, Amarah, I'm really glad you were able to join us on this podcast. It was so good to see you at the conference over the summer, as well.

[43:21] I think you're such a wonderful patient advocate. I'm so inspired to see you engaging so much with the community both at APFED and more broadly, speaking about your eosinophilic disorder through these other outlets that are meaningful to you.

[43:39] I know all our listeners are going to appreciate that as well.

[43:44] For our listeners who do want to learn more about eosinophilic disorders, we encourage you to visit http://apfed.org and check out the links in the show notes.

[43:50] If you're looking to find specialists who treat eosinophilic disorders, we encourage you to use APFED's Specialist Finder, available at http://apfed.org/specialist.

[44:00] If you have personally been impacted by eosinophilic disorders and are interested in sharing your experiences, please check out http://apfed.org/shareyourstory.

[44:09] If you'd like to connect with others impacted by eosinophilic diseases, please join APFED's online community on the Inspire Network at http://apfed.org/Connections.

[44:20] Ryan thanks Amarah for joining us. This was such a wonderful conversation, and I'm really glad that we were able to have this discussion today.

[44:27] Amarah thanks Ryan and Holly. "I do appreciate it. This was wonderful."

[44:32] Holly thanks APFED's Education Partners AstraZeneca, GSK, Sanofi, Regeneron, and Takeda for supporting this episode. Holly thanks Amarah.

Mentioned in This Episode:

APFED on YouTube, Twitter, Facebook, Pinterest, Instagram

Real Talk: Eosinophilic Diseases Podcast

apfed.orghttps://apfed.org/specialist

https://apfed.org/connections

Eos Connection 2026

Education Partners: This episode of APFED's podcast is brought to you thanks to the support of AstraZeneca, GSK, Sanofi, Regeneron, and Takeda.

Tweetables (Edited):

"I love to perform and act. I am also very involved in sports and school activities. I am a cross-country member and a soccer member. I was diagnosed with EoE when I was very young." — Amarah

"It feels like I have had 'millions and millions' of scopes. I have done transnasal scopes and regular scopes." — Amarah

"I remember not being able to eat anything. That was my normal. I don't remember having to take out any foods. The first time I realized I had something more than allergies, I was around 5 or 6 years old." — Amarah

"EoE is very layered, and I wish people would understand that more. It would be more helpful for the level of acceptance and understanding, overall, of having EoE, especially as a teenager." — Amarah

"Having a basic understanding of EoE creates more acceptance. That's one of the things I hope to improve in the world." — Amarah

Guest Bio: Amarah is a high school senior living in Montana. She has EoE and several other chronic illnesses. She loves public speaking and acting. A fun fact about Amarah is that she owns 14 wigs (she loves to create costumes).

Co-hosts Ryan Piansky, a patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED's Health Science Advisory Council, interview Timothy Buckey, MD, MBE, an allergy and immunology attending physician with a joint faculty position at the Hospital of the University of Pennsylvania and the Children's Hospital of Philadelphia.

Disclaimer: The information provided in this podcast is designed to support, not replace, the relationship between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.

Key Takeaways:

[00:48] Co-host Ryan Piansky introduces this episode, brought to you thanks to the support of APFED's Education Partners AstraZeneca, GSK, Sanofi, Regeneron, and Takeda.

[1:04] Ryan introduces co-host Holly Knotowicz. Ryan just returned from APFED's 24th Annual EOS Connection Patient Education Conference. It was a wonderful time. Listeners can still check out the resources on demand online.

[1:26] Ryan mentions that a handful of people came up to him at the conference to say how much they appreciate the Real Talk podcast. It was wonderful to hear how impactful the podcast has been for them.

[1:53] Holly introduces today's topic: how parents and caregivers can help children and teens with eosinophilic disorders build the skills and confidence they need to manage their health as they grow and navigate transitions from pediatric to adult care teams.

[2:06] Holly introduces and welcomes today's guest, Dr. Timothy Buckey, an allergist and immunologist at the University of Pennsylvania and the Children's Hospital of Philadelphia.

[2:14] Dr. Buckey's research interests include eosinophilic esophagitis, food allergy, medical ethics, and improving access to medical care for vulnerable populations.

[2:24] Dr. Buckey thanks Ryan and Holly for having him on the program. He's a long-time listener and is looking forward to the conversation on this important topic.

[2:32] Holly comments on Dr. Buckey working with children and adults. Dr. Buckey says he sees patients of all ages, from a few days old at the Children's Hospital through the end of life at the adult hospital. He loves that there's no patient he cannot see.

[3:10] Dr. Buckey says, in addition to seeing patients as an allergist/immunologist, he is also a medical ethicist or bioethicist. He is trained in medical ethics, and he utilizes that approach in shared decision-making, trying to understand his patients' goals and values for their health, and making a plan that works for them.

[3:31] Holly says her allergist/immunologist at Massachusetts General also sees teens and adults.

[3:53] Dr. Buckey says a special aspect of the relationship he has with his patients is that he has been in a fairly similar position, as someone who has dealt with many different allergic or atopic conditions for his whole life.

[4:08] Dr. Buckey says his conditions started with asthma as a young child, which he still manages, allergic rhinitis, and environmental allergies. He has been on allergy shots. He deals with atopic dermatitis, or eczema. He has seen an allergist/immunologist his whole life. It feels like full circle to be one now.

[4:29] Ryan feels like it's easier from a patient perspective if your physician gets it and can understand what you're going through.

[4:41] Ryan says that eosinophilic disorders generally require lifelong management, especially when diagnosed in children. Over time, a patient may need to transition from being treated by a pediatric care team to an adult care team.

[4:57] Ryan says that Dr. Buckey, through his work with the University of Pennsylvania, provides a lot of support for young adults going through that transition. Ryan asks Dr. Buckey to explain the importance of transition of care.

[5:14] Dr. Buckey breaks down the term into its two words: transition and care.

[5:24] Transition of care is a process in which we are shifting from a pediatric health model, in which a parent or guardian is the primary historian, or person managing the patient's care, to one in which the patient becomes the primary point of contact.

[5:49] Dr. Buckey says that during this process, our overarching goal is for an individual to begin to develop ownership of their health so that they can take care of their medications, schedule appointments, and know their bodies.

[6:05] Dr. Buckey says the second part is care. Not only medical care, but it is a period of life of going through a lot of personal growth. Dr. Buckey's goal is for patients to know themselves and learn to support themselves as independent individuals.

[6:30] Holly appreciates that Dr. Buckey talked about the transition at that age when there are so many things going on with becoming an adult.

[6:40] Holly says when she worked at the Children's Hospital of Colorado, we thought about this a lot.

[7:00] Holly said that when she interacted with patients, she tried to look at them, even if they were little. If they were three or four, she asked them what their favorite foods were.

[7:17] Holly says she was trying, as young as possible, to have them feel that they have some say and control over their health, and they can start developing how to be a historian of their medical journey.

[7:36] Dr. Buckey says every person matures or develops at different times. Having a strict age cutoff may ignore the unique aspects of each person and their history. Dr. Buckey generally begins that conversation in the teenage years through the early 20s.

[8:02] Dr. Buckey says that with some kids, he will introduce the idea earlier than a teenager, based on how much they understand about their health. As they start to switch to adult care, he emphasizes that the transition process is not over at their first adult visit.

[8:24] Dr. Buckey says it takes additional visits for that person to understand themselves, to know how to request a refill of their medication, to know how to make the appointment, and to know how to contact Dr. Buckey if they have questions.

[8:38] Dr. Buckey says it is a continual process, and it doesn't just stop at that first visit with an adult doctor.

[8:45] Holly agrees that people reach maturity at different ages. Holly remembers that when she was in college, she asked her mom to schedule her dentist and doctor appointments.

[9:17] Dr. Buckey says it's overwhelming and it can be quite scary. It takes a team.

[9:30] Holly notes there are age ranges on the Healthcare Transition Timeline Toolkit for what the provider should be doing to help the patient get ready for transition, and what the caregiver and the patient should be doing. She invites listeners to check it out at eoscare.apfed.org.

[9:45] Holly asks about ages when a child would meet alone with their physician for part of the appointment to talk about things they don't want to say in front of their parent.

[10:18] Dr. Buckey says it depends on age and individual factors. He says he has met some very mature 10-year-olds and some not-as-mature 17-year-olds.

[10:38] Dr. Buckey says he understands how it might be nerve-wracking for parents to ask them to step out, but it is an important part of that person starting to know their own body.

[10:50] Dr. Buckey says if he's seeing an individual with asthma, he will have the parents step out briefly from the clinic room so he can have a conversation about possible triggers they may not be comfortable talking to their parents about, such as vaping or cigarette use, and if they have tried them or friends have tried them.

[11:20] Dr. Buckey says they will discuss that, and that's not something they always feel comfortable sharing with their parents because they feel like they may be disappointing them. The doctor needs to know it to keep them healthy.

[11:44] Holly says in her practice, a lot of teenagers will ask to meet with her if they have IgE-mediated food allergies on top of eosinophilic-related disease.

[11:51] They want to know if it's safe to kiss a person if they've eaten this or what to do to protect themselves. If they get this symptom, what should they do? They feel comfortable asking Holly. She's trying to coach them to feel confident in their bodies.

[12:22] Ryan comments that he's gone through the transition of care process relatively recently. The conversation has touched on so many things he remembers from the last 10 years of trying to transition.

[12:28] Even before that, at eight or nine, when the doctor asked what medications Ryan was on, his mother looked at him and said, You should know this; you take them every day. What medications are you on?

[12:43] Ryan says that was super helpful to him, as a young patient, that his parents supported him in making sure he was aware of his health, his treatment options, and was able to guide his own medical appointments, with supervision.

[12:57] Ryan had had no idea that he was choking on food or taking extra time to chew. It felt normal, so it was helpful to have a caregiver in the office. His caregiver would say it takes him half an hour to have a handful of crackers. That should not be happening.

[13:20] Ryan asked about caregivers helping with appointment management and prescription management. Until recently, Ryan's parents helped him.

[13:50] Ryan says, even into your 20s, that transition process is still happening. Ryan asks Dr. Buckey for advice on teens and young adults making their own appointments and dealing with healthcare systems.

[14:04] Dr. Buckey says it's difficult to navigate our healthcare system. There are questions about insurance and what is in-network vs. out-of-network. How do you get prescriptions filled? What's covered? Cost? So it's complicated.

[14:21] Dr. Buckey emphasizes that when we're talking about this transition process, sometimes a part can get misconstrued: that we don't want parents or caregivers involved. We do.

[14:35] Dr. Buckey says his goal is for people to have the community, however they define that, to still be a part of their healthcare. What he is aiming for with this transition is that the individual starts to take control of their own health.

[14:50] If making appointments is something they still need some help from their parents, that is them recognizing what they need. [14:57] If they want to come to the visit but have Mom or Dad or their significant other on the phone, because that is the support that they need, then absolutely do that.

[15:08] Dr. Buckey says, as we are generally switching over, at 18 into our early 20s, recognizing the support you need is an important part of knowing your own body.

[15:20] Holly says that's an important stage, and she got there later. She needed help when she was younger; then, in her teens, she said, "No, I've got it." Now, in her 40s, she would like some help again.

[15:37] Holly says it's OK to ask for help when you're feeling overwhelmed, and you can't navigate all these chronic diseases on your own.

[15:42] Ryan says this is a topic we're both passionate about. At APFED, we see younger patients stop seeing their care team when they get to their college years.

[15:54] Ryan says part of it is they get busy and are not able to engage with the patient advocacy community as much, and part of it is they drop out of care. It's important to have caregivers or your community to support you through that process.

[16:07] Ryan says, whatever it takes to stay in care and make sure you're healthy is super important.

[16:14] Ryan brings up legal age cutoffs. In his 20s, he has access to his medical records; his parents don't. He still wants their take on some stuff. After he gets an endoscopy, he pulls up MyChart to show his parents his results.

[16:38] Dr. Buckey says once we turn 18, we are legally adults. At that point, the patient is the owner of their health and their information. They have to provide access to their parents to be able to see it. That can be done in several different ways.

[16:55] If you have an electronic health record, sometimes you can add a proxy, or you can just pull up the results and choose to show your parents.

[17:05] Dr. Buckey says if he is seeing an 18-, 19-, or 20-year-old at the Children's Hospital, he will tell them that once they turn 18, he only communicates results to them.

[17:16] Of course, they can have their parents, caregiver, or significant other present. That is their choice to invite them into that conversation. That is very helpful for many people.

[17:30] Dr. Buckey is a proxy for his parents. Holly is also a proxy for her parents.

[17:41] Holly says that having somebody who is in your corner to talk about your results with and talk about the next stages of treatment is always important because it can be overwhelming.

[17:51] Dr. Buckey gives kudos to pediatric providers. They are so wonderful, and they build such a great relationship that it makes it hard for us to want to leave.

[18:03] When Dr. Buckey was at the point of applying to medical school, his pediatrician told him they needed to have him see an adult doctor. He was reluctant to transition. His pediatrician inspired Dr. Buckey to go into medicine.

[18:25] Ryan says it can be a hard transition, with so much else going on that you want to stay in that familiar environment.

[18:31] Ryan shares how he recently dealt with transitioning insurance plans.

[18:55] Dr. Buckey says the general rule is that you can stay on your parents' health insurance until you are 26. There are caveats for individual persons and individual insurance plans.

[19:05] Some people start working and may get health insurance through their job, so you may have your own health insurance at 18 and no longer be on your parents' insurance.

[19:16] When you're 16 or 17, it's an important time to talk to your parents, or whoever's insurance you are on, about what's going to happen when you turn 18.

[19:26] Ryan says it's specific to each medical plan. He says when he went to college, he was offered a student health insurance plan, but his specialty medications, like biologics, were not covered, only hospitalizations.

[20:00] Ryan says it's always good to double-check what your plan options are and what those plans cover, to make sure that you're able to maintain the care you need.

[20:12] Holly says that something really helpful is to sit down with the family and help them identify an adult care team that will fit them best as they transition.

[20:33] Dr. Buckey says sitting down and having that conversation is an important part of the visit. Talk to patients about where they will live. If you're living away at college or moving away for a job, what geographic area are you moving to?

[20:53] If you're going to be on a different coast or city, do you want to switch your care over to that area? Or do you want to keep your care in the area where your parents live and come back during your breaks and see your physician?

[21:09] Dr. Buckey says it's also important to have a local provider to go to if something comes up. Talk to your pediatric provider about whether they know adult clinicians who care for the condition that you have in the area where you will be living.

[21:30] Dr. Buckey says another important thing to think about is, when we are in pediatric care, we are often follow-up or return patients. Visits may be of a different duration. Sometimes it's easier to schedule a follow-up visit than a new patient visit.

[21:48] Planning that new patient visit in your new area, sometimes weeks or months ahead, is an important part of this transition process to ensure that there are no gaps in the care you're going to be having.

[22:08] Holly mentions the APFED Specialist Finder on the APFED website. It's a tool for when you are not part of a multidisciplinary setting or wherever you're going, no one knows who they would recommend in that part of the country.

[22:25] There are a lot of good people listed on the APFED Specialist Finder if you are going to be moving somewhere else or getting your care in another place. Dr. Buckey proudly shared that he is on that Specialist Finder. So is Holly.

[22:51] Ryan recently moved to California, and he is trying to find care teams there that specialize in EoE.

[23:12] Ryan asks if patients transitioning to a new doctor typically need a referral from their existing physician, or do you chat with your insurance company first to help find new care teams?

[23:25] Dr. Buckey says some insurance policies do require a referral for each visit you are going to have with your provider. For many policies, you can look online to see who is in-network vs. out-of-network.

[23:52] Sometimes there are different costs to see someone who is in-network vs. out-of-network. The differences can be dramatic. Discuss it with your physician or clinician, but also with your insurance company.

[24:13] Dr. Buckey says make sure there's no lapse in care. We don't want someone to go without their medication. If you're no longer seeing your pediatric provider, make plans to see an adult provider who can continue your prescriptions.

[24:45] Ryan says we see a lot of patients who have an EGID and also other conditions. We see a lot of comorbidities within our community. We have multiple things going on, which can make this transition process especially complicated.

[25:15] Dr. Buckey says many people are experiencing different things and may need to see more than one clinician. They probably also have a primary care doctor. They are going to have to switch from each of those clinicians to an adult provider.

[25:38] That transition takes time and effort. It can sometimes be a long wait. Beginning that process early will only set you up for success. Dr. Buckey says different health systems will accept different insurances.

[26:01] Dr. Buckey says sometimes for specialty medicines, when you switch health systems, the specialty medication may be provided by a different specialty pharmacy than it was when you were seeing a pediatric healthcare team.

[26:13] How you schedule appointments, how you speak to someone if you're having new symptoms, all changes as you're switching to adult care. Dr. Buckey says because this is complicated, we do worry that sometimes things can get lost during the transition.

[26:37] Planning will only set you up for success, so that nothing gets missed in the switchover process; you have no lapse in medications or procedures that you need, and you can continue to see the clinicians you need to keep you healthy for your best life.

[27:03] Holly has learned from her healthcare and working in different hospitals to ask, before picking a specialist, what electronic medical records (EMR) the practice uses. Some can communicate with each other, and it makes the transition smoother.

[27:25] Holly says some places have EMRs that don't communicate with other places, and that makes sharing information tricky. Holly has experience dealing with EMRs that do not talk to each other at all.

[28:05] Dr. Buckey says if you use an EMR that communicates with others, your care can easily be accessed at different institutions. Dr. Buckey explains how that helps make the transition smooth if transferring to adult care or switching healthcare systems.

[28:56] Dr. Buckey says things you need for a helpful transition are to know your medical history, your diagnoses and how they were made, your current medications and dosing, and medications or therapies you tried before that weren't successful for you.

[29:31] Dr. Buckey says, as we approach the era of precision medicine where we are treating each person in a different way, knowing what did or did not work for you is so helpful for your clinician so they can continue to help you feel good.

[29:49] Holly suggests a role-play. For example, if she's going to see Dr. Buckey with her records from Maine, which do not communicate with his EMR. What should she physically bring to the visit?

[30:23] Dr. Buckey says to know what health conditions she is being treated for. In Holly's case, they will talk about asthma and EoE.

[30:33] Dr. Buckey would like to know if Holly has ever been hospitalized for asthma, what inhalers she takes, what inhalers she tried before, and if she is on any biologic medicines, the doses and the frequency, and what she tried in the past.

[30:53] Dr. Buckey would ask if she's ever had breathing tests, called spirometry or pulmonary function tests.

[30:58] Having paper copies is wonderful. You can bring them in, and he will review them at the visit. Dr. Buckey always appreciates it when patients send them to him ahead of time, so he can review them and prepare for a successful first visit for both of them.

[31:18] Dr. Buckey says if we're talking about EoE, he will ask when the diagnosis was made, what symptoms led her or her parents to do that first endoscopy or see an allergist, immunologist, or gastroenterologist, when the most recent endoscopy was, and what medications she was on when she had her different endoscopies.

[31:40] Dr. Buckey says usually clinicians are keeping track of this, so Holly could ask them for copies of procedures she has had, the last two or three office visits, which are usually pretty comprehensive, and a list of any medications Holly takes.

[32:00] Holly appreciates having the ability to send paper records in advance. When Holly sets an appointment, she will fax Dr. Buckey some of her tests and important facts to look at before her appointment.

[32:20] Holly says some places won't look at the reports in advance, so she brings a bullet list with her of all the things Dr. Buckey listed for them to look at when she checks in to the appointment.

[32:39] Dr. Buckey responds that healthcare is very busy and some clinicians don't have the time to look at reports ahead of the visit, but can take five or ten minutes to look at them at the start of the visit to be successful and have a comprehensive visit.

[32:59] Ryan appreciates Holly's point to bring a bulleted list to the visit. Ryan is grateful that his parents kept his records organized throughout his life. For any caregivers listening, set your patients up for success by keeping track of these things over time.

[33:24] Ryan has a one-page summary he gives to all new providers of all his hospitalizations over the last 20 years, the medications he has been on, with date ranges, his diagnoses with dates, and different procedures and endoscopies.

[33:46] Ryan says that one-page summary is in 6-point font to squish it down to one page. It's helpful to have all that information organized together.

[33:55] Ryan invites caregivers: If you have a young patient and you're starting to think about the transition process, start keeping track of all that if you haven't before.

[34:03] Dr. Buckey says our health can be complicated. We can have periods when we're feeling great and periods when we're having more symptoms. Having it written down is an easy way to keep track so things don't get forgotten or lost.

[34:22] Dr. Buckey often says he appreciates when patients come in with that sort of list of their history because it shows how invested you are in your health and keeping yourself healthy. It's a wonderful way that you can be proactive.

[34:40] Ryan says it can feel like a big undertaking if you start now and you're in your 20s. Whenever you can start keeping track of how you're feeling and why, what treatment and symptoms you're having, it's good to have more information than less.

[34:58] Dr. Buckey says there's never a period when it's too late. If you are in your 30s or 40s and just starting out, it's very helpful. The provider can prompt you with questions that will help you recall things you had in the past and add them to the document.

[35:21] Ryan says it's a very collaborative process. Discuss it with your clinician, who may point out symptoms you should note.

[35:40] Ryan asks, when you are transitioning from pediatric to adult care, is it typical for an adult care provider to call a pediatric care provider with questions? Dr. Buckey says in his system, doctors have those conversations, which is a great asset to patients.

[36:33] Dr. Buckey says, for example, if I were not their pediatric allergist, but I would become their adult allergist, I would reach out to their pediatric allergist and ask details about their history. I would also reach out to their dermatologist and gastroenterologist.

[36:59] It's helpful to ask each other questions, know things to look out for, or things in a person's history that might be helpful as therapies and medications continue to advance that might be a good fit. It helps us to have a good comprehensive plan in place.

[37:26] Dr. Buckey says talking to each other helps to provide good longitudinal care.

[37:39] Ryan asks about having procedures and allergy testing in a pediatric setting and switching to a new provider. Do adult providers typically want to repeat testing?

[38:04] Dr. Buckey says it will depend on each person, when they were performed, and what was performed. If Dr. Buckey is seeing someone for food allergies, was skin or blood testing done last year or 10 or 20 years ago? Last year is pretty current. If it was 20 years ago and you're 22, your body is very different from when you were two.

[38:40] Dr. Buckey says if you have asthma and you had a breathing test two weeks ago, that's very recent. If you have not had a breathing test done in 10 years, I probably would repeat it on your first or second visit.

[38:56] Dr. Buckey says, for endoscopies, if you have EoE of another EGID, it would depend on timing. Was this done recently or in the remote past? Was it done on the current regimen you are on? Was it done on a different regimen?

[39:14] Dr. Buckey says I'm going to ask you if you're having any changes in symptoms recently. If anything has changed how you're feeling, it's probably going to prompt me to do a new set of testing and not just rely on the ones you had before.

[39:31] Dr. Buckey says, if you could bring the previous tests to me, I can compare. I can see what your endoscopy looks like now vs. two years ago. It's helpful to have that baseline to compare to.

[39:48] Dr. Buckey adds that knowing how you're feeling, or what's been done before, or your medical history, helps clinicians to take care of you as best we can.

[40:15] Holly says this is such a needed conversation. It will be helpful for our listeners, both practicing physicians and patients.

[40:37] Holly asks what advice Dr. Buckey gives for navigating challenges during the transition of care.

[40:51] Dr. Buckey says for every new EoE patient visit, he shares a link to the APFED website because there are such wonderful resources and references there. He explains to them what APFED is, and he provides resources to other websites or research that he thinks is helpful for them, depending on what each person is looking for.

[41:31] Talking with your doctor about what you are looking for is very helpful.

[41:38] In terms of the transition process, it's an exciting period. We're often going through a lot of big life changes. It could be our first time living away from our parents, having a job, or going to college.

[42:05] Know your own health. Learn about your body. We are the best advocates for ourselves. Only you know what you are feeling. Only you can tell your doctor what you're feeling. Taking ownership of your health will set you up for success for a healthy, long life, achieving your goals. Holly says that sums it up beautifully.

[42:40] Holly says for listeners who are feeling overwhelmed, unsure, or want to find out more about the transition, http://eoscare.apfed.org is a great site that helps you navigate healthcare for eosinophilic conditions. It also has a tab for building a care team.

[43:05] Ryan says it's great when the guest plugs APFED resources! For those who are looking to learn more about transition of care, please visit http://apfed.org and check out the links in the show notes below.

[43:25] If you're looking to find specialists, as you're going through this transition process, who treat eosinophilic disorders, we encourage you to use APFED's Specialist Finder, available at http://apfed.org/specialist.

[43:36] If you would like to hear some recent sessions from the 24th annual Eos Connection conference, we had a session focused on transition of care. Those are available on demand online.

[43:50] If you'd like to connect with others impacted by eosinophilic diseases, please join APFED's online community on the Inspire Network at http://apfed.org/Connections.

[44:00] If you have personally been impacted by eosinophilic disorders and are interested in sharing your experiences, please check out http://apfed.org/shareyourstory.

[44:09] Ryan thanks Dr. Buckey for joining us today. It was such a great conversation. This will be so helpful for the community. Dr. Buckey says the work of this podcast and of APFED as a whole is so important.

[44:36] Dr. Buckey thanks all the patients and colleagues that he has. He has a job where he walks with a smile on his face every day. It's a privilege to take care of his patients and work with his colleagues. Thank you all for listening today.

[44:56] Holly thanks APFED's Education Partners AstraZeneca, GSK, Sanofi, Regeneron, and Takeda for supporting this episode.

Mentioned in This Episode:

APFED on YouTube, Twitter, Facebook, Pinterest, Instagram

Real Talk: Eosinophilic Diseases Podcast

apfed.orghttps://apfed.org/specialist

https://apfed.org/connections

http://eoscare.apfed.org

Eos Connection 2026

Timothy Buckey, MD, MBE

Hospital of the University of Pennsylvania

Children's Hospital of Philadelphia

Department of Medical Ethics and Health Policy

Healthcare Transition Timeline Toolkit

Education Partners: This episode of APFED's podcast is brought to you thanks to the support of AstraZeneca, GSK, Sanofi, Regeneron, and Takeda.

Tweetables (Edited):

"I am trained in medical ethics, and I utilize that approach, particularly in shared decision-making, trying to understand my patients' goals and values for their health, … and making a plan that works for them." — Timothy Buckey, MD, MBE

"During this [transition] process, our overarching goal is for an individual to begin to develop ownership of their health so that they can take care of their medications, schedule appointments, and know their bodies." — Timothy Buckey, MD, MBE

"Having a strict age cutoff may ignore the unique aspects of each person and their history. I generally begin that conversation [about transition of care] in the teenage years through the early 20s." — Timothy Buckey, MD, MBE

"Healthcare is very busy, and some clinicians don't have the time to look [at reports] ahead of time, but often, we can take five or ten minutes to look at them at the start of the visit … to be successful and have a comprehensive visit." — Timothy Buckey, MD, MBE

"We are the best advocates for ourselves. Only you know what you are feeling inside. Only you can tell your doctor what you're feeling. Taking ownership of your health will set you up for success for a healthy long life, achieving your goals." — Timothy Buckey, MD, MBE

Guest Bio: Timothy Buckey, MD, MBE, is an allergy and immunology attending physician with a joint faculty position at the Hospital of the University of Pennsylvania and the Children's Hospital of Philadelphia, and a secondary academic appointment in the Department of Medical Ethics and Health Policy. Dr. Buckey completed his allergy and immunology fellowship training at the Hospital of the University of Pennsylvania and the Children's Hospital of Philadelphia. He attended Georgetown University School of Medicine. He also received a Master of Bioethics from the Perelman School of Medicine at the University of Pennsylvania.

Several of Dr. Buckey's research interests include eosinophilic esophagitis, food allergy, medical ethics, and improving access to medical care for vulnerable populations. He was the lead author on one of the largest studies evaluating the rate of eosinophilic esophagitis during food allergy oral immunotherapy. Dr. Buckey was also the lead author on the pivotal 2024 food allergy study, which utilized allergist-performed oral food challenges to demonstrate there are no differences in food allergy outcomes based on race or ethnicity. Dr Buckey has also become a pioneer in investigating the intersection of medical ethics with allergy and immunology. Dr. Buckey developed the first comprehensive ethical framework for the specialty of allergy and immunology to assist clinicians with navigating ethically complex decisions in their clinical practices. He utilizes this patient-centered approach in the clinic when caring for patients with allergic and immunologic conditions of all ages.

Website profile: https://www.pennmedicine.org/providers/timothy-buckey

Co-hosts Ryan Piansky, a patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED's Health Science Advisory Council, interview Dr. Claire Beveridge about EoE and dysphagia.

Disclaimer: The information provided in this podcast is designed to support, not replace, the relationship between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.

Key Takeaways:

[:49] Co-host Ryan Piansky introduces this episode, brought to you thanks to the support of Education Partners AstraZeneca, GSK, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz.

[1:17] Holly introduces today's topic, research on eosinophilic esophagitis (EoE) and dysphagia.

[1:24] Holly introduces and welcomes today's guest, Dr. Claire Beveridge, a gastroenterologist at the Cleveland Clinic. Dr. Beveridge heads the EoE Adult Clinic and the Transition from Pediatric to Adult EoE Clinic.

[1:36] Holly, a speech pathologist, says she is very excited to dive into the research Dr. Beveridge did with EoE and dysphagia. Holly asks Dr. Beveridge to share some of her background.

[1:48] Dr. Beveridge was recruited to the Cleveland Clinic about five years ago to head the EoE Center. She loves the work they have done there.

[1:57] Dr. Beveridge says it's been nice to center everything on their EoE patients and have multidisciplinary care with speech-language pathologists, allergists, dietitians, pulmonologists, and more. It's been a great experience.

[2:15] Dr. Beveridge says the other thing they are really proud of is having a Transition Clinic. It can be tough for patients to transition from pediatric to adult care.

[2:23] Dr. Beveridge says this is something she was inspired to do when she was finishing her training at the University of Pennsylvania, where they had been doing some of that. It was really important to her when she joined Cleveland Clinic.

[2:34] Dr. Beveridge, with her Co-director, Dr. Sophia Patel, helps patients transition from pediatric to adult care.

[2:41] Holly speaks of the challenge of transitioning from pediatric care at a multidisciplinary clinic to adult care.

[3:08] Dr. Beveridge says you can't do any training at Northwestern without loving the esophagus. She did her residency there, got exposed to esophagology, and got to know Dr. Gonsalves and Dr. Hirano really well.

[3:33] Drs. Gonsalves and Hirano are really big names in EoE. Dr. Beveridge was fascinated by the disease. She loved the patients and wanted to help them and make them feel better. It's a burgeoning field.

[3:48] Dr. Beveridge says that it's only in the last few years that we have had FDA-approved medications for it, and that we have been jerry-rigging asthma medications to treat our patients.

[4:03] Dr. Beveridge says it's really exciting to see the treatment options we can offer.

[4:10] Ryan says it's exciting to see how EoE management has changed.

[4:16] Ryan says we see so many patients who are untreated or poorly treated for years, who have restructuring of their esophagus and present with dysphagia, or have strictures and rings leading to food impactions; the long-term effects of untreated EoE.

[4:34] Ryan says it's exciting that now we do have better treatment options for people, right off the bat.

[4:43] Dr. Beveridge conducted some research on EoE and dysphagia and presented a poster at the 2024 Digestive Diseases Week.

[4:51] The poster was titled, "Esophageal Luminal Diameter is Associated with Dysphagia and Eosinophilic Esophagitis: Implications for Endoscopic Dilation Therapy."

[5:11] Dr. Beveridge says dysphagia means issues with swallowing. It's a feeling of something getting stuck or something slowly moving down. There are also subtle symptoms that can happen.

[5:31] Dr. Beveridge says patients who have had EoE for a long time become accustomed to how they swallow. Things a patient may think are normal, like needing water and taking a sip after each bite, are learned accommodating behaviors.

[5:58] Dr. Beveridge says accommodating behaviors are that you're needing to imbibe extra water, you're modifying how you're eating, extra chewing, avoiding pills, avoiding other certain foods, and things like that that can be modifying factors.

[6:19] So, difficulty with swallowing, things getting stuck, slowly moving down, but also keeping in mind some of those modifying behaviors that we may end up using.

[7:23] Dr. Beveridge says her motivation was seeing patients in her clinic who were having persistent symptoms, and getting them into histological remission. The goal of treating your EoE is to get the eosinophils less than 15; close to zero is great.

[7:45] Dr. Beveridge says we have patients who, despite doing their endoscopies and taking biopsies, things look fine; they're still having issues with swallowing. Why is that the case?

[7:58] Dr. Beveridge says in a different research paper she had done, looking at some of the predictors for that, one of them was fibrostenosis. There are also other things that can contribute, like esophageal hypervigilance and a fear of swallowing.

[8:21] If a patient has had a food impaction, it's going to be scary to try to swallow again. Some of it is behavioral, but some of it is structural. At what luminal diameter (the size of the esophagus) is that causing a clinical problem for patients?

[8:45] A normal esophagus is 20 to 24 mm in diameter. Traditionally, around 14 to 16 mm in diameter has been when we say that patients get symptoms or they're feeling the issues with swallowing.

[9:03] Dr. Beveridge says a lot of those studies have never been done specifically for EoE patients.

[9:08] Dr. Beveridge wanted to know, if we exclude cancer, if we exclude acid reflux, and all of these other things, and just look at our EoE patients, what size of the esophagus are we looking at?

[9:20] Dr. Beveridge explained they specifically looked at patients whose histology was under control and then compared those who continued to experience symptoms with those who did not. The goal was to determine the histologic threshold at which patients begin to experience dysphagia.

[9:54] Dr. Beveridge says they saw this threshold at 16 mm (1.6 cm). That's still quite the difference from a normal esophagus of 20 to 24.

[10:08] Dr. Beveridge says our esophagus can definitely handle being smaller, but then, once you get to that 16 mm, for a lot of patients, it really does cause that feeling of things getting stuck or slowly moving down.

[10:20] Holly says what's cool about the retrospective data Dr. Beveridge looked at, and the parameters she placed in the research, is that when a patient goes in for an endoscopy, the doctor can measure and say maybe this is why dysphagia is going on.

[10:48] Holly finds that adult patients with food impactions are scared to eat the same food again. She loves having this data to share with patients and say, let's look at what your esophagus measures at. Let's do a smaller bite. Let's add a dip and liquid.

[11:12] Holly says data can push so much progress. Holly, having multiple chronic illnesses, loves when doctors can say, this is going to be safe. This is the mode that we're going to go with.

[11:30] Dr. Beveridge says in the retrospective study, they were looking at stuff that had already been done. We decided from here to assess patients more prospectively. All of this was based on chart review from when the note said symptoms or no symptoms.

[11:53] Dr. Beveridge says when she started this EoE clinic at the Cleveland Clinic, part of it was to standardize better how we were collecting data from patients to understand their symptoms.

[12:07] Dr. Beveridge has a standardized questionnaire for patients to understand if they are having heartburn and difficulty with swallowing, so she can know that at each point of their endoscopy.

[12:18] Dr. Beveridge says it will be nice, hopefully in the future, when she can give a little more detail and depth in terms of assessing this more prospectively and seeing if that same number holds up or if she needs to tweak it a little bit.

[12:34] Holly thinks it's fascinating. Numbers give us so much information, to know if my mm is this versus this, the next time, or during allergy season or not.

[12:53] Ryan says it's cool that you're able to look back at existing patient records and identify this information. Now we have that 16 mm number in mind to say maybe this is where we'll start to see increased risk of dysphagia in these patients.

[13:28] Dr. Beveridge says, how we had to do it retrospectively was based on the endoscopist estimating what the size is. Gastroenterologists recognize they're not always the best at estimating the size of the esophagus.

[13:50] Dr. Beveridge says, if your endoscope could not pass through, or it was snugly passing through, you know the diameter of the endoscope. If a dilation was done, at what size dilation do we start to see a disruption?

[14:19] Dr. Beveridge says, the goal of a dilation is to get a disruption because there's scar tissue we want to break open. A patient might think disruption means a perforation or something more scary, but that is the goal. We want to break open that scar tissue.

[14:42] Dr. Beveridge says, once we see that scar tissue break open a little bit, then we can estimate what the diameter is, based on the size dilator we used.

[15:10] Dr. Beveridge says for adults, we use a standard adult upper endoscope, and that's about 13 mm. The ones we use for kids are about 6 mm.

[15:35] Dr. Beveridge says the adult endoscope is around 13 mm, and it's around 14 to 16 mm when we start to see the symptoms.

[16:07] Dr. Beveridge says there are two main types of dilation that we do. One is the Savary dilator or wire-guided dilator, a long dilator that stretches the entire esophagus, from the mouth down to the stomach.

[17:20] Dr. Beveridge says another way of doing it is while you have the endoscope in, you thread a catheter. At the end of the endoscope, there's a balloon. You fill the balloon with saline up to different sizes. Typically, they go up by 3 mm, so 12 to 15 mm.

[18:01] Dr. Beveridge says the catheter balloon dilator is good for discrete strictures because the balloon isn't going to do the entire esophagus; it's just going to do one area of the esophagus, and you're watching it the whole time.

[18:19] For the wire dilator, you remove the scope. You're not able to see, so it's important to assess ahead of time how narrow things are, so you start at a safe dilation. You go in each time to see if there's starting to be disruption, and then you can do more.

[18:44] Holly asks if a gastroenterologist doing an upper endoscopy with sedation sees that it's tight, would the gastroenterologist automatically do a dilation? Or, can a patient with dysphagia symptoms request to have a dilation?

[19:28] Dr. Beveridge says, right before an endoscopy, she discusses it with the patient and gets consent. She asks, even if their symptoms are good, but in the endoscopy she sees a narrowing where she would recommend a dilation, if they're OK with that.

[20:05] Dr. Beveridge says, if they're having issues with swallowing, often she will ask if they're OK with her doing a dilation. If she sees a narrowing, she can focus on that area and dilate it.

[20:19] Dr. Beveridge says not everywhere in the esophagus can we see as well. The very beginning of the esophagus is challenging to see and challenging to evaluate on imaging.

[20:32] Dr. Beveridge talks about empiric dilation. You don't see a narrowing, but you want to rule it out, so you do a dilation at a safe size, like 16 or 18 mm, to make sure you're not missing something up high.

[20:58] Dr. Beveridge says she always talks about that with her patients. Most say, go ahead. Some patients definitely want dilation; other patients say no, they really don't.

[21:12] Dr. Beveridge then asks the patient if there's real narrowing that may cause a food impaction, would they want dilation then, or hold off for another day?

[21:30] Dr. Beveridge never wants to do something the patient is not comfortable with. She also doesn't want them to need another endoscopy unnecessarily, if she can avoid that for them in the moment.

[21:46] Dr. Beveridge mentions the BougieCap used in Europe. It's a cap you put at the end of the endoscope. You use your endoscope as the dilator. You watch the whole time. It is hard plastic that causes a nice dilation. We may see it come to the U.S.

[22:37] Dr. Beveridge speaks of the FLIP catheter, which is a catheter with a balloon that doesn't cause dilation but distends and helps measure the diameter.

[23:33] Holly asks if Dr. Beveridge gives tips to patients on how to prepare for dilation and the recovery process.

[23:49] Dr. Beveridge had an upper endoscopy. She says there's nothing like experience to understand it better. She didn't have a dilation, but the biopsies caused discomfort.

[24:21] Dr. Beveridge says a lot of her patients have been through upper endoscopies, so they know how it feels. She warns them that the biopsies and dilation can cause discomfort.

[24:33] What's challenging is that everyone is different. Some patients are going to be more hypersensitive to it, and other patients are going to say they felt nothing and they were fine.

[24:46] Dr. Beveridge says some patients need to modify their diet for a few days to avoid significant chest pain. You never want someone to have to go to the ER for significant chest pain when it will just heal over time, and there's no perforation.

[25:12] Dr. Beveridge says other patients will be like her, eating chips and pretzels and saying they're fine. Dr. Beveridge typically has them start with liquids, nothing too hot or too cold, and advance as tolerated.

[25:28] Dr. Beveridge says patients can always use TylenolⓇ and over-the-counter numbing agents. You'll still have patients who will get significant discomfort. For the most part, starting with liquids has worked for Dr. Beveridge's patients.

[25:44] Holly recommends over-the-counter when her patients call, after she talks to their GI. Holly says after she has an endoscopy, she starts on liquids and shakes. On day three, she's fine. Holly says individualized care is amazing. We all are different.

[26:14] In the pediatric setting, the parents get the counseling, and they have not had sedation, but on the adult side, you're talking with the patient, who had sedation. Sometimes they don't remember.

[26:40] Dr. Beveridge says when possible, she waits for family members to come back and tells them they're going to have to "be the memory" because the patient probably won't remember this conversation.

[26:55] If a patient says no, they don't want them to come back and hear about it, always respect that. But Dr. Beveridge always tells them, you may not remember what we say.

[27:30] Ryan asks about data on how many times someone may need dilations. Dr. Beveridge says it comes down to the patient, but the biggest issue can be uncontrolled inflammation.

[27:44] Dr. Beveridge says if a patient's EoE is not controlled, inflammation leads to continued scarring down. That's why we talk about dilation as being an adjunctive measure, but not a treatment for EoE. It doesn't do anything for the inflammation.

[28:03] Dr. Beveridge says she has patients who ask why she can't just do a dilation every now and then. Dr. Beveridge considers dilation to be safe when needed, but if you can avoid it, that would be nicer for everyone.

[28:21] Dr. Beveridge says there's no great data on whether you only need one, or whether you're going to need 10, but one big theme is just: have we gotten your inflammation under control? That's also true for other conditions, such as acid reflux.

[28:45] Holly wasn't diagnosed until she was in her mid-twenties, and she had several upper endoscopies as a teenager and college student to dilate her, to help the situation.

[29:17] Holly says she had to get more endoscopies to figure out her weird food triggers that are not typical for everybody, so even if she's treated, she still has inflammation. That's why she had so many upper endoscopies.

[29:30] Ryan talks about underlying issues causing inflammation. Dilation is not treating those underlying causes. It's just helping with one symptom of this dysphagia, by expanding the esophagus.

[29:50] Ryan asks, What changes in symptoms should patients expect after the dilation? Dr. Beveridge says, ideally, if there's been a stricture, you're going to start to feel like your swallowing is better. You can get pills and food down better.

[30:07] Dr. Beveridge says, immediately post-dilation, sometimes people feel a little bit worse. Everything you swallow may be uncomfortable for you. But if it's been a successful dilation, hopefully, you're going to feel that things are going down better.

[30:40] Holly says she is so grateful that Dr. Beveridge looked into this, and hopefully, there will be a new protocol in the future. Holly asks what other key takeaways from this research may interest Dr. Beveridge in researching something further.

[31:02] Dr. Beveridge says, making sure that we're not missing scar tissue is big and important. One thing that we're trying to look at with our Pediatric GI colleagues is what threshold we should be looking at for the pediatric patient population.

[31:19] Dr. Beveridge says a pediatric patient's esophagus is a different size than an adult patient's. Understandably, we are more cautious when doing a dilation in the pediatric patient population than we are with adults.

[31:34] Dr. Beveridge may recommend empiric dilation for an adult but will feel more cautious about that with pediatric patients than with adult patients. Understanding what that threshold should be for the pediatrics is going to be really interesting.

[31:57] Dr. Beveridge says the diameter threshold we discussed is going to be important to know about, but everyone is different. You may have a diameter of 14 mm, you feel fine, and you don't want a dilation; you can accommodate OK. That's reasonable.

[32:15] Dr. Beveridge says she has had patients who get up to 18 mm, and that helps them, but they need a little bit more. If someone needs more of a dilation, we do that. Yes, have a threshold to assess, but always assess for what's personal for your patient.

[33:04] Dr. Beveridge says not just to assess the luminal diameter, but a thing that is helpful for gastroenterologists to know will be if there are other factors at play. As in her study of dysphagia predictors, anxiety, depression, and hypervigilance can play roles.

[33:37] Dr. Beveridge has patients who have to have a critical narrowing for them to finally feel an issue. Other patients, if they have the slightest of narrowing, are feeling something. Some patients are just more vigilant of what's happening in their esophagus.

[34:07] Dr. Beveridge says there's definitely a role for asking if your anxiety is under control. If there's feedback in the nerves, should we ask your GI Psychologist to be involved in terms of CBT for your esophagus? Take a look at everything.

[34:27] Dr. Beveridge says another part of the study they looked at was: are there different thresholds of eosinophils that we should be looking at? Is it just less than 15, or do some patients need it to be lower? Less than six? Less than 10?

[34:43] Dr. Beveridge says look at it as a whole for your patient.

[34:53] Dr. Beveridge says next, she will be working on a very long-term project: Can we identify a non-invasive method of screening a patient, diagnosing a patient for EoE, or monitoring a response to therapy?

[35:13] Dr. Beveridge has looked at transnasal endoscopy, which is put into this category of minimally invasive. It's still invasive; you're putting a scope through someone's nose, but it doesn't require sedation, which is a nice thing for some patients.

[35:29] There's the EnteroTrack, which started in Colorado. A patient swallows a string, and it stays in their esophagus for an hour, and we look at the proteins to see if things are active or not active.

[35:45] Dr. Beveridge is also looking at the breath metabolome. If we breathe into a bag and take a look at all the volatile organic compounds that are in our breath, can we find a signature related to EoE?

[36:01] It's assessing about 100 different compounds, not looking at one in particular, but how the whole thing looks. What signature is there, based on looking at all the compounds?

[36:15] Dr. Beveridge presented some of that data at DDW and has a grant from the ACG to look at this and assess patients with and without EoE.

[36:33] Dr. Beveridge says further, doing longitudinal data of looking at patients once they've gotten into remission on treatment and seeing, do we then see a signature change?

[36:47] Dr. Beveridge says no one is under any illusion that endoscopies are going away. They will always be part of what we do in gastroenterology, but there are limitations: sedation, a full day away from work, nothing by mouth, and a driver, etc.

[37:04] If there are alternatives to help supplement that, it would be nice. One of the barriers for patients doing diet elimination is the number of endoscopies that are required. If there's a way to assess by breath if a food is a trigger, that would be good.

[37:32] Dr. Beveridge says that's the big thing she's looking at, but it will take years. It's not going to be a quick, easy one, but it's very interesting to take a look at.

[37:45] Holly speaks of how much treatment has changed since she was diagnosed. She has done all the scopes. She says this sounds amazing. She loves that people like Dr. Beveridge are thinking of how to make testing less invasive and more comfortable.

[38:12] Dr. Beveridge says another thing she is excited about is the transition of care. She recently did a survey and is analyzing the data to assess what the barrier is from the physician perspective in terms of helping our patients transition.

[38:40] Dr. Beveridge is also looking at doing a nice multi-center consensus to help this as well, led by Dr. Sophia Patel and Dr. Emily McGowan, who are fantastic in the EoE world, looking to see how we can make this better for our patients.

[38:58] Ryan says, with so much interesting work coming up, we'll have to have you back to chat about some of these additional projects. Everyone is super interested in less invasive stuff and better treatment pathways. Transition of care is an important part of that.

[39:11] Ryan appreciates Dr. Beveridge for joining the conversation and hopes to have her back on another episode so we can learn more about EoE and these different future research endeavors.

[39:20] For our listeners who would like to learn more about EoE today, you can visit http://apfed.org/EoE and check out the links in the show notes below.

[39:27] If you're looking to find specialists who treat eosinophilic disorders, we encourage you to use APFED's Specialist Finder, available at http://apfed.org/specialist.

[39:36] If you'd like to connect with others impacted by eosinophilic diseases, please join APFED's online community on the Inspire Network at http://apfed.org/Connections.

[39:46] If you have personally been impacted by eosinophilic disorders and are interested in sharing your experience, please check out http://apfed.org/shareyourstory.

[39:55] Ryan thanks Dr. Beveridge for joining us. This was a fun conversation and really insightful. Holly thanks APFED's Education Partners AstraZeneca, GSK, Sanofi, Regeneron, and Takeda for supporting this episode.

Mentioned in This Episode:

APFED on YouTube, Twitter, Facebook, Pinterest, Instagram

Real Talk: Eosinophilic Diseases Podcast

apfed.orghttps://apfed.org/specialist

https://apfed.org/connections

Claire Beveridge, MD

Cleveland Clinic

Education Partners: This episode of APFED's podcast is brought to you thanks to the support of AstraZeneca, GSK, Sanofi, Regeneron, and Takeda.

Tweetables (Edited):

"I have loved the work that we've done [at the Cleveland Clinic]. It's been really nice to center everything on our EoE patients and have nice multidisciplinary care with speech-language pathologists, allergists, dietitians, pulmonologists, and everyone." — Claire Beveridge, MD

"It's a little crazy to think that it's only in the last few years that we have had FDA-approved medications for [EoE], and that we have been jerry-rigging asthma medications to treat our patients." — Claire Beveridge, MD

"On the whole, dysphagia means issues with swallowing. … It's a feeling of something getting stuck or something slowly moving down. There are also subtle symptoms that can happen." — Claire Beveridge, MD

"The goal of a dilation is to get a disruption because there's scar tissue we want to break open." — Claire Beveridge, MD

"I am looking at the breath metabolome. If we breathe into a bag and take a look at all the volatile organic compounds that are in our breath, can we find a signature related to EoE?" — Claire Beveridge, MD

Guest Bio: Claire Beveridge, MD, is a Staff Member in the Department of Gastroenterology and Hepatology and heads the Eosinophilic Esophagitis (EoE) adult clinic as well as the transition pediatric to adult EoE clinic. Dr. Beveridge's specialty interests include: EoE, Achalasia, Barrett's esophagus, GERD, esophageal swallowing disorders, and esophageal motility disorders.

Ryan Piansky, a patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, interviews Maddie, a young adult living with EoE, about her journey with EoE and navigating an elimination diet.

Disclaimer: The information provided in this podcast is designed to support, not replace, the relationship between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.

Key Takeaways:

[:51] Host Ryan Piansky introduces this episode, brought to you thanks to the support of Education Partners GSK, Sanofi, Regeneron, and Takeda.

[1:07] Ryan introduces today's topic, eosinophilic esophagitis (EoE). EoE is a chronic, allergic, inflammatory disease of the esophagus. It occurs when eosinophils, a type of white blood cell, accumulate in the esophagus in elevated numbers, causing inflammation that can make eating or swallowing difficult or uncomfortable.

[1:25] Ryan introduces and welcomes today's guest, Maddie, also known as Eosinophilic Chick on Instagram. She's a patient advocate living with EoE.

[1:38] Maddie was diagnosed with EoE in 2021. She has been symptomatic for 10 to 12 years, but was not familiar with the condition itself until then. In her childhood, she was afraid of the upper endoscopy procedure, so she avoided it as much as she could.

[2:06] Besides the patient advocacy that she does, Maddie is an actuary. Throughout the week, she dedicates time to the healthcare industry space in the Philadelphia area. Maddie is 26, navigating her 20s with EoE.

[2:24] Ryan says he feels like being diagnosed as a young adult can be a very big shift. You're going through a lot of other changes: graduating from college, having to figure out work, and having to start managing a chronic illness like EoE.

[2:46] When Maddie was 12 years old, she would have a blockage in her throat. Typically, she walked away from the dinner table and had to regurgitate the food she had consumed.

[3:02] Since heading into college and becoming aware, with the pandemic, of the symptoms of COVID, shortness of breath is one that she leaned into. When she was 21, she felt like she couldn't breathe. It turned out that she was choking on food.

[3:18] There was an impaction, which Maddie obsessed about over time. In addition, around the time she was 21, her symptoms got the best of her. She wasn't able to keep up with thriving, day to day.

[3:31] As a child, some of her symptoms weren't normal, but they were manageable to adapt to: throwing up after a meal, here and there. Her symptoms started to pick up, and she started to lose a lot of weight in her 20s. That's when she sought a diagnosis.

[4:18] Maddie thought it was related to her lung function. She started to lean toward getting diagnosed with asthma, but after testing, that wasn't clear. Her gynecologist thought it was more of a hormonal conflict. They did a lot of labs but got no diagnosis.

[4:45] Meanwhile, Maddie was getting sick. As a last resort, she headed over to gastro. They didn't find anything initially. They did a barium swallow test, another lung function test, and finally, an upper endoscopy.

[5:04] Maddie had spent most of the summer before her senior year of college just trying to figure out what was going on, doing a multitude of tests, and that upper endoscopy with a biopsy captured the EoE.

[5:17] Maddie was able to get support from a specialist who dedicates all of their day-to-day work to EoE treatments.

[5:25] Ryan says it can be tricky to figure out right away what's going on; there are so many other conditions that could be the answer. Until you get to that final diagnosis, it can be a very long process. He's glad she got an answer, eventually.

[5:53] Maddie says, given the timeline of her life, a lot of people were anxious and worried about her future.

[6:08] Once she was able to get that answer, Maddie noticed a lot of relief from a ton of her symptoms, once she was able to get to work on it. Maddie also had an ulcer from frequent vomiting.

[6:25] Maddie had to slow everything down and be very intentional about the things she ate.

[6:51] Maddie lost 15 pounds that summer, as she was trying to gain weight. Whatever she ate, she still lost weight. She was worrying about that rather than about graduating that year.

[7:08] Maddie wanted to know how to register as a disabled student at her university to make sure she got all the resources she needed to be successful.

[7:18] Maddie was rewiring the things she once was worried about, relative now, to what this condition has packaged with it. It was a difficult time. It taught her a lot about discipline, making sure that hard things don't turn her away from achieving the goal.

[7:46] It taught Maddie about being intentional with her time and energy, what's best for her, what's going to make her succeed with whatever goal she's achieving.

[8:07] Ryan says now that Maddie is properly diagnosed, he hopes she's a little bit more in control of her health. Maddie says, "Answers are the biggest power with this condition."

[8:30] Maddie says that before her condition was managed, she went to the ER three times. The first time she was hospitalized, she could not keep down food for two days, so she had to get IV treatment. It wasn't necessarily an impaction, but she wasn't able to eat.

[9:04] The second and third times Maddie went to the ER were related to throwing up again.

[9:26] Maddie's goal was to stop vomiting altogether. She started to get serious with diet therapy, leaning into her six-food elimination diet.

[9:39] Maddie started the diet the week after she graduated, just to be home and have a lot of variables controlled to try the diet, rather than cutting corners. It was really simple to do at home.

[10:04] Maddie first tried cutting dairy, eggs, and shellfish. Her sister is allergic to those foods and is anaphylactic; Maddie is not. That elimination diet was helpful, but it didn't check all the boxes where all her symptoms were free.

[1024] Maddie tried swallowing medication from an inhaler instead of inhaling it into her lungs, trying to coat her esophagus with it. It was effective in the biopsy results, but she was still getting sick, so she did not feel comfortable proceeding with that treatment.

[10:42] All roads led to the six-food elimination diet that could reveal what the culprits were and what was causing her to be so sick. The results were surprising.

[11:06] Soy was a big trigger that surprised Maddie. She consumed so many soy products. That was quite humbling to hear. That was one of her biggest triggers.

[11:34] Maddie completed the six-food elimination diet with triggers of soy, eggs, dairy, nuts, and shellfish. Because of all those groups, it was really difficult for her to manage her diet effectively when going out to eat.

[11:52] Sometimes soybean oil is in a salad dressing or how foods are fried, to a point where Maddie wasn't able to maintain her EoE count below 15 eosinophils per high-powered field.

[12:08] With that, she started with a biologic, dupilumab. That enables her to eat all her trigger foods. An injectable is tough for Maddie as she's not fond of needles.

[12:36] Now Maddie can eat all of the food groups, which is definitely a huge win in terms of her treatment plan. It lessens the impact of living every day with EoE.

[12:53] Ryan says he is on dupilumab, as well. It works well for him. Maddie says she is not avoiding any food triggers, and that's the best part.

[13:24] Ryan says it takes a huge mental load off when you're not having to think about whether there may be soy in what you order from a restaurant, or having to check all the ingredients at the store to make sure that you're not accidentally being exposed.

[13:53] Maddie says, the best advice I would give [to someone on an elimination diet] is focusing on the perimeter of the grocery store. A lot of those foods are dedicated to being whole foods. So, I found that approach to be the most successful.

[14:12] Maddie says, and still finding things that you love and can find new things to enjoy. You're entitled to absolutely enjoy food. It brings a lot of joy into my life.

[14:23] Maddie says, I would specifically love traveling to a bunch of different grocery stores and exploring the allergy aisle. Everyone had their unique niche for it. So, you'll definitely find ones that are more favorable to your preferences than others.

[14:37] Maddie says, but find things, too, that you still enjoy beyond just feeling fully nutritious, and strong, and equipped. You're entitled to indulge, too, even with all the restrictions that you have.

[15:00] Ryan agrees there are a lot of options out there. Exploring and finding something can be really impactful from a quality-of-life perspective, just to have something new. Sticking to the border of the grocery store is a good way of putting it.

[15:13] Ryan says it's everything in those center aisles that gets so complicated. There are always some good, whole food options on the edges, which is nice.

[15:23] Maddie says read every food label, even if you think that you know what's in the food products. A brand of hummus had soybean oil in it. I had to retest, and it added six additional weeks onto my game plan because of that silly mistake.

[15:40] Read everything, even if you think you know it. Odds are, you don't. Don't trust any label until you've fully read it and are confident.

[15:56] Ryan says one of his trigger foods is rice and it does pop up in weird places. Once he was eating potato chips, but then he looked at the ingredients. Rice flour was the second ingredient!

[16:33] If you're not paying attention, it can catch you by surprise. Definitely read labels. It's time-consuming, but it's always a good idea.

[16:42] Ryan asks what other treatment options Maddie tried besides a swallowed inhaled steroid. When she had GI symptoms, she immediately tried a PPI, but was still symptomatic.

[17:47] Maddie says, facing the hard things, getting in front of a problem, and actually attacking it with the solution, is something she consistently dismissed in her teenage years. It took a lot of effort to find the perfect solution that fit.

[18:06] Maddie says, she'll continue to make sure that this is the best solution for her, as her lifestyle and needs change over time.

[18:14] Maddie says, attacking things that might seem intimidating, like 360-plus days of dieting, and not going out to eat, something that was really isolating for her; it just proved so much value in her journey.

[18:29] Maddie says, she is now equipped with that knowledge to make additional decisions as more treatments hopefully come out for EoE. You never know if there are more resources in the pipeline.

[18:48] Maddie says, with this knowledge that I've had, I think it's equipped me to face anything new, and/or ensure that my disease is managed, ultimately.

[18:57] Ryan says, there's a ton of ongoing research and all sorts of new treatments coming out. Ten years ago, he could not have imagined a treatment option like dupilumab.

[19:08] Ryan says, now that we have that, and it's proving so effective for so many people, he thinks that's so exciting and so wonderful. The fact that there are more treatment options like that coming out is so exciting.

[19:27] Maddie says she thinks accepting the illness, and accepting that she's not normal, and the way she lives comes with complexities, relative to her peers. It's frustrating.

[19:40] Maddie says she would love to just not take my dupilumab dose and eat whatever she wants, and not have an annual visit, not do upper endoscopies, and put all this effort, money, and mind all towards this illness.

[19:56] Maddie says accepting that she is unique and this illness will always be a part of her. Coming to terms with that is something she continues to struggle with, just recognizing her peers are not going through the same thing.

[20:12] Maddie says her peers are supportive, but she wonders why she is different and how she got there. She's still working through that.

[30:21] Ryan talks about all the small details a person living with EoE has to think about when traveling or going out for food after work. It's an extra level of anxiety that other people don't have to worry about.

[20:54] Maddie has suggestions for people living with EoE: Inform your peers about your condition. Share your knowledge with your community. With their understanding, they can empower you in social situations, rather than isolate you.

[21:14] When Maddie was dieting, her closest friend's family made sure she had something to eat rather than asking why she wasn't eating. Once she had to tell friends at a dinner that she wasn't eating, she was there to socialize.

[21:55] The more you work towards your acceptance, the more you inform your community, the more you inform yourself, those situations will come a lot lighter. There's always going to be a new scenario where you have to explain your condition.

[22:15] Maddie says, If you can get everybody to pronounce eosinophilic esophagitis, that's a huge win itself. I typically stop at EoE.

[22:32] Ryan talks about anxiety about not eating at dinner. Everybody's just happy you show up and are willing to socialize. Advocating for yourself is such a good lesson to take away from this.

[23:10] Ryan talks about Maddie's patient advocacy work. He follows her on Instagram. She puts so much great information out there. She also works in a professional career.

[23:30] Maddie talks about balancing her activities and illness. She aligns her content with her passion, so it's a hobby she enjoys. She hopes others find value in it. Outside of work, Maddie likes to advocate for EoE. It's busy, but she's super passionate about it.

[24:08] Ryan engages and advocates mostly through APFED, because they provide a lot of wonderful support. He's glad that Maddie uses her experiences to advocate through Instagram and her day-to-day life.

[24:33] Ryan says it's such a great way to approach living with a chronic illness.

[24:40] Maddie's initial goal was to create content so she could explore her growth in her journey. It was a diary about all the things she had done with EoE.

[24:58] Maddie mentions milestones in the community: dupilumab having FDA approval during that timeline, it was exciting to witness with her community.

[25:12] When Maddie was diagnosed, she found information online. The social media community is very powerful in making it real. Maddie loves APFED's content and the comments of folks impacted by the disease. It adds organic, natural reality.

[25:37] Maddie says she loves sharing her story, and she will continue to share it. This isn't ending yet. It's chronic, so EoE will be with her for quite some time. Hopefully, they'll find a cure, but in the meantime, it's not going anywhere.

[25:59] Maddie started her account when she got diagnosed in the Fall of 2021. She focused on alternative foods in the grocery store and dairy-free and egg-free cooking.

[26:18] When she transitioned to the six-food elimination diet, she focused on recipe creation and innovation. She tried to make a deep-dish Chicago-style pizza that was gluten-free. It was a huge mess! She gives respect to the gluten-free community.

[26:46] Ryan describes a poor experience with a chicken-crust gluten-free pizza.

[27:31] Maddie pushes for awareness because there are more people than you think in your community who have undiagnosed EoE. Some are quiet warriors with the condition, working behind the scenes, managing it, not sharing with their community.

[27:54] Between 2021 and now, Maddie has crossed paths with a lot of individuals, even down to childhood neighbors, who have the condition. It's humbling to know that other individuals are going through the same thing, quietly.

[28:13] Maddie says, being able to connect and unify that community is something she wishes she could promise her 2021 self: There's a community out there waiting for you with open arms that will support you through this journey.

[28:30] There are a lot of great people in this space who are unfortunately impacted by this disease. Knowing the community is there is something I would tell myself.

[29:02] Ryan invites Maddie to share a message of encouragement for people living with eosinophilic-associated diseases.

[29:08] Maddie would say, failure is not always a failure. In this case, it took her four forms of therapy treatments until she found the perfect one for her. Try to keep your mind open on the pathways of managing your symptoms.

[29:30] It may cause you to run into a couple of failures, which is so frustrating. She has been in tears before about this, but sometimes failure brings you one step closer to success, or in this case, relief in managing your symptoms.

[31:04] Maddie and Ryan discuss the string test, relating to upper endoscopies, and the benefits of a shorter test without anesthesia. Maddie is excited by the things in the pipeline for potential treatments or maintenance options.

[32:06] Ryan has talked to people who have had the string test, and it sounds like a much better experience until they have to pull it back up, and then it sounds like maybe you wish you were asleep for that part. Overall, it sounds so much more pleasant.

[32:21] Ryan and Maddie discuss trans-nasal endoscopies, with a thinner tube and no anesthesia. It's on Ryan's radar. Endoscopies are not fun.

[34:37] Maddie is excited that there are commercials starting with EoE, talking about the condition on television.

[35:21] Ryan says, it is exciting that there's so much more understanding about this disorder. There is more public awareness now. Maybe 10 years ago, you never would have known that your neighbor also has EoE.

[35:34] Now people can get these diagnoses, understand what's going on, and talk about it more openly, which is really exciting.

[35:45] Maddie says APFED had a great campaign in May, promoting EoE awareness. The more we do that, the more everybody impacted by this disease will win, for sure.

[36:01] Ryan thanks Maddie for her work promoting EoE awareness. It's great to have people out there pushing advocacy and getting information out there. Ryan thanks Maddie for joining us today for this great conversation.

[35:22] For our listeners who would like to learn more about eosinophilic disorders, please visit http://apfed.org and check out the links in the show notes.

[36:28] If you're looking to find specialists who treat eosinophilic disorders, we encourage you to use APFED's Specialist Finder, available at http://apfed.org/specialist.

[36:37] If you have personally been impacted by eosinophilic disorders and are interested in sharing your experiences, please check out http://apfed.org/shareyourstory.

[36:45] If you'd like to connect with others impacted by eosinophilic diseases, please join APFED's online community on the Inspire Network at http://apfed.org/Connections.

[36:56] Ryan thanks Maddie. Ryan thanks APFED's Education Partners GSK, Sanofi, Regeneron, and Takeda for supporting this episode.

Mentioned in This Episode:

APFED on YouTube, Twitter, Facebook, Pinterest, Instagram

Real Talk: Eosinophilic Diseases Podcast

apfed.orgEsophageal string test (early research was supported by an APFED grant)

https://apfed.org/specialist

https://apfed.org/connections

Eosinophilic.Chick — Maddie on Instagram

Education Partners: This episode of APFED's podcast is brought to you thanks to the support of GSK, Sanofi, Regeneron, and Takeda.

Tweetables (Edited):

"I have officially been diagnosed with EoE since 2021. So, coming up on fiveish years now with the condition, knowing that I have it. I've been symptomatic for over 10 to 12 years, call it, just not really familiar with the condition itself." — Maddie

"My symptoms started to pick up, and I started to lose a lot of weight in my 20s. That's really when I started to get a lot of attention towards my diagnosis." — Maddie

"I first tried cutting dairy, eggs, and shellfish. My sister has an allergy to those foods and is anaphylactic; I am not. That diet was good, but it didn't check all the boxes where all my symptoms were free." — Maddie

"I completed the six-food elimination diet with triggers of soy, eggs, dairy, nuts, and shellfish. Because of all those groups, it was really difficult for me to manage my diet effectively when going out to eat." — Maddie

"I started my [Instagram] account when I got diagnosed in the Fall of 2021. I focused on alternative foods in the grocery store and dairy-free and egg-free cooking. … When I transitioned to the six-food elimination diet, I focused on recipe creation and innovation." — Maddie

Guest Bio: Maddie is the creator behind Eosinophilic Chick, a platform dedicated to raising awareness about eosinophilic esophagitis (EoE), food allergies, and life with chronic illness. Diagnosed with EoE as a young adult, Maddie shares her experiences navigating elimination diets, medical treatments, endoscopies, and the emotional impact of living with a chronic condition. Through honest storytelling, practical tips, recipes, and advocacy, she aims to help others feel less alone.

Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED's Health Science Advisory Council, interview Phillip Arceneaux, PhD, on his journey with EoE and balancing his career.

Disclaimer: The information provided in this podcast is designed to support, not replace, the relationship between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.

Key Takeaways:

[:50] Co-host Ryan Piansky introduces this episode, brought to you thanks to the support of Education Partners GSK, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz.

[1:12] Holly introduces today's topic. It's May, and each year in May, there are several awareness observances for eosinophilic-associated diseases, including National Eosinophil Awareness Week, World Eosinophilic Diseases Day, and World EoE Day.

[1:29] Throughout May, APFED is sharing stories from individuals and families living with eosinophil-associated diseases to highlight the impact of these chronic conditions.

[1:38] Ryan says, Today, we'll be discussing eosinophilic esophagitis (EoE). EoE is a chronic allergic inflammatory disease of the esophagus. It occurs when eosinophils, a type of white blood cell, accumulate in the esophagus in elevated numbers, causing inflammation that can make eating or swallowing difficult or uncomfortable.

[1:56] Holly introduces today's guest, Dr. Phillip Arceneaux, a patient advocate living with EoE since 2019.

[2:18] Phil is 35. He was born and raised in Lafayette, Louisiana. He received his undergraduate degree there. He worked at the U.S. Naval Academy in Annapolis, Maryland. Then he worked at the University of Oregon.

[2:38] Phil moved to Florida and did his Ph.D. in Mass Communication at the University of Florida. Since 2020, he has been based out of the Cincinnati area, working at Miami University of Ohio.

[3:05] Phil was diagnosed with EoE in March of 2019, while finishing his degree at UF.

[3:12] Phil was eating dinner with his girlfriend. He took a bite of a roast beef sandwich, and it didn't go down smoothly, it became impacted.

[3:56] Phil thought he had food stuck in his windpipe. He was running around banging his chest. He calmed down and was able to get some of the food out, and he was breathing again.

[4:12] Phil thought he was fine. He quickly realized he wasn't. He still had a partial impaction. He didn't know what was going on in his chest. He spent about 30 minutes moving around, coughing, and trying to get his chest to feel right.

[4:44] After about an hour, Phil decided to go to the ER. His girlfriend insisted on driving him to the hospital. It was spring break, so the ER was not busy. It still took a couple of hours to be seen and treated.

[5:25] The doctors assessed him. They gave him medicine to induce vomiting. About 12 hours after the initial choking, his impaction cleared. They kept him overnight and gave him an endoscopy in the morning to check his esophagus and take biopsies.

[6:31] Phil was in the ER for four to six hours before anyone told him what they thought he had. Then the ER doctor told him he was 95% certain Phil had eosinophilic esophagitis. Phil had never heard of it.

[7:04] The ER doctor gave Phil a rundown of EoE. He said Phil would have an endoscopy, and then he would be referred to a GI and set up for treatment. The doctor said he couldn't confirm it before the endoscopy, but he thought it was EoE.

[7:31] Ryan says he's talked to people who have had months-long processes of getting their diagnosis. Phil gives all the credit to the hospital. He was fortunate that his experience was good.

[7:55] Phil says that the staff at the ER and the GI specialist were so knowledgeable about the research and where things were going in this area of medicine. They were very confident about the diagnosis and treatment plan.

[8:11] Dr. Arcenaux gives a shout-out to his GI. He spent well over an hour with him during his initial consult. He explained how EoE would impact him, from diet, grocery shopping, and challenges eating at restaurants, because of cross-contamination.

[8:42] The GI specialist talked him through impacts on dating and dining out and how to approach social activities.

[9:09] Phil's GI specialist talked to him about employers. He would need employers with health insurance that will cover the endoscopies and treatments for EoE. Phil appreciated the initial onboarding for his EoE diagnosis.

[9:41] Ryan says he needs to discuss this with Phil, as he just finished his Ph.D. a few months ago, and he's looking at insurance for his new job, and how to figure out business lunches.

[9:51] Ryan says Ph.D. students are so motivated by free food. As someone with EoE, that never applied to him. Ryan says shifting from normal eating habits to an EoE diet is a major shift.

[10:27] Phil knows now that there were signs and symptoms, but he had no idea about them before his diagnosis.

[10:33] Phil is on a special diet for his EoE. When he's not great at avoiding his trigger foods, he starts to see dysphagia symptoms in his swallowing, and he has quite a bit of regurgitation. He had been seeing that for months before this initial major food impaction and ER visit.

[10:54] Phil had no idea what was going on. He just thought it was weird that he was regurgitating more than he used to. Sometimes food didn't go down well. Once or twice, he had a small aspiration event. He thought he needed to chew better.

[11:11] He didn't know what those symptoms meant, and he wrote them off. None of it made sense until that diagnosis. Even then, it took a while to wrap his head around it. Years removed, he sees there were so many signs and symptoms he never processed.

[11:28] Holly asks what Phil means by aspiration. He says he means water going down his windpipe, making it hard to breathe, with liquid in his lungs. Holly says that aspiration can be caused by inflammation in people who have EoE.

[12:07] Holly says people with EoE can be sent for a swallow study to look at the anatomy of their swallow function. That's a subject for another episode!

[12:35] Ryan says Phil noticed he was regurgitating more than normal and remarks that people with chronic illnesses don't realize that most people don't normally regurgitate at all. It's a sign that something's wrong.

[13:03] The ER doctor didn't offer Phil any other diagnosis than EoE. The doctor was 95% sure he had EoE, but confirmed it with an endoscopy.

[13:20] Holly asks Phil what food allergies he has. As an infant, he had an egg allergy that limited his vaccines. Now he knows his primary allergen is egg, and it led to his EoE issues.

[13:51] When Phil started his Ph.D. program, he wanted to eat healthier foods. He cut out fast food, and he ate more eggs. He consumed many eggs during his Ph.D. program. A snack was scrambled eggs or something with scrambled eggs.

[14:22] Phil went through a carton of 18 eggs in less than a week. He knew that when he was younger, he'd had egg sensitivity, but as an adult, he'd eaten eggs and nothing happened that registered as an issue. He thought he had outgrown it.

[14:40] Phil says he had outgrown other food allergies. He assumed eggs were fine, so he adopted a heavy egg diet to increase his protein intake and be healthier. Then all these symptoms manifested.

[15:00] Phil never associated the symptoms with eggs. His treatment plan is dieting and minimizing egg as much as possible. That is not easy in the United States, where everything is processed and often contains egg.

[15:19] Holly says she has seen an influx of adult-onset EoE patients with a history of a dairy or egg allergy who were putting cottage cheese and eggs in everything, and all of a sudden, started having regurgitation and food getting stuck.

[15:51] Phil doesn't eat scrambled eggs anymore. One slice of a cake with eggs in it will not send him to the ER. It takes a couple of days of high exposure to reach that point. He knows what he can have daily that will not impact him in the long term.

[16:20] Holly and Ryan agree that it's important to know your limits, and consult with your physicians about foods. Rice is a trigger for Ryan, but if brown rice syrup is about the 20th ingredient, he can have it and be fine. If he were to eat a lot of rice, he will have issues.

[17:21] Phil says he recently got married, and his wife is a health nut. She has radically changed his diet. They eat very high-protein, low-fat, and low-carb. It's been easy to manage that without eggs. They eat a lot of chicken, turkey, and fish.

[17:41] Being from Louisiana, Phil says if he had to give up seafood, he doesn't know what he would do. He's a huge craft beer lover. If he had to give up gluten, he doesn't know what he would do. He can manage without eggs.

[18:21] Ryan says dairy was a big trigger for him when he was younger, but now he's on dupilumab, a biologic approved for treating EoE, and that's helped him a lot. He's started to integrate whey protein and milk protein back into his diet.

[18:47] Phil says once he finished with school, he graduated and lost health insurance. He didn't have a source of income or health insurance, so he declined to have dilation therapy. That's also why he deferred to dietary therapy. He removed his allergens one by one.

[19:12] Phil was diagnosed in 2019, not long before the pandemic hit. He lived in a bubble for two to three years and kept to a very regimented diet. That's where he started to find his balance.

[19:30] Phil travels quite a bit as a professor. He goes to international conferences. In 2022, a big annual conference opened in Paris, France. He was living his best life, but didn't register that every pastry he put in his mouth had an egg wash.

[20:14] Phil was there for seven days. On the sixth night, he was eating a tough, dry steak. He had a severe food impaction, worse than the one in 2019. He was with colleagues who didn't know what he had.

[20:40] He paid, excused himself, went to his hotel room, and tried to vomit it up. He couldn't do it. He called an Uber and went to the nearest ER. He had an emergency endoscopy. It's not easy to navigate another country's healthcare system, but he did it.

[21:14] When Phil returned from the conference, he said he needed to get serious. He had a GP, but he needed a GI specialist. Cincinnati has multiple great health systems, so he got a GI specialist and started down a path of treatment.

[21:38] He told his GI specialist, this has happened to me, and I never want it to happen again. What can we do? He started with proton pump inhibitors. No effect. He doesn't have acid reflux. Next was the topical corticosteroid, swallowed budesonide.

[22:22] Phil used a pump for asthma, but this was to swallow. After two weeks, he developed a bad case of thrush that took a long time to get rid of. He had never had thrush and didn't know what it was. It took a couple of rounds of treatment to clear up.

[22:43] After that, in 2022, he moved to dupilumab. The FDA had just approved it as a course of treatment for EoE. Phil did not do well with the treatment, and has since gone back to back to a diet-only course of treatment.

[24:13] Phil says the dupilumab shots did help. He had been having reactions to some foods for years, and after a couple of weeks on the shot, those reactions went away, and he could eat the foods, like avocado and watermelon, again.

[24:39] The dupilumab did him some good, as he returned to some foods that he loved, but it wasn't a long-term solution for him.

[24:50] Ryan shares that he started his Ph.D. in 2019. He felt great, he had no symptoms, and he was following up with his GI every year. With no symptoms, he wasn't scoped until 2025 for insurance reasons. His scope was horrible.

[25:11] His symptoms were in remission, but his esophagus looked terrible. He had to switch up his treatment plan. Ryan advises all listeners to follow up with their GI.

[26:14] Phil says he thinks he's in a very lucky position that what his allergen is, what his dietary preferences are, and how he manifests symptoms, do not significantly impact his day-to-day.

[26:36] Phil's doctor in 2019 had advised him that EoE would impact his work and his business lunches. With the treatment plan he has opted into, it doesn't impact his day-to-day. He says he is very lucky, compared to what other patients deal with.

[26:50] It hasn't impacted his day-to-day, but the problem is, when it does impact something. It's very big, very noticeable, and it's in front of everyone. He recalls his Paris episode. He's very vocal about it. That's why he reached out to APFED.

[27:13] Phil likes talking about it. The only way we know more about it is when we talk about it and share our stories. His colleagues all know he has EoE. They don't understand exactly what it is, but when he's having trouble, they understand.

[27:44] When Phil has an issue, he doesn't tell anyone; he just gets up and walks out of the room and paces the hall, doing his stretches.

[28:09] Largely, it's just letting people know he has EoE. They recognize that he manages it himself, and he's OK.

[28:24] Phil says figuring out your medical treatment plan and balancing your quality of life is different from having a disease that can eventually be treated.

[28:51] This is something you have to deal with the rest of your life. That's going to fundamentally change things, not drastically, but in fairly subtle ways.

[29:18] No matter how comfortable you get, you have to be diligent. You always have to be cognizant of your symptoms and stay on whatever your treatment plan is, whether that's dieting or medication. This will not go away. You're always going to have it.

[29:37] Phil says you have to frame it as a lifelong marathon and find a very sustainable pace. That's where the quality of life is so important. We're human beings. We have to enjoy life. Settle in for the long haul. That's how it will be sustainable.

[30:18] Ryan thinks self-advocacy is important, whether talking with doctors, co-workers, or friends. Take care of yourself and make sure you're doing OK. Make sure you're putting yourself in a position to stay healthy, especially while balancing a career.

[30:45] Ryan says those are great things for our listeners to keep in mind.

[30:49] For our listeners who do want to learn more about eosinophilic disorders, we encourage you to visit http://apfed.org and check out the links in the show notes below.

[30:55] If you're looking to find a specialist who treats eosinophilic disorders, we encourage you to use APFED's Specialist Finder. available at http://apfed.org/specialist.

[31:04] If you have personally been impacted by eosinophilic disorders and are interested in sharing your experience, please check out http://apfed.org/shareyourstory.

[31:12] If you'd like to connect with others impacted by eosinophilic diseases, please join APFED's online community on the Inspire Network at http://apfed.org/Connections.

[31:23] Ryan thanks Phil for joining us today. This was a super interesting conversation. Phil thanks Ryan and Holly for having him on. He is happy to represent on the podcast.

[31:35] Holly thanks APFED's Education Partners GSK, Sanofi, Regeneron, and Takeda for supporting this episode.

Mentioned in This Episode:

APFED on YouTube, Twitter, Facebook, Pinterest, Instagram

Real Talk: Eosinophilic Diseases Podcast

Apfed.org

https://apfed.org/specialist

https://apfed.org/connections

Phillip Arceneaux, PhD

Education Partners: This episode of APFED's podcast is brought to you thanks to the support of GSK, Sanofi, Regeneron, and Takeda.

Tweetables (Edited):

"I took a bite of a roast beef sandwich, and it wasn't going down smoothly. I drank some water. The bite became an impaction. The water stayed in my esophagus, and I started to aspirate." — Phillip Arceneaux, Ph.D.

"The ER doctor told me he was 95% certain I had eosinophilic esophagitis. I had never heard of it. He gave me a quick rundown of what it was." — Phillip Arceneaux, Ph.D.

"I want to give a shout-out to my GI. He spent well over an hour in my initial consult. He explained how [EoE] would impact me, from diet, grocery shopping, and eating at restaurants, because of cross-contamination." — Phillip Arceneaux, Ph.D.

"I never associated the symptoms with eggs. My treatment plan is diet and minimizing egg as much as possible. That is not easy in the United States." — Phillip Arceneaux, Ph.D.

"This is something you have to deal with the rest of your life. That's going to fundamentally change things, not drastically, but in fairly subtle ways." — Phillip Arceneaux, Ph.D.

"No matter how comfortable you get, you have to be diligent. You always have to be cognizant of your symptoms and stay on whatever your treatment plan is, whether that's dieting or medication. This will not go away. You're always going to have it." — Phillip Arceneaux, Ph.D.

Guest Bio: Dr. Phillip Arceneaux is an Assistant Professor of Strategic Communication at Miami University in Ohio, where he teaches mass communication courses focusing on media psychology and content strategy. Phil was diagnosed with EoE in 2019 following an ER visit to UF Health Shands Hospital that required an emergency endoscopy. A Cajun French native of Lafayette, Louisiana, he earned his Ph.D. from the University of Florida and has resided in Cincinnati since 2020.

Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED's Health Science Advisory Council, interview Dr. Chukwuemeka Oko, MD, MBA, on clinical trials.

Disclaimer: The information provided in this podcast is designed to support, not replace, the relationship between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.

Key Takeaways:

[:49] Co-host Ryan Piansky introduces this episode, brought to you thanks to the support of Education Partners GSK, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz.

[1:13] Holly introduces today's topic — clinical trials — and today's guest, Dr. Chukwuemeka Oko, a Clinical Research and Medical Affairs Professional supporting Duke University Hospital's Department of Gastroenterology and Transplant Hepatology.

[1:33] Dr. Oko explains that he is sharing general, educational information from his perspective and experience, not speaking on behalf of Duke University, nor any industry sponsor, nor any company he has worked for.

[1:50] Dr. Oko's goal today is to help the listeners feel clearer, more confident, and more in control when they are thinking about clinical research.

[2:29] Dr. Oko's work sits mainly at the intersection of clinical research and medical affairs. He helps translate evolving science into practical, patient-centered decisions.

[2:40] From an academic standpoint, he supports clinical trials and evidence generation from feasibility through education.

[2:49] Dr. Oko also engages investigators and thought leaders from industry sponsors in scientific exchanges that lead to insights, study design, and real-world care pathways.

[3:03] Dr. Oko had two reasons to study eosinophilic esophagitis and eosinophilic disease. The first is the patient journey and biology.

[3:11] On the patient side, many people spend a long time seeking answers. Sometimes they feel dismissed before they get a clear diagnosis and a plan that fits their life.

[3:24] On the biology side, eosinophilic disease teaches us a lot about how our immune signals can drive information differently across tissues like the esophagus and airways.

[3:40] Dr. Oko supported an EoE study experience with an industry sponsor in the past. The best research doesn't just test; it helps patients and clinicians make clearer decisions.

[4:12] Dr. Oko explains that a clinical trial is a carefully designed, carefully crafted study in people that answers specific medical questions, most often about safety, effectiveness, or dosing of the study drug or how a treatment should be used.

[4:32] A key structure of a study is a written protocol where safety monitoring is in place, and the defined outcome or results are very reliable. The FDA always oversees clinical trials in the U.S.

[4:44] Dr. Oko often describes a trial as a highly-monitored learning system. It's how medicine moves from "We think this might help" to "We know what helps, for whom, and also at what risk."

[5:09] Dr. Oko says clinical trials usually study what improves patient outcomes, for whom, and at what risk, using methods that we can trust. Trials may evaluate new medicines, devices, dosage strategies, or even procedures.

[5:31] Clinical trials can also study non-drug approaches such as diet interventions, symptom tracking, monitoring tools, and education strategies.

[5:44] Many trials have also included biomarkers, or signals in the blood or tissue, helping to support an EoE diagnosis so that the patients can get treated in an early and effective manner.

[6:36] Dr. Oko says patients sometimes ask him if they are guinea pigs. In reality, trials are heavily regulated and closely monitored, with strict safety reporting requirements. Participants are not guinea pigs.

[7:06] Dr. Oko also hears patients ask if they are "stuck" once they join the clinical trial. No, a trial is a completely voluntary participation, and they can withdraw at any time.

[7:25] Other patients ask if trials are only for people who are out of options. Many trials are designed for earlier stages, especially when the goal is to prevent complications or reduce steroid exposure.

[7:46] The last question Dr. Oko hears a lot is "Will I be in the placebo group?" He says it's an understandable fear. They are asking if they will go untreated in the placebo group.

[8:29] In many trials, a placebo is not the same as "no care". Often, the participants continue the standard-of-care treatment, and the study drug or placebo is added to the standard-of-care treatment.

[8:45] Trials typically involve symptom monitoring and a plan for what happens if the symptoms worsen. There are exit criteria.

[9:01] From the pharmaceutical side, it's the end of treatment once you decide to voluntarily exit the study.

[9:10] Dr. Oko's advice is, if you participate, ask the study team physicians to explain in plain language what you'll receive, what you can continue, and what happens if you flare up. Clear answers are always a part of ethical research.

[10:33] Holly asks what it means to participate in a Phase 1, Phase 2, or Phase 3 trial. Dr. Oko says a Phase 1 trial is focused mostly on the safety and the dosing regimen. It's usually a small group of five to 100 or so.

[10:52] A Phase 2 trial always looks for the drug's effectiveness and continues monitoring safety. It's usually a group of 100 to 300 subjects. They look for meaningful signals of the outcomes derived from the trial.

[11:10] A Phase 3 trial is usually large. It's multi-centered. It's called a complementary study. It involves thousands of patients. It can even be across nations and states.

[11:26] This is where they compare new interventions against a placebo or against a standard of treatment to provide clinical benefits and support for regulatory approval.

[12:03] Participating in any phase of a trial includes fitting the eligibility criteria of inclusion for that particular phase. If you are a good match, you can be in either a Phase 1, Phase 2, or Phase 3 trial.

[12:52] Holly says she knows that a lot of people with EoE or EGIDs are very curious about trials and how to participate in them.

[13:00] Ryan says we have a very active patient community, and everyone's looking for ways to get involved in research and new diagnostics or medications to improve their own outcomes and help everyone else.

[13:35] Dr. Oko says the benefits of participating in a clinical trial include access to potentially disease-modifying therapies years before they reach the market.

[13:47] Another benefit is extraordinarily close medical monitoring. When you're in a clinical trial, you have more frequent visits and more frequent labs than usual.

[14:01] Endoscopies are out of the normal standard of care, but will be more frequent than normal to analyze the efficacy of the study drug.

[14:11] Dr. Oko says one of the risks is the unknown side effects the study drug comes with, because we are still understanding the biology.

[14:21] The time commitment for visits can be more than typical for a patient, especially if there is a long travel time involved. Patients may arrive at 7:00 or 8:00 a.m. They may need to find a place to live nearby, depending on the pace of the trial.

[14:57] Holly lives in Maine, and a lot of the trials are in Boston. It's a lot of travel. For people with any kind of chronic illness, all we think about is money. Holly asks if people pay to be part of a clinical trial.

[15:25] Dr. Oko states that the patients do not have to pay anything to be part of a clinical trial. Patients do get compensated by the trial sponsor for travel, accommodation, parking, and a meal for the days they are onsite.

[16:33] Dr. Oko says that patients tend to bring up insurance. It is a misconception that the study will pay for their standard-of-care medication during the study. Patients need to ask the study team what insurance will pay for and what the study will pay for.

[16:59] Dr. Oko says the insurance usually covers the regular standard-of-treatment, but any other additional treatment, procedures, and visits are all covered by the study sponsor.

[17:29] The study sponsor may ask for an endoscopy to be done six months before the study to determine eligibility for the study. If it is done within a year, the study sponsor will determine if you are qualified. That is part of the eligibility criteria in some cases.

[18:26] Dr. Oko tells patients to always ask questions, like what the schedule of events is in the clinical trial.

[18:35] The schedule of events tells you how many visits are required for you to be part of this study. They will list the activities to be done. They will list the labs you will need at what week. They will list when you need endoscopies, at week one and later.

[19:05] If you exit from the study, if you don't want to participate anymore, you are still required to come on site just to make sure that you are in good shape. Those are called formal visits.

[10:29] Dr. Oko explains that formal visits are necessary for the patient's safety and to make sure that the data points collected in the study will be effective.

[20:01] Patients enrolling in a clinical trial can also ask about the known risks of the symptom monitoring plan. They can ask what is covered and what is not covered by insurance, and what will be considered out of pocket.

[20:20] If patients are in the placebo group, what will happen if symptoms worsen? In the protocol, there is always a rescue plan. If a symptom flares up, the Principal Investigator carries out the rescue plan.

[20:58] The study team is available on a 24/7 hotline. The questions you ask are very important. No question is too small to ask. Every question and every symptom you report is important. You can withdraw at any time, and there is always a follow-up.

[22:19] Dr. Oko says the trial data that has already been collected from part of our eosinophilic studies has led to various FDA approvals of the biologics. We are working to try to transform EoE from a steroid-dependent or diet-only disease into a position of long-term control.

[22:37] Trial findings have shaped care, expanding evidence-based options, clarifying which patients benefit the most, and improving how we measure our outcomes, the symptoms, and quality of life, as measured by patients' quality-of-life surveys.

[23:06] Quality-of-life surveys are very important for the study team. They help to measure safety, too. The evidence generated from this data leads to insights and improves study design, protocol design, and ultimately, improves patient care.

[23:40] Ryan says the community is interested in clinical trials because they benefit patients, researchers, and clinicians. We're thankful for the clinicians and researchers putting in all the work to make these clinical trials happen.

[24:01] Ryan adds, we're also thankful for the patients who are interested in these trials. For patients who are looking to participate, how can they find clinical trials to participate in and join?

[24:15] Dr. Oko says people can find the website ClinicalTrials.gov. It's an important tool in looking for various clinical research. Scientists are recruiting at a given time. You can use the Advanced Search option to narrow the search by state and criteria.

[24:54] You can always discuss clinical trials with your primary care physicians. You can look for major academic medical centers. Most of them always have clinical research studies going on.

[25:07] Dr. Oko says APFED.org is a very good tool. It always maintains up-to-date trial listings and patient-friendly summaries where patients can read about the studies.

[25:30] Ryan says he's very appreciative of the mention of APFED. There is a link on http://apfed.org so people can find studies. There are clinical trials listed that people can research more and join.

[25:46] Holly asks Dr. Oko to share advice for listeners who are considering participating in a clinical trial. He shares, "I want each one of you to approach the decision with the same care you would with any major medical choice. Review the Informed Consent Form (ICF)."

[26:23] "The word informed means you should be informed. It's your right to get informed with every line, every detail. The Consent Form can be 30 pages long, but please just know that you are not in a rush to answer."

[26:43] "You can take the Consent Form and discuss it with your friends, your family, your primary care physician, your gastroenterologist, and your allergist and get more information."

[27:00] "When you join an interventional trial, or a registry, your contribution accelerates the science and benefits the entire eosinophilic community."

[27:12] "From my years of reviewing medical charts and supporting new recruitments, I feel patients feel most satisfied when they are fully informed and genuinely partnered with the study team. That's how I partner with the patients. I am always there to help."

[27:40] Ryan says that is great advice for patients, and hopefully, some of our listeners to this episode will go out there and look for clinical trials to participate in or ask their physicians, next time they're getting care.

[27:52] For patients who would like to know more about eosinophilic disorders, we encourage you to visit http://apfed.org and check out the links in the show notes below, specifically to research opportunities listed on http://apfed.org.

[28:08] If you've been personally impacted by eosinophilic disorders and are interested in sharing your experiences, we encourage you to please check out http://apfed.org/shareyourstory.

[28:17] Ryan thanks Dr.Oko for joining us today. This was really helpful and insightful, and hopefully, we'll have many new patients interested in joining clinical trials. Dr. Oko thanks Ryan and Holly for having him on and thanks every listener who has joined us.

[28:33] Dr. Oko says it has been a genuine pleasure and privilege for him. He has spent years seeing patients, reviewing their charts, and hearing their stories. We see you, we hear you. Science is advancing rapidly and shaping outcomes. You are not alone.

[30:17] Holly thanks Dr. Oko for his research and clinical trials, and thanks APFED's Education Partners GSK, Sanofi, Regeneron, and Takeda for supporting this episode.

Mentioned in This Episode:

APFED on YouTube, Twitter, Facebook, Pinterest, Instagram

Real Talk: Eosinophilic Diseases Podcast

Apfed.org

https://apfed.org/specialist

https://apfed.org/connections

http://apfed.org/research/clinical-trials

Duke University Hospital's Department of Gastroenterology

Education Partners: This episode of APFED's podcast is brought to you thanks to the support of GSK, Sanofi, Regeneron, and Takeda.

Tweetables:

"Many people spend a long time seeking answers. Sometimes they feel dismissed before they get a clear diagnosis and a plan that fits their life." — Chukwuemeka Oko, MD, MBA

"On the biology side, eosinophilic disease teaches us a lot about how our immune signals can drive information differently across tissues like the esophagus and airways." — Chukwuemeka Oko, MD, MBA

"In many trials, a placebo is not the same as no care. Often, the participants continue the standard-of-care treatment, and the study drug or placebo is added to the standard-of-care treatment." — Chukwuemeka Oko, MD, MBA

"I tell patients to always ask questions, like what the schedule of events is in the clinical trial." — Chukwuemeka Oko, MD, MBA

"[If a patient exits the study], formal visits are necessary for the patient's safety and to make sure that the data points collected in the study will be effective." — Chukwuemeka Oko, MD, MBA

"From my years of reviewing medical charts and supporting new recruitments, I feel patients feel most satisfied when they are fully informed and genuinely partnered with the study team." — Chukwuemeka Oko, MD, MBA

Guest Bio:

Chukwuemeka Oko, MD, MBA

Co-hosts Ryan Piansky, a patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED's Health Sciences Advisory Council, interview Angelica Lackey Mirzoca, MPH, about her research on social vulnerability and EoE.

Disclaimer: The information provided in this podcast is designed to support, not replace, the relationship between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.

Key Takeaways:

[:51] Co-host Ryan Piansky introduces this episode, brought to you thanks to the support of Education Partners GSK, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz.

[1:13] Holly introduces today's topic — research on social vulnerability and eosinophilic esophagitis (EoE) — and today's guest, Angelica Lackey Mirzoca, a fourth-year medical student at the University of North Carolina School of Medicine in Chapel Hill.

[1:38] Angelica will start an internal medicine residency this summer and is planning to do a fellowship in GI and liver disease. Before medical school, she studied public health nutrition at UNC and worked in clinical research in eosinophilic diseases.

[1:58] Angelica has been able to use her analytic and public health skills as a member of UNC's EoE Research Group, which is part of the larger Center for Esophageal Diseases and Swallowing, led by Dr. Evan Dellon.

[2:15] Ryan sees Dr. Dellon as his GI. Dr. Dellon has been a guest on the Real Talk: Eosinophilic Diseases podcast. Ryan says Dr. Dellon is wonderful, and many in the community look up to him. It's exciting that Angelica is doing research alongside him.

[2:38] Dr. Craig Reed, part of the EoE Group, who works closely with Dr. Dellon, invited Angelica to a research meeting. She's always had an interest in digestive tract function and diseases.

[2:55] When Angelica was growing up, her father had Barrett's Esophagus. She saw him choking a lot when he was swallowing. It was really scary.

[3:04] Angelica says that being in the EoE space and appreciating the impact that problems swallowing have, not only on the patient's everyday life but on the people around the patient, it was important to her to dedicate her skills and time to EoE.

[3:37] Angelica researched EoE and social vulnerability. Her abstract at the 2025 Digestive Diseases Week was titled "Increasing Social Vulnerability Impacts Presentation and Decreases Treatment Response in Eosinophilic Esophagitis."

[3:58] Angelica explains that social vulnerability is a term to describe the context of people's day-to-day lives and the barriers and obstacles they navigate.

[4:07] In this context, their lived experience has a dramatic impact on people's ability to anticipate and recover from different stressors.

[4:16] Some groups are notably more vulnerable, including kids, older adults, single-parent households, and people who live with physical and mental disabilities.

[4:28] Social vulnerability can be measured qualitatively in terms of socio-economic status and household composition. Other composite scores or variables can serve as quantitative assessments of social vulnerability.

[4:50] Ryan says he does research for graduate school associated with climate vulnerability and infrastructure. He has done some work with the CDC's Social Vulnerability Index and the Climate and Environmental Justice Screening Tool.

[5:20] Angelica says they used the CDC's Social Vulnerability Index in the study. It's a 16-variable composite score with four overarching themes. It's down to the Census Track level. You can associate it with patient zip codes.

[5:37] The SVI can populate into patient charts or a QI database. It was very easy to incorporate into the database.

[5:50] The QI database was developed to help people understand what neighborhoods and communities might need additional support in natural disasters. It includes variables that impact people's health day-to-day.

[6:18] Angelica says health equity is core to everything she does. Participating in the EoE research, it was important to her to consider the social vulnerability, or people's lived reality, and how it impacts their ability to feel empowered to access care.

[6:42] Angelica talks about people not knowing what's wrong with them, choking. Angelica worked in restaurants for 12 years before going to medical school. She listened to a lot of people share their struggles to communicate with the doctors.

[7:09] Holly says when she worked at a major children's hospital in an EoE clinic, they had local patient families and patients that flew in from farther away. The local patients got to see her weekly for feeding therapy. That's when she started doing telehealth.

[8:04] Angelica says the biggest strength of the database is its size. Having 1,400 people and adding every new diagnosis they get at UNC, and every new diagnosis over the past 23 years.

[8:25] There are adult (60%) and child (40%) patients in the database. There is also a good range of social vulnerability among the patients.

[8:42] Ryan notes that one of the findings of this research was that people with higher social vulnerability often experience delays in diagnosis.

[8:52] Angelica says most of the work was postulating on what could be the things that kept people from being diagnosed early, which is important. Angelica hopes that all institutions work to ensure that early endoscopies and biopsies are done.

[9:!2] The new guidelines help. Having that high index of suspicion for everyone, not basing it on demographics or judging by appearance, for whether someone needs biopsies or not.

[9:28] Social vulnerability includes access to care, getting endoscopies and biopsies, having health insurance, and ER care, which is expensive even with insurance. Specialty copays are expensive. Transportation is expensive.

[9:53] Taking time off work can be hard. People take time off to get care for their children, but often not for themselves.

[10:18] Ryan was diagnosed in 2002. Knowledge of EoE was not widespread, but his parents took off work and took him to doctors out of state. They had insurance that covered it. He saw five or six physicians in multiple states before he got a diagnosis.

[10:42] Ryan's situation is not feasible for most people. He says he is fortunate to have gotten to a doctor who had the expertise to diagnose EoE.

[10:51] Ryan says Dr. Emily McGowan was a guest on the Real Talk: Eosinophilic Diseases podcast (Episode 15), speaking on access to specialty care for EoE. She had researched urban and rural populations getting diagnosed with EoE.

[11:05] Her research showed that if you're near a center that can diagnose you, you get diagnosed more frequently, which brings it back to access to care.

[11:19] Angelica's research did not look at the urban/rural divide. That's something that may be a future direction of research. Eighty percent of North Carolina, where the study was located, is rural.

[11:41] The Social Vulnerability Index shows there is the highest vulnerability in more rural areas, especially Eastern North Carolina. Angelica imagines that the urban/rural divide plays a big role.

[11:59] Holly grew up in rural New York. She wasn't diagnosed until her twenties. She had issues, but her parents couldn't take her to be diagnosed. It's reassuring to have someone look into this, because when people do research, things change.

[12:30] Ryan says all of these points make a lot of sense on the diagnostic side. If you are in a more socially vulnerable place, you don't have the resources. You can't go and get that diagnosis.

[12:41] Ryan mentions the study found a difference in symptoms, such as vomiting, nausea, and abdominal pain. Ryan asks what that tells us about how EoE may affect patients differently in these different circumstances.

[12:53] Angelica says the study group was 40% children, and children can present with different symptoms, like belly pain and regurgitation. They're eating different foods and may not be noticing solid foods getting stuck as often.

[13:20] Anglica says there can be a lot of overlap with GERD and EoE. There may be some gut-brain interaction. There's a lot of psycho-social stress among people who have higher social vulnerability. That often manifests with the motility of the GI tract.

[13:56] Angelica says their database doesn't include people who have eosinophilic GI diseases outside of EoE.

[14:13] Holly says the study also showed that patients with higher social vulnerability were less likely to respond to swallowed steroid treatments, even after accounting for factors like age and insurance. Holly asks Angelica to explain this finding.

[14:34] Angelica says this is really important. The way you manage EoE is very patient-specific. The new guidelines give jurisdiction to you, as a patient, and your provider in deciding other things.

[14:51] You can choose dietary therapy first, or topical steroids first. People can take PPIs. They used to be required first, but now they are not. Topical steroids, the ones that you swallow, are common. Cutting out foods from your diet can be challenging.

[15:17] Some people don't love the idea of taking medicine daily in their twenties or thirties.

[15:32] The fact that you would start a patient on something and not see a histologic response opens up the door to follow-up questions of why it is not working.

[15:50] Holly says the pattern wasn't shown in people using diet-based treatments and asks what might explain that difference. She mentions that dietary elimination groceries are expensive, compared to having good insurance covering the medicine.

[16:14] Angelica says Dr. Dellon and part of the group did a study a couple of years ago looking at the cost of dietary elimination for patients. There was a lot of heterogeneity in diet elimination. It wasn't all six food elimination. It was different for everybody.

[16:36] They found that it was cheaper for patients to do elimination diets than to pay for the compounded medicines.

[16:44] Angelica was doing interviews recently for her residency, and a patient told her that when they were first diagnosed, it was hundreds of dollars for their compounded medicine, and they couldn't afford it.

[17:00] Angelica says diet therapy can be different for children versus adults. Adults are sometimes very motivated to try diet therapy. The team wondered if that motivation could influence their outcomes or their ability to adhere to eliminating things.

[17:23] Holly remembers sitting with the social worker at the Children's Hospital of Colorado GDP Clinic, talking about explaining when you're dairy-free, looking at ingredients like whey. There's so much that comes with it. It's confusing.

[17:41] Ryan says he has used swallowed steroids; he's now on a biologic. He's done diet elimination. Groceries are expensive, but there are ways to work around that. Insurance can be frustrating with step therapies, so sometimes diet is the best option.

[18:18] Ryan asks if a delayed diagnosis can impact symptom severity and disease progression, and therefore, the response to treatment options. Is the later diagnosis you see with more socially vulnerable populations playing into the treatment response?

[18:34] Angelica says the delayed diagnosis can lead to a more acute change in the lining of the esophagus, to become more fibrotic and tougher, and the esophagus loses some of its natural flexibility. She says we do wonder if that can be a component of it.

[18:59] Angelica says that's one of the limitations of the study. We need follow-up information to look longitudinally at some of the more recent endoscopies and the outcomes for these patients. She says that's something that we hope to do.

[19:16] Ryan asks about information about disease severity within the data set. Angelica says they have information on the severity scores of patients.

[19:54] The data showed that patients with higher social vulnerability had more of a mixed inflammatory phenotype compared to people with lower social vulnerability.

[20:09] Ryan notes that there are so many different angles to look at. He says in doing research, especially when working with medical charts, you can't get everything for such a large population. What you're able to figure out from all this is so cool.

[20:24] Holly says she was the person who ended up in the ED with a food impaction, and that could have been avoided. She loves that Angelica is researching it.

[20:44] Holly asks what the key takeaways are for clinicians from this research.

[20:54] Angelica says a key takeaway for all clinicians caring for people with EoE is that you have to take into consideration the vulnerabilities that patients are navigating. We operate within a complicated health system that needs to be more efficient.

[21:14] Angelica says you get more messages daily and have a lot of competing needs. It can be easy to assume that this patient in front of me is doing well enough and has access to what they need to be supported.

[21:31] Patients having space to ask a question about something important to them can be validating and affirming. Whether patients want to share at that encounter, or at the next. It normalizes that we humans need help navigating life, because it's hard.

[22:20] Holly talks about providers sitting down with you and asking if you have access to drive to this specialty pharmacy, or if you live in a home where this medicine can be delivered to you safely. It's nice to have someone ask what's going to work best for you.

[22:49] Angelica agrees. She says the Social Vulnerability Index can be incorporated into Epic. You can look at a high score and make sure the patient has a social worker and care management. Make it standard procedure to discuss it with patients.

[23:10] Ryan explains to listeners that Epic is where all patient information and records are stored. Holly mentions that her office doesn't have Epic, and she misses having electronic medical records.

[23:34] Ryan says as a patient, it's impactful that his healthcare team considers his life outside the doctor's office and that he is sticking with his care and can find care that works well for him.

[24:11] Angelica says it's important that patients understand that the spaces they are in outside the clinic do impact their health. Up to 80% of our health is influenced by things outside of the hospital and clinic, like health behaviors, exercise, smoking, and alcohol.

[24:36] Angelica says your physical environment is so important: the quality of your housing, your carpet, the pollution in your air, working in a factory, working with animals, that's important to consider.

[25:00] Angelica says your general stress level is important. That can be worse when you live in an environment that's very noisy or where you don't feel physically safe. Those are very important things to share with your doctors.

[25:25] Ryan speaks of research he does on California wildfires, where the power might be turned off for days at a time to avoid starting fires, which can spoil refrigerated foods or medicines that are difficult to replace. Where you live has major impacts.

[26:31] Angelica says something we want to do is to look at a pooled subset of around 80 patients to see what is going on with their swallowed steroid treatment. You can discern quite a lot from a chart review by the questions patients send to their team.

[26:56] Questions might be things like confusion about how to take the medication, any trouble with insurance claims, or if the medicines are touching the throat the way they're supposed to be. Is the throat not getting adequate exposure to the medicine?

[27:20] A thought the team had was that if there's increased chronic stress, that increases the allostatic load, and that can impact total inflammation. Will that make the mucosa in some people inherently resistant, and do they need bigger doses to treat the disease?

[27:42] Angelica says we're also going to incorporate the jobs they are working and the potential exposures they have there. How far they live from UNC Main, and if they are living in a rural county or not. They are trying to identify specific areas to help patients.

[28:08] Ryan speaks of the benefits and drawbacks of integrating AI into patient records. In chronic cases, the AI summaries are skimming over important details.

[28:45] Angelica says they are using AI at UNC, a lot of times when people are being admitted to the ED. It's also being used in the clinic. Angelica sees that AI edits out important details of a patient's social history.

[29:27] Holly says her office is trialing an AI, and she has learned she can teach it what is necessary to include in the notes. It can be good if you use it appropriately and train it.

[30:03] Ryan says his father recently had a prescription denied because the AI said he didn't have the disorder. He was diagnosed 20 years ago. It took several phone calls to override the AI and see in his chart that he needed this medication.

[30:54] Angelica says she hopes that this study can be the beginning of a conversation.

[31:00] Health equity is important in all of medical care. Angelica hears more about it in a primary care setting. She looks forward to health equity becoming the core of GI and liver diseases and to how we approach that care.

[31:20] Having the conversation can be the beginning of advocacy. It will be the beginning of having medications be more affordable, so you do not have to try and fail so many medications before you get the one that works for you.

[31:40] Angelica says every hour of not having the medication that works for them is hard for people. This research was a relatively simple project that answered some very important questions and left us with many more important questions to answer.

[32:00] Angelica hopes it shows the feasibility of using these tools that we already have in the community, to start making everyone's health better, and not just people who have access.

[32:15] Ryan says we're excited that you're here talking about this with us. We'd also like to congratulate you on receiving an award last year at Digestive Disease Week.

[32:23] It was an honor to recognize you with the American Gastroenterological Association APFED Abstract Award for your outstanding research that we've been discussing today.

[32:31] The abstract, "Increasing Social Vulnerability Impacts Presentation and Decreases Treatment Response in Eosinophilic Esophagitis," was selected in recognition of its significant contributions to the field.

[32:47] Angelica says it was such an honor. It means a lot to her because she conceptualized and executed this project, with so much support from Dr. Dellon and the larger EoE Group. She says she couldn't have done it without them.

[33:05] Angelica says, most importantly, the project was a small win for health equity. She hopes that it starts a lot of important conversations and that we continue to be more attuned to the social drivers that impact our really vulnerable patient population.

[33:30] Angelica's final words: For patients, caregivers, and loved ones, I encourage you to ask questions. There are no stupid or silly questions. If you feel silly asking, how you feel is valid, but it's really important that you get your questions answered.

[33:55] It's OK to say you don't know what questions to ask. You are the expert on what you need and what is important to you. Ask questions, and say when you don't know what to ask.

[34:40] Holly thinks that's great for people with a new diagnosis, or children. Ask, what would you ask, if you were in my shoes?

[34:54] Ryan thinks this is a great start for listeners who are newly diagnosed. If you'd like to learn more about eosinophilic disorders, we encourage you to visit apfed.org and check out the links in the show notes.

[35:09] If you're looking for a specialist who treats eosinophilic disorders, we encourage you to use APFED's Specialist Finder at http://apfed.org/specialist.

[35:18] If you'd like to connect with others impacted by eosinophilic diseases, please join APFED's online community on the Inspire Network at http://apfed.org/connections.

[35:28] If you've been personally impacted by eosinophilic disorders and are interested in sharing your experience, please check out http://apfed.org/shareyourstory.

[35:37] Ryan thanks Angelica for joining us today. This was a super insightful conversation. Angelica thanks Ryan and Holly for having her on. It was a pleasure getting to talk today.

[35:54] Holly thanks Angelica and also thanks APFED's Education Partners GSK, Sanofi, Regeneron, and Takeda for supporting this episode.

Mentioned in This Episode:

APFED on YouTube, Twitter, Facebook, Pinterest, Instagram

Real Talk: Eosinophilic Diseases Podcast

Apfed.org

https://apfed.org/specialist

https://apfed.org/connections

http://apfed.org/research/clinical-trials

Angelica Lackey Mirzoca, MPHhttps://pubmed.ncbi.nlm.nih.gov/41551662/

https://apfed.org/blog/may-2025-research-roundup-ddw-edition/

https://gastro.org/news/introducing-the-2025-aga-research-foundation-awardees/

Education Partners: This episode of APFED's podcast is brought to you thanks to the support of GSK, Sanofi, Regeneron, and Takeda.

Tweetables:

"When I was growing up, my Dad had Barrett's Esophagus. I saw him choking a lot when he was swallowing. It was really scary. And so, being in the EoE space…was really important and attractive to me." — Angelica Lackey Mirzoca, MPH

"We used the CDC's Social Vulnerability Index in the study. It's a 16-variable composite score with four overarching themes. It's down to the Census Track level. You can associate it with patient zip codes." — Angelica Lackey Mirzoca, MPH

"Health equity is core to everything I do. Having the opportunity to participate in the EoE research, I felt it was important that we considered the social vulnerability, or people's lived reality, and how that impacts their ability to access care." — Angelica Lackey Mirzoca, MPH

"Most of the work was postulating on what could be the things that kept people from being diagnosed early, something that's really important." — Angelica Lackey Mirzoca, MPH

"I encourage you to ask questions…It's OK to say you don't know what questions to ask. You are the expert on what you need and what is important to you. Ask questions, and say when you don't know what to ask." — Angelica Lackey Mirzoca, MPH

Guest Bio:

Angelica Lackey Mirzoca, MPH

Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED's Health Sciences Advisory Council, interview Jessica Grady, a patient advocate living with EoE.

Disclaimer: The information provided in this podcast is designed to support, not replace, the relationship between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.

Key Takeaways:

[:50] Co-host Ryan Piansky introduces this episode, brought to you thanks to the support of Education Partners GSK, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz.

[1:13] Holly introduces today's topic — eosinophilic esophagitis and life transitions — and today's guest, Jessica Grady, a patient advocate living with EoE.

[1:35] Jessica is a mom who was diagnosed with EoE in her 20s, after years of unexplained symptoms: acid reflux, GERD, food impaction, and anxiety around food. For about six years, Jessica searched for answers while dealing with these issues.

[2:00] Since then, Jessica has tried PPIs, steroids, and two clinical trials. She was always interested in the research, so being part of it has been valuable to her. There's a lot of work involved in clinical trials, and it's not easy.

[2:29] Jessica is managing her condition and has hit her second endoscopy with remission, with dupilumab. That's exciting, after her long journey. It has taught her the importance of advocating for yourself and staying hopeful with a chronic condition.

[3:01] After college, Jessica was going out with friends, and had pain almost like ulcers in her stomach. She thought maybe she was going out too much.

[3:20] One day at lunch, water got stuck. Jessica says it was like gargling; it wouldn't go down. Finally, it went down, and she took a bite of food, and that got stuck. That was her first episode. After that, Jessica has had food impactions as her main symptom.

[3:54] Jessica says it's quite a reality check when you're choking on water. How is that even possible? Once that happened, Jessica kicked herself into gear and had an endoscopy.

[4:12] Food impaction is Jessica's number one symptom. She has been to dinners where it happened, and she calmly excused herself from the table until she could finally get the food to go down.

[4:34] As Jessica aged, her food impactions started getting longer. That was terrifying, especially as a Mom needing to take care of her baby.

[4:52] Holly shares how she had symptoms from infancy and all the way through her childhood, and it was diagnosed as anxiety, until she started working in an EoE clinic and recognized her symptoms. Getting an EoE diagnosis is often very challenging.

[5:40] Jessica went to three different hospitals in her area. She didn't know what kind of doctor to look for. She went to a GI, got an endoscopy, and woke up with a fat lip. The doctor told her not to have caffeine and start on PPIs.

[6:11] There was no mention of a biopsy or EoE. She was told she had bad acid reflux and ulcers.

[6:35] The PPIs didn't help. She still had acid reflux and impactions. She was still uncomfortable.

[6:47] Jessica switched to another healthcare system and got closer to the answer, with more endoscopies and testing, but there was no research with it.

[7:02] Finally, Jessica switched to where she is today. There is a doctor and research. They run clinical trials. She gets the latest and greatest updates. She feels like it has helped her get to where she is today.

[7:21] Jessica said the doctor knew what to look for. The moment she described her symptoms, the doctor said it would need to be confirmed with a biopsy, but she has EoE. Jessica asked what now?

[7:34] Ryan says, we hear a lot of difficulty with diagnosis because not all doctors know what to look for. If they see ulcers or other common symptoms that people with EoE have, they can very easily misdiagnose. It's a tricky diagnosis to make.

[8:03] Jessica says that before her EoE diagnosis, doctors told her she had GERD, acid reflux, ulcers, and anxiety around food. They asked what her food choices were and if she was taking too big bites.

[8:12] Jessica asked the doctors why she always needs to have a bottle of water with her, and why she feels panic if there's something like a soft pretzel. They told her she was hyperactive and had anxiety. Jessica felt that that was not making sense.

[8:40] That is why Jessica feels it is so important to advocate. There's a lot of time involved when you're misdiagnosed. You get your hopes up and have lots of highs and lows. It's exhausting.

[8:53] Ryan says that when you do get diagnosed, you can start to treat the underlying condition properly, make progress, feel better, and feel like you're being listened to.

[9:30] Jessica's current course of treatment is PPIs and dupilumab. She's learned her food triggers. Being on the biologic means she doesn't have to worry as much about her triggers, but they can still cause symptoms. She doesn't eat nuts or pineapple.

[10:16] Jessica used to eat cottage cheese if she had acid reflux, but now she knows dairy is one of the worst things to have. She does her best to be mindful. She's really thankful that she's in remission now and can be like everyone else at the dinner table.

[11:04] Holly mentions that there are many trigger foods. It's patient-dependent. Dairy is the number one trigger, but we all have different little triggers, like pineapple. Holly's EoE is triggered by any melon. Ryan's EoE is triggered by apples and rice.

[11:48] Holly avoids all trigger foods for fear of an impaction or throwing up.

[12:27] Jessica says, if she wants to have an ice cream cone and live her life like everyone else, she will, but then she has guilt and wonders if it will do something to her later. She limits the high-allergy foods. If she has ice cream, she won't have cheese.

[13:06] Jessica monitors her food as much as possible. Her GI tells her that, since she's in remission, she doesn't need to be that careful. But she has anxiety because you never know if she will have a problem.

[14:21] Jessica's GI had told her that she was only allergic to a few nuts and she could try other kinds of nuts. She tried cashews once and had a reaction. She reported it to her GI, and then he told her to avoid all nuts.

[14:47] Jessica recently went to her allergist to be retested for common allergies. The tests came back negative for every allergy. She doesn't know if that was because of being on the biologic treatment.

[16:01] Jessica's profession is clinical trial technology. That helped her to understand what a clinical trial is, how to enroll, and patient recruitment. When she went to a hospital with GI research, she asked about it. They had openings, and she enrolled.

[16:33] Jessica was interested in clinical trials because she was desperate for options and answers. Also, the cost of endoscopies adds up. Clinical trials are free. Sometimes you get paid. That was a big win for Jessica.

[17:09] When there was an option for a new treatment, she jumped at it both times. She participated in two trials. She didn't make it through them.

[17:21] In the first trial, Jessica's biopsies had two out of three criteria the trial was looking for, although she had active EoE.

[17:33] In the second trial, Jessica had a provision device she used to write a daily diary entry in. She was pretty far in, but then she had tech issues and emailed for help. That's not part of the protocol. If your diary is not logged correctly, you are out of the trial.

[17:57] That trial was an oral medication. She doesn't know if she was on the placebo or not. Jessica is always open to trials. She thinks they are very beneficial.

[18:46] After leaving the first trial, when Jessica's biopsies didn't meet the criteria, Jessica asked the clinical research nurse to keep her in mind for future trials, so she learned of the second trial.

[19:07] Jessica says she put a lot of time and effort into the second trial, with check-ins and multiple endoscopies, until she was dropped from it. It was challenging and very disappointing when she was dropped from the second trial. She was hopeful.

[19:40] At that point, Jessica changed course and started corticosteroid treatment. The inhaler didn't work. Then she did the slurry mix, and that didn't work, and then she did the injections.

[20:09] Ryan notes that Real Talk has talked to many researchers who have run clinical trials. Every time, they say they are so grateful for the community volunteering their time.

[20:21] They're very aware that some difficulties and challenges come up. Not all patients can make it to the end of the trial, whether that's on the research side or on the patient side.

[20:34] Ryan says the eosinophilic-associated disorder community, in general, is so willing to volunteer their time and participate in these things, and further research for the overall community. Ryan says it's good to hear that Jesica tried to participate.

[21:01] Jessica says she thinks it's valuable. She recommends that anyone who is interested should look into it, especially if you know you have something that's for the rest of your life. What do you have to lose?

[21:12] Jessica says she has something that can't be cured, so what is she going to do? She wants to be the tester. She wants to find something to help her. She doesn't want to choke anymore.

[21:29] Jessica wasn't a mom when she started in these clinical trials. Now she is a mother of two; she explains what conditions she would require to participate in another trial. She wants the opportunity for telemedicine visits except for when she needs a test.

[23:43] There are a lot of challenges. Jessica says that's why she is so passionate about patients and getting therapies to them. It's hard to try to do it all.

[24:24] Jessica was able to get off dupilumab when she was pregnant. She had acid reflux but no other symptoms, choking episodes, or food impactions during her pregnancy.

[25:05] Three months post-partum, it came back with a vengeance. Jessica had her first food impaction that was over 40 minutes. Earlier food impactions had been for seconds or a few minutes. It was terrifying.

[25:27] At three months post-partum, Jessica had to go back on dupilumab. No one could tell her it was safe for her child while breastfeeding. The doctor said it should be digested. It should be OK. "Should" is hard for a post-partum new mother to hear.

[26:08] In Jessica's second pregnancy, she confidently got off dupilumab again, and everything was great. Exactly three months after the birth of the second baby, she had a 45-minute food impaction.

[26:24] She thought she had to go to the ER. She was at the sink trying to get the food up, while her husband took care of the children. Finally, she recovered from the food impaction.

[27:12] Jessica had some spare dupilumab in the refrigerator from before her pregnancy. She called her GI, said she needed to go back on the dupilumab, and started it that day. On dupilumab, she hasn't had a food impaction since.

[27:52] Jessica looks at dupilumab as her lifeline. She gets to be like everybody else when she's on it. She is blessed and thankful for it. It wasn't approved for EoE until 2022. It has been a long ride to figure out how not to choke.

[29:06] Jessica advises people starting a family to make sure they have a care plan in place. Your doctors, family, and others need to be aware of and understand what's going on with you.

[29:19] Make sure that you're communicating. This is especially important for a woman with a GI and an OB. Make sure everyone's speaking the same language. When it comes to GI and allergy, Jessica wants to ask if they can get together on a call.

[29:41] Prepare safe and easy foods for post-partum. People may be dropping off food. Be mindful of what is safe for you to eat. Ask for a lot of help and try to have your care plan together.

[29:57] Jessica was having calls with her GI doctor when she was planning, once she was pregnant, during pregnancy, and post-partum. There was never a time when she wasn't doing check-ins to primary care, allergy, and GI.

[30:14] Have a care plan and know your trends. Jessica didn't realize the post-partum choking episode would repeat after the second birth. She thought it was a one-off.

[30:38] If you have an episode, your body is telling you something. Follow the protocol you made for yourself.

[30:47] Once that food impaction happened the second time, Jessica knew exactly what to do because it had happened before. The problem was that she hadn't been proactive in starting on dupilumab before the food impaction happened.

[31:03] Jessica says her first dilation could only get to 12, so she had to have a second dilation to get to a normal 15.

[31:29] Jessica says she thought she was immortal. It only happened once; she supposed it wouldn't happen again.

[32:16] Holly says she loves to travel. When she travels, she brings along a medical emergency kit. The quality of life matters.

[32:36] Jessica watches for signs of EoE in her children. They're not showing signs of it. Anything could happen, and she takes it day by day. If the time comes and it happens, Jessica will know what to do, rather than going in clueless.

[34:44] Ryan says his parents didn't believe he had EoE before he was diagnosed.

[35:08] Jessica's last words: I would say the most challenging part of living with EoE is the unpredictability and not knowing, and the lifelong illness with that. You've got to be comfortable in the unknown.

[35:23] There's a lot of innovation and research right now, so I think more answers are coming. Be aware. See what's going on. Be more in tune with yourself. If you feel like things are happening, be mindful of that. Be comfortable knowing that it's unpredictable.

[35:50] That's the most challenging part of having EoE. Always trust your gut. Advocate for yourself. It took me years to get answers, but persistence is what got me there.

[36:05] Ryan says, that's a great outlook. Keep looking for new answers. Take it one step at a time. Be mindful and on the lookout.

[36:14] Ryan thanks Jessica for joining us today and sharing about your experience and your journey with EoE. I think this will be a super helpful conversation for our listeners.

[36:22] For our listeners who would like to learn more about eosinophilic disorders, please visit apfed.org and check out the links in the show notes.

[36:29] If you're looking to find a specialist who treats eosinophilic disorders, we encourage you to use APFED's Specialist Finder at http://apfed.org/specialist.

[36:37] If you'd like to connect with others impacted by eosinophilic diseases, please join APFED's online community on the Inspire Network at http://apfed.org/connections.

[36:48] Ryan thanks Jessica for joining us today. This was a great conversation. Jessica thanks Ryan and Holly for having her on.

[36:59] Holly thanks Jessica and also thanks APFED's Education Partners GSK, Sanofi, Regeneron, and Takeda for supporting this episode.

Mentioned in This Episode:

APFED on YouTube, Twitter, Facebook, Pinterest, Instagram

Real Talk: Eosinophilic Diseases Podcast

Apfed.org

https://apfed.org/specialist

https://apfed.org/connections

http://apfed.org/research/clinical-trials

Education Partners: This episode of APFED's podcast is brought to you thanks to the support of GSK, Sanofi, Regeneron, and Takeda.

Tweetables:

"I'm managing my condition and have hit my second endoscopy with remission, with dupilumab." — Jessica Grady

"It's quite a reality check when you're choking on water. How is that even possible? Once that happened, I kicked myself into gear and had an endoscopy." — Jessica Grady

"If I want to have an ice cream cone and live my life like everyone else, I will, but then I have guilt and wonder if it will do something to me later." — Jessica Grady

"I advise people starting a family to make sure they have a care plan in place. Your doctors, family, and others need to be aware of and understand what's going on with you." — Jessica Grady

"I would say the most challenging part of living with EoE is the unpredictability and not knowing, and the lifelong illness with that. You've got to be comfortable in the unknown." — Jessica Grady

"There's a lot of innovation and research right now, so I think more answers are coming. Be aware. See what's going on. Be more in tune with yourself. If you feel like things are happening, be mindful of that. Be comfortable knowing that it's unpredictable." — Jessica Grady

Guest Bio:

Jessica Grady, Patient Advocate

Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED's Health Sciences Advisory Council, interview Beth Morgan, a medical billing advocate and consultant, on navigating your medical bills.

Disclaimer: The information provided in this podcast is designed to support, not replace, the relationship between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.

Key Takeaways:

[:51] Co-host Ryan Piansky introduces this episode, brought to you thanks to the support of Education Partners GSK, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz.

[1:12] Holly introduces today's topic, Medical Billing, and today's guest, Beth Morgan, a medical billing advocate and consultant.

[1:31] Beth says a medical billing consultant is an individual who assists someone with medical bills to make sure that they are accurate and correct, and that they match the medical records, which are notes that the provider makes.

[1:48] The medical billing consultant or advocate can make sure the bills are paid correctly and that the charges are within the reasonable prices for the treatment area.

[2:19] Beth explains how medical insurance covers healthcare costs. It protects the patients and providers from very high expenses. It can also possibly help with the stress of navigating healthcare systems.

[2:36] The goals of medical insurance are to help cover patient costs for treatments, preventive care, and prescriptions. It can also provide resources for telehealth visits or support visits, if needed.

[2:48] With a telehealth visit, you, the patient, have to make sure that your insurance plan covers and allows it. Sometimes, the cost of a telehealth visit can be more than if you were to go to the office.

[3:27] Beth says most people look at what insurance will cost them per month. They fail to look at their yearly deductible, per person or per family, their prescription costs, or what it will cost to see a specialist. They don't consider what therapies will cost them.

[4:08] Beth had a client whose insurance company would only cover in-state providers. If she went out of state, she wouldn't be covered; even an emergency might not be covered. You have to look at the "nitty-gritty" of the policy.

[4:32] Beth says the biggest things are the deductible and copay, or co-insurance. Don't just look at the cost. Most people will take out the $10,000 or $5,000 deductible plans, saying it only costs $75 for the entire family. What does it actually cover?

[5:00] You don't want sudden surprises when you get to the emergency room. You want to know what your copay will be when you go into an emergency room.

[5:11] Holly agrees with Beth and notes that Real Talk listeners have chronic illness. Some have multiple illnesses. When you're selecting insurance plans, those are the things you have to look into.

[5:27] Patients with EoE often need endoscopies and other specialized procedures. Holly asks for tips on how someone can know what an endoscopy or other procedure will potentially cost.

[5:41] Beth says to ask the doctor what the CPT code is. That's the code that describes the treatment. Then look up that CPT code on the insurance company website. They will show an estimated cost for that treatment, for a rough idea of the cost.

[6:10] Keep in mind that it will not tell you what the providers will charge or what the hospital fee will be.

[6:21] Holly says she has EoE and MS. She asks a social worker for the CPT code for every procedure so she has a record to double-check when the bill comes. The CPT code is the key.

[6:50] Holly is a speech pathologist who does feeding therapy. She says to look at your plan to see if therapy is a copay or if it goes toward your deductible. If it goes toward your deductible, it will be very expensive until you meet that deductible.

[7:10] People living with an eosinophilic disorder may find themselves in the ER for a variety of reasons. Holly was there this week with a food impaction. For others, it could be a pain flare or an asthma attack.

[7:26] Holly asks how families can be prepared for medical bills related to emergency care.

[7:40] Beth replies, You also have on that bill the ER doctor and the ambulance fee, including mileage, which must be accurate or rounded up to the next mile. Track the mileage in your car.

[8:43] Who will be transporting you: volunteers from the fire department, a hospital ambulance, or an outside ambulance? Are you going under Basic Life Support or Advanced Life Support?

[9:05] Once you get to the ER, have someone else with you who can advocate for you. Sometimes, staff will bring you forms to sign before they treat you. If you're in a lot of pain, you're not in your right mind to sign those forms; you're only thinking of your pain.

[9:53] Ryan says a friend of his went to his doctor's office for a prescription refill. Typically, he pays a $25.00 copay per visit. This prescription refill visit was not covered in the same way as other visits, and he received a bill for over $200. The insurance company only covers maintenance appointments.

[10:48] Beth says an Explanation of Benefits (EOB) comes from your insurance company. It shows what the doctor charged, what the insurance company paid, and what you owe.

[11:07] A medical bill is what your provider sends you. Beth always asks the provider to send the bill after the insurance company has paid. That way, you know the insurance company has paid on the bill, and there are no surprises.

[11:25] When the provider bills you, the insurance company may have paid something on it, or it may have applied the bill toward your deductible or copay.

[11:44] When a patient receives a provider bill, Beth says they can go to a company called FAIR Health to see today's rates of what should be charged. Insurance companies negotiate rates with providers.

[12:04] Beth says that an out-of-network provider of physical therapy can charge, for example, $160 a visit, and you have to pay out-of-pocket. They can send it to your insurance company, and the insurance company may only pay 30% of the charge.

[12:20] Call the insurance company to ask questions about your insurance. Utilize the estimated costs feature on your insurance company's website.

[12:32] Beth says she always keeps the page of her health insurance booklet that shows what a PCP office visit, or outpatient specialist visit, will cost. Most people get the book and toss it out, but that page is very helpful.

[12:53] If you go into the emergency room, you might have a $300 copay just to be seen, but if you ask them to bill you after they bill your insurance company, most places should respect that.

[13:11] Beth says that most of the time, the red flags that she looks for on medical bills are supply items. Most supply items are included in the cost of the hospital visit. She says a surgical hospital visit is like an oil change.

[13:42] Beth compares a surgery to an oil and filter change. When you go in for surgery, the drape they put over you is included. You only pay for the supply items you walk out with.

[15:15] Beth says, If there's something wrong on your medical bill, your insurance rep may not know the answer. Most insurance companies have outsourced their billing questions. Start with the billing department of the hospital.

[15:35] Ask, "Why did you bill me for an X, Y, Z, when I didn't have an X, Y, Z? I had an A, B, C. Can we re-examine this, please?" Another thing is to go back to your provider.

[15:52] The provider can request medical notes, which are part of your patient record, and you can look at them yourself. Beth says, for hospital stays, she always tells people to ask for a completely itemized bill.

[16:12] Holly agrees.

[16:20] Beth says you have to look at the itemized bill. Does something make sense to you? Does it look a little unreasonable? That's easy to see.

[16:26] Ryan says when you call your insurance company, it can be time-consuming to reach the person who can answer your question, but it's important to do so, especially for expensive things like hospital stays. Doctor's office visits can also be expensive.

[16:58] Something else that can be tricky is medications. Especially for those of us with chronic illnesses and the rare diseases that we work with here at APFED, costs can be quite high for some of the medications patients take.

[17:20] Beth says, When you call the insurance company, ask for the name of the person you are talking to. Write down the name, date, and time that you spoke to the person. Ask them for a call reference number, where they are located, and what was discussed so you have record of that information.

[18:04] For medications, you can look up prices through GoodRx or other prescription websites that might give you an estimate of what the possible cost could be.

[18:20] If your provider states on the prescription, Do not substitute or give generics, you might be paying full price. Otherwise, most pharmacies will offer you the generics.

[18:35] Holly asks, If someone feels overwhelmed by billing or insurance issues, where can they go for help? Are there resources that you recommend?

[18:45] Beth says, There is a patient advocate group, with individuals across all 50 states, that will help you with medical bills and advise you on everything else. Your provider's office or the facility also might have someone who could help you.

[19:11] Beth says she would look for patient advocates like social workers. Make sure whoever you work with has medical knowledge.

[19:26] Ryan says, talking with the billing department can feel a little antagonistic, but they are there to help you. If you talk to the right people and ask the right questions, you can figure out what's going on and get some answers.

[19:40] Beth agrees and says, Always write down your questions. Ryan adds, Always write down the answers and ask the name of the person you are talking to. Beth reminds you to ask for the call reference number. They keep a record of every call.

[20:09] Beth's last words about medical billing: "The most important thing is keeping track of what's going on. I recommend using a calendar, like a planner, that you can write 'I saw Dr. J. Smith, EoE Specialist. Discussed flare-ups,' and the time and date."

[20:30] "Keep a record. That way, in this planner, you can go back to it and match it up. If possible, have someone with you or on the phone with you when you talk with them. The other person can take notes, which is very important."

[20:39] "You need to have the backup and the understanding. If you don't understand something, ask questions." Ryan says, Those are good tips for everyone.

[21:14] For our listeners who would like to learn more about eosinophilic disorders, please visit apfed.org.

[21:20] To learn more about navigating healthcare in the United States with eosinophilic disorders, please check out http://navigateeoscare.org. We'll include links to both of those in the show notes below.

[21:29] Ryan thanks Beth Morgan for joining us today. This was an insightful conversation for everyone. Beth thanks Ryan and Holly for having her on.

[21:35] Holly also thanks APFED's Education Partners GSK, Sanofi, Regeneron, and Takeda for supporting this episode.

Mentioned in This Episode:

Beth Morgan, President & CEO of Medical Bill Detectives

http://navigateeoscare.org

Patient Advocate Foundation

APFED on YouTube, Twitter, Facebook, Pinterest, Instagram

Real Talk: Eosinophilic Diseases Podcast

Apfed.org

https://apfed.org/specialist

https://apfed.org/connections

http://apfed.org/research/clinical-trials

Education Partners: This episode of APFED's podcast is brought to you thanks to the support of GSK, Sanofi, Regeneron, and Takeda.

Tweetables:

"Medical insurance covers healthcare costs. It protects the patients and caregivers from very high expenses. It can also possibly help with the stress of navigating the healthcare systems." — Beth Morgan

"Most people look at what insurance will cost them per month. They fail to look at what their yearly deductible might be, per person or per family." — Beth Morgan

"Ask the doctor what the CPT code is. That's the code that describes the treatment. Then go to the insurance company's website. Most insurance plans have it. They will give you an estimated cost for that." — Beth Morgan

"Keep a record. That way, in this planner, you can go back to it and match it up. If possible, have someone with you or on the phone with you when you talk with them. The other person can take notes, which is very important." — Beth Morgan

"For hospital stays, I always tell people to ask for a completely itemized bill." — Beth Morgan

"I would look for patient advocates like social workers. Make sure whoever you work with has medical knowledge." — Beth Morgan

Guest Bio:

Beth Morgan, President & CEO of Medical Bill Detectives, has been a Certified Professional Coder (CPC) and Compliance Specialist (MCS-P) since 2004. Over the past 20 years, she has worked in several areas of the medical profession, doing billing and coding for all sorts of providers. Her knowledge and expertise have enabled her to not only reduce providers' accounts receivable but also medical bills by 51%. She has access to a broad base of insurance company policy information and is an information contributor to radio and TV shows, as well as magazine articles. Medical Bill Detectives reviews medical bills for errors and overcharges, reducing them to Usual Reasonable and Customary charges, for negotiating discounts on medical bills. We are able to review bills for all 50 states.

https://aphadvocates.org/speakers/beth-morgan/

https://www.seakexperts.com/members/7326-beth-morgan

Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED's Health Sciences Advisory Council, interview Fei Li Kuang, MD, PhD, an allergist and immunologist, at Northwestern Medicine, about receiving two APFED HOPE on the Horizon Grants.

Disclaimer: The information provided in this podcast is designed to support, not replace, the relationship between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.

Key Takeaways:

[:50] Co-host Ryan Piansky introduces this episode, brought to you thanks to the support of Education Partners GSK, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz.

[1:14] Holly introduces today's topic, two APFED HOPE on the Horizon Pilot Grant Projects and today's guest, Fei Li Kuang, MD, PhD, an Assistant Professor in the Division of Allergy and Immunology at Northwestern University Feinberg School of Medicine in Chicago, Illinois.

[1:42] Dr. Kuang is a physician-scientist who takes care of patients with eosinophilic disorders and also performs laboratory research on these disorders in her lab, often using patient samples. Holly thanks Dr. Kuang for joining us.

[2:05] As a child, Dr. Kuang always wanted to be a scientist. She is so grateful to live out her childhood dream, and it's because of the amazing people who have supported her, most importantly, her parents.

[2:29] In graduate school, Dr. Kuang studied B cells. When she went on to do an allergy fellowship, she thought she would study B cells and care for patients with B cell problems. Instead, she fell in love with allergy and eosinophilic disorders.

[2:50] Dr. Kuang is here, in part, because of the different mentors she has had, and in large part, because of the patients she has met along the way.

[3:20] Dr. Kuang had the opportunity to work with Amy Klion at the NIH in a clinical trial to treat patients with a drug that gets rid of eosinophils. She says it was a dream come true after her training.

[4:02] She says she learned so much about eosinophils, their unusual biology, and the mystery behind what they are here for. She got hooked.

[4:15] Dr. Kuang thinks the patients you meet in a clinical trial in a special place like NIH occupy a space in your heart that makes you want to keep working on the subject area.

[4:34] Patients in a clinical trial have given up a bunch of their time to travel to Bethesda, Maryland. For the trial Dr. Kuang participated in as a Fellow, it was a good year of their time to come out and do it.

[4:47] Dr. Kuang felt there were so many interesting questions, from an intellectual point of view, but there was also a real need from patients with chronic conditions. It was a beautiful opportunity to marry scientists with physicians in training.

[5:36] Dr. Kuang shares some knowledge about eosinophils. They are white blood cells that are in all of us. They have little pink packages or granules that "jumped out" in the light microscope almost 200 years ago, when we first identified them.

[6:00] Dr. Kuang says that animals, dating back to reptiles, and different species of dolphins, all have eosinophils. A veterinary scientist, Dr. Nicole Stacy of the University of Florida, has taken photos of eosinophils from all these different species.

[6:21] They've been around for a long time. What are they good for? What we know is that they are associated with disease conditions, such as asthma and others, including leukemia. Those were the classic first studies of eosinophils.

[6:42] Now, we have a different mindset about eosinophils from work by the late James Lee at Mayo Clinic, Arizona.

[6:58] Dr. Kuang credits Dr. Lee with suggesting that eosinophils not just cause us problems but also help treat parasitic infections, maintain tissue homeostasis, help wound healing, and tissue repair. That's a new area we are beginning to appreciate.

[7:41] Dr. Kuang says we need to be open-minded that in some circumstances, eosinophils may be helpful or innocent. Now we have tools to start to understand some of that. We need to collect information from patients being treated with medicines.

[8:10] Ryan tells of being diagnosed as a kid. Doctors explained to him that eosinophils fight parasites, but in some people, they get confused and attack the esophagus. That's EoE. That was easy to understand, but he knew that the researchers knew more.

[8:53] Ryan is grateful to the patient population around eosinophilic esophagitis, and is proud of APFED's support of patients and caregivers with HOPE Grants. APFED has the HOPE on the Horizon Research Program, entirely funded by community donations.

[9:13] To date, APFED has directed more than $2 million toward eosinophilic disease research initiatives through various grant programs. As a patient advocacy organization, APFED works with fantastic researchers who submit innovative research ideas.

[9:32] These research ideas go through an extensive and competitive peer-review process, supported by researchers and clinicians in the APFED community.

[9:42] Today, we're going to discuss two different projects supported by HOPE Pilot Grants with Dr. Kuang.

[10:00] Dr. Kuang thinks there are two ways these grant programs are important to patients. One is advancing research by nurturing seedling investigators. Dr. Kuang got her first grant when she was a Fellow. It was an incredible opportunity.

[10:25] These grant programs also nurture seedling ideas that don't have enough evidence yet to garner the larger NIH grants, and so forth. There are other sources for grants: pharmaceutical companies. The grant programs are for seeds.

[10:49] Patients need to know that there are new things that are given some chance of being tested out. Research takes some time, and the FDA process of getting a drug approved is long.

[11:04] For the newly diagnosed patient, it can feel overwhelming. It feels like there's a loss of control. Sometimes, participating in something like APFED, being part of a community, gives back a sense of control that is lost when you're handed a diagnosis.

[11:45] For patients who have had it for a long time, when they participate in research and become engaged in organizations like APFED, they know they may not directly benefit today, they may benefit later, but they hope future patients will benefit.

[12:21] That gives them a sense of control and hope that things will be better for the next generation. We all want that, especially in medicine, in something that we don't have a very deep understanding of.

[12:58] Dr. Kuang received two HOPE Pilot Grants, one in 2018 and one in 2022. The first grant was awarded when she was a Fellow at the NIH.

[13:05] That first grant explored some effects of eosinophilic depletion of pathogenic lymphocytes in hypereosinophilic syndrome and overlaps with EGIDs. Ryan asks for a broad overview of that research.

[13:25] When Dr. Kuang was a Fellow at the NIH, they were doing a Phase 2 clinical trial, looking at "blowing up" eosinophils in patients who have a lot of them, hypereosinophilic syndrome patients.

[13:39] They included patients who had eosinophilic GI disease, often beyond the esophagus. They may have esophageal involvement, but sometimes their stomach is impacted, sometimes their large bowel is impacted, with related symptoms.

[13:57] What Dr. Kuang and the team noticed in the trial was that just within that little group of patients, there were people who did well, and people who did much better than before, but would have recurrent symptoms, and with no eosinophils in their GI tissues.

[14:16] The researchers wanted to know what was causing these problems for the patient. If you take eosinophils away, what other factors will impact the immune system of the patient, semi-long-term?

[14:32] Their focus was on these groups of patients who had different responses. They looked at the white blood cells that had been previously described as being the responsible, "bad" T cells that lead to eosinophils in the gut.

[14:49] They found that the patients who had recurrent flares of the disease had more of the bad T cells, and the patients who responded well and never complained again about symptoms did not.

[15:03] That allowed researchers to identify that there were subsets of patients with the disease that they were calling the same thing.

[15:18] Dr. Kuang says that work also led them to find that those cells were being reported in patients who had food allergies for which they needed an epinephrine auto-injector.

[15:27] The researchers were curious whether that was just a food allergy issue, or only applied if you had food allergies and eosinophilic GI disease. That HOPE project allowed them to do a pilot study to look at food allergy patients, too. They did, and published it.

[15:45] They published that in patients who have a food allergy and have these T cells, the insides of those cells make different messages for the immune system than the ones that the researchers had previously described.

[16:01] In looking for why there were differences in those responses, they accidentally found that there were differences inside these cells in a completely different disease, which also had these T cells.

[16:21] Dr. Kuang says that the finding was kind of a surprise. If they had found anything in the eosinophilic GI disease patients, that would have been good. They also looked at the epithelial cells and the structure of the GI lining.

[16:42] Even though there were no eosinophils in the GI lining in the patients who had been treated with a biologic that depleted eosinophils, their GI lining still looked like the GI lining of patients who had eosinophilic GI disease.

[16:55] Dr. Kuang asked what was creating those spots. Our gut lining sheds, so there should have been an opportunity for the GI lining to turn over and look new. Something was there, making signals to create these spots. They did a different publication on that.

[17:21] The data from the HOPE Pilot study allowed Dr. Kuang to apply for larger grants. It allowed her to propose to the company that made this drug, when they did the Phase 3 trial, to insert into that special study the study on eosinophilic GI disease.

[17:48] Do patients with eosinophilic GI disease do better or worse on this drug, and how do the T cells look in that trial? That HOPE Grant gave Dr. Kuang the data to ask the drug company to give her money to study it in an international cohort of patients.

[18:17] There were only 20 patients in that first NIH trial, who gave a year of their life, coming to NIH all the time. They continued to be in the study until the drug was approved for asthma.

[18:28] Dr. Kuang says the main reason the company did the Phase 3 trial, which is expensive, and the market share is not huge because it's a rare disease, is that two of the patients went to bat for this disease population.

[18:47] The two patients went and showed the business people what they looked like before, what the drug had done for them, and how their lives had changed. It wasn't the doctors or the great paper from the trial, but the patients who convinced the company.

[19:01] Dr. Kuang says she was so floored by that and moved by what they did for the community. She is grateful.

[19:24] Since the Phase 3 trial, Dr. Kuang and the other researchers realized they had not fully studied the eosinophils. They had studied them in part. They found differences in response. This inspired the second APFED HOPE Pilot Grant.

[21:19] In 2022, Dr. Kuang received a two-year APFED HOPE Pilot Grant to examine how blood eosinophils in Eosinophilic Gastrointestinal Diseases differ from those of other eosinophilic diseases and how T cells in EGIDs differ from those in food allergies.

[21:49] Dr. Kuang says normally, the biggest place of residence for eosinophils is the GI tract. That's where they are normally seen in people who do not have eosinophilic disorders.

[21:59] People who have eosinophilic disorders that attack other parts of the body, asthma, and rarely, the heart. Dr. Kuang was curious to know why one person and not the other?

[22:15] Patients who have eosinophilic GI disease often ask, How do you know this high level in the blood is not going to attack my heart or my lungs in the future? Dr. Kuang does not know.

[22:29] Dr. Kuang says, looking at the cohort at the NIH, that for many patients who have both GI organ involvement and some other space, when they first went to see a provider, their first complaint was a GI condition.

[22:54] If the doctor had only diagnosed a GI condition, nothing else, that would have been wrong. Those patients may not have been monitored as well. A third of the patients originally presented like that.

[23:11] What that meant was that we should be paying attention to patients who have GI disease who have lots of eosinophils in their blood. Moving forward, if there are new complaints, we need to investigate. We can't forget they have that.

[23:27] Dr. Kuang asks, Wouldn't it be great if we had a better tool than needing to wait? Wouldn't it be great if we had a biomarker that said the eosinophils have switched their target location and are going somewhere else?

[23:41] One way to do that is to take different groups of eosinophils and look for differences between those that never target the GI tract and those that do. In patients who have EoE, the eosinophils only target or cause problems in the esophagus.

[23:58] Are their eosinophils any different than those of a healthy person, with none of these conditions? That was the goal of that study.

[24:10] T cells are another type of white blood cell. They contain a memory of foreign things they have encountered, which allows them to glom onto flu, COVID, peanuts, pollen, that kind of thing. They remember.

[24:32] Dr. Kuang says they learned that T cells, at least in the mouse model, are required in the development of eosinophilic esophagitis. The mice in the old study, where mice were forced to develop EoE, did not get EoE if you removed their T cells.

[24:50] In the first APFED HOPE grant study, Dr. Kuang found T cells in the blood and tissue of both EGIDs and food allergy patients, but the insides of the T cells were different. The food allergy patients were children recruited by a pediatric allergist.

[25:19] In the second APFED HOPE grant study, at Northwestern, Dr. Kuang recruited her adult food allergy patients. That was a way to validate what they found in the first study and move further to better characterize those T cells in the two different diseases.

[25:47] Dr. Kuang says we're at a point where we've recruited a lot of people. She says it's amazing what people are willing to do. It's very humbling.

[26:06] Dr. Kuang's team in the lab is really great, too. To accommodate patients, they would see them after work, if that's what they had to do to isolate eosinophils. So they did that, and now they are in the process of analyzing that data. It's really exciting.

[26:28] What's exciting is that they are seeing results that show that eosinophilic GI disease patients have circulating eosinophils that are different from the eosinophils of people who don't have GI involvement, and from people who have EoE.

[26:46] The EoE patients have eosinophils different from those of healthy donors. Dr. Kuang says there's a lot of promise for perhaps unique signatures that could help define these conditions; maybe someday without biopsying, but that's a long time away.

[27:16] Dr. Kuang says they will focus on some candidate targets and try to recreate some of that in a dish with eosinophils from healthy people.

[27:26] What are the signals that lead eosinophils to do this, and can we translate that back to available drugs that target certain cytokines or other pathways, and maybe give some insight to develop drugs that target other pathways for these diseases?

[28:17] Ryan thinks it's exciting that this research is narrowing in on not only the different symptoms, but also how the eosinophils are acting differently in these populations.

[28:44] Dr. Kuang is super excited about this research. You could imagine that all eosinophils are the same, but you don't know until you look. When they looked, using the newest technology, they found there were differences.

[29:33] Dr. Kuang says it is thought that T cells respond to triggers. We don't think eosinophils have a memory for antigens. T cells do. That's one of their definitions. When T cells react to a trigger, they give out messages through cytokines or by delivery.

[30:20] Those are the messages that recruit eosinophils and other cells to come and stir up some trouble.

[30:28] In the mouse model, where you don't have the T cells, and you don't get eosinophilic esophagitis in the particular way they made it happen in a mouse, that middle messenger is gone, so the eosinophils don't know where to go.

[30:44] With drugs that take out eosinophils, you think that you've gotten rid of the cell that creates all the problems. It shouldn't matter what the message says because there's no cell there to cause the damage.

[30:58] What Dr. Kuang learned is that, at least in certain eosinophilic GI diseases, that's not true. You erase the eosinophils from the picture, but that message is still coming.

[31:10] Who's carrying out the orders? Or is that message maintaining the wall of epithelial cells in a certain way that we didn't appreciate because the eosinophils were also there?

[31:24] It's important to study both, because one is the messenger and the other is one of the actors. Whether all of the actions taken by eosinophils are bad, or maybe some of them were meant to be good, we have yet to learn.

[31:40] At the moment, we're using it as a marker for disease activity, and that may change in the future, as we learn more about the roles of these cells in the process.

[31:50] We have drugs now that target eosinophils and drugs that target T cells. Dr. Kuang thinks it's important to study both and to study the impact of these drugs on these cells.

[32:02] You could theoretically use these drugs to understand whether, if someone responds to it, what happens to these cells, and if someone doesn't respond to it, what happens to these cells, and how this disease manifests in this flavor of patients.

[32:54] Dr. Kuang says, Often in science, we take a model. We think this works this way. Then, if this works this way, we expect that if we remove this, these things should happen. We did that with the first clinical trial, with NIH patients.

[33:10] It didn't quite happen the way we thought, so we had to go looking for explanations. These were unusual setbacks. Sometimes you have unusual findings, like the food allergy part.

[33:24] When Dr. Kuang went to Northwestern, she saw different cohorts of patients than she saw at NIH. She saw people who were seen every day, which is a different spectrum than those who are selected to be enrolled in a study protocol at the NIH.

[33:42] That broadened her viewpoint. It's maybe not all food-triggered. They were seeing adults who'd never had food allergies or asthma their whole life, and they had eosinophilic esophagitis suddenly as a 50-year-old. There's a significant group of them.

[34:10] What Dr. Kuang learned and tries to be open-minded about is that where you train, what sorts of patients you see, really shape your viewpoint and thinking about the disease process and the management process.

[34:24] Dr. Kuang says she was so lucky to have experienced that at a quaternary care referral center like the NIH and at an academic center like Northwestern, where there are fantastic gastroenterologists who see so many of these patients.

[34:56] Dr. Kuang and an Allergy Fellow knew they were going to get a wonderful data set from the NIH patients they had recruited, so they thought they had better look deeply at what had been learned before with older technology, with mice and people.

[35:13] They decided to gather previous research, and that ultimately got published as an article. From that research, they learned that people did things in many different ways because there was no standard. They didn't know what the standard should be.

[35:28] Different things you do to try to get eosinophils out of tissue impact how they look, in terms of transcript, gene expression, and what messages they make to define themselves as an eosinophil.

[35:43] They also learned that because eosinophils are hard to work with, they die easily, and you can't freeze them and work on them the next day; you can introduce issues in there that have to be accounted for.

[35:59] They learned that as an eosinophil research community, they ought to come up with some standards so that they can compare future studies with each other. Dr. Kuang says it was impossible to compare the old studies that used different premises.

[36:50] Dr. Kuang says we need to be proactive in creating the datasets in a standard way so that we can compare and have a more fruitful and diverse community of data. It's hard to use the old data.

[37:57] Dr. Kuang says they get fresh blood from patients, and because eosinophils are finicky, they need to be analyzed within four hours, or preserved in a way to save whatever fragile molecules are to be studied.

[38:19] If you let it sit, it starts dying, so you won't have as many of them, and they start changing because they're not in the body. Dr. Kuang experimented with putting a tube of blood on the bench and checking it with the same test every two hours. It changes.

[38:38] Four hours is a standard to prevent the eosinophils from dying. Patients need treatment. If a patient is hospitalized and needs treatment, Dr. Kuang's team needs to be there to get a sample before treatment is started.

[39:03] The treatment impacts it, changing the situation. Much of the treatment, initially, is steroids. When you give lots of steroids, the eosinophils go away. It's no good to draw their blood then.

[39:27] Dr. Kuang also gets a urine sample. The granules of the eosinophils can get into the urine. As they study people with active disease, they want to capture granule proteins in the urine as a less invasive way to monitor activity in different disease states.

[40:04] The patient just needs to give Dr. Kuang either arm and a urine sample.

[41:04] Dr. Kuang explains, you can count your eosinophils after four hours, but to study them, they have different flags of different colors and shapes. Those colors and shapes may mean that it's an activated eosinophil, or they may have other meanings.

[41:41] Dr. Kuang focused on markers that look at whether it's going to spill its granules and some traditional markers of activation.

[41:50] Everyone chooses a different marker of activation. So they decided to look at as many as they could. One marker is not sufficient. They seem to be different in different conditions. The markers are on the surface; you need to analyze them right away.

[42:20] Then, Dr. Kuang breaks open the eosinophils and grabs the messenger RNA. They preserve it to do sequencing to read out the orders to see what this eosinophil is telling itself to make. RNA chops up messages.

[43:00] When you open an eosinophil, a protein you find is RNA, which chops up messages, destroying parts of the cell. You want to save the message. There's a brief time to analyze the eosinophil. Dr. Kuang works to preserve and read the message.

[44:04] Dr. Kuang hopes someday to run a tube of blood, look at the flags on the eosinophils, and say, "I think your eosinophilic GI disease is active," or "You have a kind of eosinophilic GI disease we need to monitor more frequently for organ damage."

[44:38] If another patient doesn't have those flags, Dr. Kuang could say, "I think the chances that you're going to have involvement elsewhere are low." That can give reassurance to folks who are worried.

[45:15] Dr. Kuang hopes that someday we can understand better why some people have food allergies vs. eosinophilic GI disease. They both have T cells, but the T cells have different packages inside with messages to deliver.

[45:34] Every day, Dr. Kuang has to tell patients she doesn't have that answer. Someday, she hopes she can tell a patient she does have that answer.

[46:35] Dr. Kuang tells about an NIH grant she's excited about and the patients she recruits after therapy, or elimination diets, to examine eosinophils and T cells, to see the impacts their treatments or diets have had on eosinophilic GI disease.

[47:18] Dr. Kuang believes there will be predictors of who will respond to an elimination diet and who will respond to steroid therapy. She hopes one day to have that, rather than going through rounds of six to eight weeks followed by a scope.

[47:34] If you have an elimination diet for six to eight weeks, every time you add back a food, you have to do a scope. Dr. Kuang says it would be great if you could be more precise ahead of time for therapy.

[47:48] Dr. Kuang says these wonderful drugs selectively take out parts of the pathway in the immune system. They provide real-life opportunities to ask, why is this important in human biology and the human immune system?

[48:15] Dr. Kuang finds the knowledge itself fascinating and useful. She hopes it informs how we choose future drugs or therapeutic avenues to get the best we can out of what we've learned, so we have more targeted ways of treating specific diseases.

[48:48] Ryan is grateful for all the research happening for the eosinophilic disease community and all the patients participating in the research. He asks Dr. Kuang how a patient can participate in research.

[49:12] There are lots of ways to be involved in research. Dr. Kuang says her patients come away from participating in research feeling good about having done it.

[49:22] Answer a survey, if that's what you have bandwidth for. Where therapies are changing, being a part of a community is good for the community, for the future, but it's good for you, too. It's healing in ways that are not steroids or biologics.

[49:58] Being part of a community is healing in ways we all need when we feel alone and bewildered. You're not alone.

[50:12] There are many ways to participate: APFED, CEGIR, individual institutions, and clinical trials. They all have different amounts of involvement. It's worthwhile to participate, not only for future patients but for yourself. They're fantastic!

[50:56] Dr. Kuang talks about the privilege as a physician of working with APFED and other organizations to do this work.

[51:09] Holly thanks Dr. Kuang for sharing all of this research and exciting information.

[51:25] Dr. Kuang is excited about what her group is doing and is hopeful. Besides showing up for this disease, we have to show up for research, in general, in this country. It's a dark time for NIH research funding.

[51:55] Dr. Kuang asks the young listeners who are thinking of choosing a field to see the potential and get into it, study this, and believe that there's going to be a future with a more nurturing research environment.

[52:36] Dr. Kuang would hate to lose generations of scientists. She says that once she was a little girl who was trying to be a scientist. Her parents had no connections with scientists or doctors, but she was able to get into research, and she thinks you can, too.

[53:48] As a graduate student, Ryan has always been interested in trying to improve things, and he sees hope on the horizon. He's very grateful to the APFED community for supporting these research HOPE Pilot Grants.

[54:17] Ryan is very grateful to Dr. Kuang for joining us today.

[54:22] For our listeners who want to learn more about eosinophilic disorders, we encourage you to visit apfed.org and check out the links in the show notes.

[54:28] If you're looking to find a specialist who treats eosinophilic disorders, we encourage you to use APFED's Specialist Finder at http://apfed.org/specialist.

[54:37] If you'd like to connect with others impacted by eosinophilic diseases, please join APFED's online community on the Inspire Network at https://apfed.org/connections.

[54:57] Dr. Kuang thanks Ryan and Holly and says she enjoyed the conversation. Holly also thanks APFED's Education Partners GSK, Sanofi, Regeneron, and Takeda for supporting this episode.

Mentioned in This Episode:

Fei Li Kuang, MD, PhD, Allergist and Immunologist, Northwestern Medicine

Grants and publications discussed: https://apfed.org/blog/apfed-announces-2018-hope-apfed-hope-pilot-grant-recipient/

https://apfed.org/blog/fei-li-kuang-hope-pilot-grant-award/

https://pubmed.ncbi.nlm.nih.gov/39213186/

https://pubmed.ncbi.nlm.nih.gov/37487654/

APFED on YouTube, Twitter, Facebook, Pinterest, Instagram

Real Talk: Eosinophilic Diseases Podcast

https://apfed.org/specialist

https://apfed.org/connections

http://apfed.org/research/clinical-trials

Education Partners: This episode of APFED's podcast is brought to you thanks to the support of GSK, Sanofi, Regeneron, and Takeda.

Tweetables:

"I think the patients that you meet in a clinical trial, especially in a special place like NIH, occupy a space in your heart — I don't mean to be all too emotional about this — that makes you want to keep working on the subject area." — Fei Li Kuang, MD, PhD

"When I was a Fellow at the NIH, we were doing a Phase 2 clinical trial, looking at, for want of a better word, "blowing up" eosinophils in patients who have a lot of them, hypereosinophilic syndrome patients." — Fei Li Kuang, MD, PhD

"We're at a point where we've recruited a lot of people. I've had patients drive from the northern part of Illinois … come down and give me blood. It's amazing what people want to do and are willing to do. It's very humbling, actually." — Fei Li Kuang, MD, PhD

"You erase the eosinophils from the picture, but that message is still coming. Who's carrying out the orders? Or is that message maintaining the wall of epithelial cells in a certain way that we didn't appreciate because the eosinophils were also there?" — Fei Li Kuang, MD, PhD

"We need to be proactive in creating the datasets in a standard way so that we can compare and have a more fruitful and diverse community of data." — Fei Li Kuang, MD, PhD

"I think it's worthwhile to participate [in a clinical trial], not only for the future people but for yourself." — Fei Li Kuang, MD, PhD

Guest Bio:

Fei Li Kuang, MD, PhD, is currently an Assistant Professor in the Division of Allergy and Immunology at Northwestern University Feinberg School of Medicine in Chicago, IL. She is a graduate of the Albert Einstein College of Medicine Medical Scientist Training Program with both a PhD in Cell Biology/Immunology and an MD. She completed her Internal Medicine Residency at Columbia University, New York Presbyterian Hospital in New York City, she did her Fellowship in Allergy and Immunology at the National Institute of Allergy and Infectious Disease (NIAID) in Bethesda, Maryland. She is a physician-scientist who takes care of patients with eosinophilic disorders and also performs laboratory research on these disorders in her lab, often using patient samples.

Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED's Health Sciences Advisory Council, interview Evan S. Dellon, MD, and Elizabeth T. Jensen, PhD, about a paper they published on predictors of patients receiving no medication for treatment of eosinophilic esophagitis.

Disclaimer: The information provided in this podcast is designed to support, not replace, the relationship between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.

Key Takeaways:

[:52] Co-host Ryan Piansky introduces the episode, brought to you thanks to the support of Education Partners GSK, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz.

[1:14] Holly introduces today's topic, predictors of not using medication for EoE, and today's guests, Dr. Evan Dellon and Dr. Elizabeth Jensen.

[1:29] Dr. Dellon is an Adjunct Professor of Epidemiology at the University of North Carolina School of Medicine in Chapel Hill. He is also the Director of the UNC Center for Esophageal Diseases and Swallowing.

[1:42] Dr. Dellon's main research interest is in the epidemiology, pathogenesis, diagnosis, treatment, and outcomes of eosinophilic esophagitis (EoE) and eosinophilic GI diseases (EGIDs).

[1:55] Dr. Jensen is a Professor of Epidemiology with a specific expertise in reproductive, perinatal, and pediatric epidemiology. She has appointments at both Wake Forest University School of Medicine and the University of North Carolina at Chapel Hill.

[2:07] Her research primarily focuses on etiologic factors in the development of pediatric immune-mediated chronic diseases, including understanding factors contributing to disparities in health outcomes.

[2:19] Both Dr. Dellon and Dr. Jensen also serve on the Steering Committee for EGID Partners Registry.

[2:24] Ryan thanks Dr. Dellon and Dr. Jensen for joining the podcast today.

[2:29] Dr. Dellon was the first guest on this podcast. It is wonderful to have him back for the 50th episode! Dr. Dellon is one of Ryan's GI specialists. Ryan recently went to North Carolina to get a scope with him.

[3:03] Dr. Dellon is an adult gastroenterologist at the University of North Carolina at Chapel Hill. He directs the Center for Esophageal Diseases and Swallowing. Clinically and research-wise, he is focused on EoE and other eosinophilic GI diseases.

[3:19] His research interests span the entire field, from epidemiology, diagnosis, biomarkers, risk factors, outcomes, and a lot of work, more recently, on treatments.

[3:33] Dr. Jensen has been on the podcast before, on Episode 27. Holly invites Dr. Jensen to tell the listeners more about herself and her work with eosinophilic diseases.

[3:46] Dr. Jensen has been working on eosinophilic gastrointestinal diseases for about 15 years. She started some of the early work around understanding possible risk factors for the development of disease.

[4:04] She has gone on to support lots of other research projects, including some with Dr. Dellon, where they're looking at gene-environment interactions in relation to developing EoE.

[4:15] She is also looking at reproductive factors as they relate to EoE, disparities in diagnosis, and more. It's been an exciting research trajectory, starting with what we knew very little about and building to an increasing understanding of why EoE develops.

[5:00] Dr. Dellon explains that EoE stands for eosinophilic esophagitis, a chronic allergic condition of the esophagus.

[5:08] You can think of EoE as asthma of the esophagus or eczema of the esophagus, although in general, people don't grow out of EoE, like they might grow out of eczema or asthma. When people have EoE, it is a long-term condition.

[5:24] Eosinophils are a type of white blood cell, specializing in allergy responses. Normally, they are not in the esophagus. When we see them there, we worry about an allergic process. When that happens, that's EoE.

[5:40] Over time, the inflammation seen in EoE and other allergic cell activity causes swelling and irritation in the esophagus. Early on, this often leads to a range of upper GI symptoms — including poor growth or failure to thrive in young children, abdominal pain, nausea, and symptoms that can mimic reflux.

[5:58] In older kids, symptoms are more about trouble swallowing. That's because the swelling that happens initially, over time, may turn into scar tissue. So the esophagus can narrow and cause swallowing symptoms like food impaction.

[6:16] Ryan speaks of living with EoE for decades and trying the full range of treatment options: food elimination, PPIs, steroids, and, more recently, biologics.

[6:36] Dr. Dellon says Ryan's history is a good overview of how EoE is treated. There are two general approaches to treating the underlying condition: using medicines and/or eliminating foods that we think may trigger EoE from the diet.

[6:57] For a lot of people, EoE is a food-triggered allergic condition.

[7:01] The other thing that has to happen in parallel is surveying for scar tissue in the esophagus. If that's present and people have trouble swallowing, sometimes stretching the esophagus is needed through esophageal dilation.

[7:14] There are three categories of medicines used for treatment. Proton pump inhibitors are reflux meds, but they also have an anti-allergy effect in the esophagus.

[7:29] Topical steroids are used to coat the esophagus and produce an anti-inflammatory effect. The FDA has approved a budesonide oral suspension for that.

[7:39] Biologics, which are generally systemic medications, often injectable, can target different allergic factors. Dupilumab is approved now, and there are other biologics that are being researched as potential treatments.

[7:51] Even though EoE is considered an allergic condition, we don't have a test to tell people what they are allergic to. If it's a food allergy, we do an empiric elimination diet because allergy tests aren't accurate enough to tell us what the EoE triggers are.

[8:10] People will eliminate foods that we know are the most common triggers, like milk protein, dairy, wheat, egg, soy, and other top allergens. You can create a diet like that and then have a response to the diet elimination.

[8:31] Dr. Jensen and Dr. Dellon recently published an abstract in the American Journal of Gastroenterology about people with EoE who are not taking any medicine for it. Dr. Jensen calls it a real-world data study, leveraging electronic health record patient data.

[8:51] It gives you an impression of what is actually happening, in terms of treatments for patients, as opposed to a randomized control trial, which is a fairly selected patient population. This is everybody who has been diagnosed, and then what happens with them.

[9:10] Because of that, it gives you a wide spectrum of patients. Some patients are going to be relatively asymptomatic. It may be that we arrived at their diagnosis while working them up for other potential diagnoses.

[9:28] Other patients are going to have rather significant impacts from the disease. We wanted to get an idea of what is actually happening out there with the full breadth of the patient population that is getting diagnosed with EoE.

[9:45] Dr. Jensen was not surprised to learn that there are patients who had no pharmacologic treatment.

[9:58] Some patients are relatively asymptomatic, and others are not interested in pursuing medications initially or are early in their disease process and still exploring dietary treatment options.

[10:28] Holly sees patients from infancy to geriatrics, and if they're not having symptoms, they wonder why bother treating it.

[10:42] Dr. Jensen says it's a point of debate on the implications of somebody who has the disease and goes untreated. What does that look like long-term? Are they going to develop more of that fibrostenotic pattern in their esophagus without treatment?

[11:07] This is a question we're still trying to answer. There is some suggestion that for some patients who don't manage their disease, we very well may be looking at a food impaction in the future.

[11:19] Dr. Dellon says we know overall for the population of EoE patients, but it's hard to know for a specific patient. We have a bunch of studies now that look at how long people have symptoms before they're diagnosed. There's a wide range.

[11:39] Some people get symptoms and get diagnosed right away. Others might have symptoms for 20 or 30 years that they ignore, or don't have access to healthcare, or the diagnosis is missed.

[11:51] What we see consistently is that people who may be diagnosed within a year or two may only have a 10 or 20% chance of having that stricture and scar tissue in the esophagus, whereas people who go 20 years, it might be 80% or more.

[12:06] It's not everybody who has EoE who might end up with that scar tissue, but certainly, it's suggested that it's a large majority.

[12:16] That's before diagnosis. We have data that shows that after diagnosis, if people go a long time without treatment or without being seen in care, they also have an increasing rate of developing strictures.

[12:29] In general, the idea is yes, you should treat EoE, because on average, people are going to develop scar tissue and more symptoms. For the patient in front of you with EoE but no symptoms, what are the chances it's going to get worse? You don't know.

[13:04] There are two caveats with that. The first is what we mean by symptoms. Kids may have vomiting and growth problems. Adults can eat carefully, avoiding foods that hang up in the esophagus, like breads and overcooked meats, sticky rice, and other foods.

[13:24] Adults can eat slowly, drink a lot of liquid, and not perceive they have symptoms. When someone tells Dr. Dellon they don't have symptoms, he will quiz them about that. He'll even ask about swallowing pills.

[13:40] Often, you can pick up symptoms that maybe the person didn't even realize they were having. In that case, that can give you some impetus to treat.

[13:48] If there really are no symptoms, Dr. Dellon thinks we're at a point where we don't really know what to do.

[13:54] Dr. Dellon just saw a patient who had a lot of eosinophils in their small bowel with absolutely no GI symptoms. He said, "I can't diagnose you with eosinophilic enteritis, but you may develop symptoms." People like that, he will monitor in the clinic.

[14:14] Dr. Dellon will discuss it with them each time they come back for a clinic visit.

[14:19] Holly is a speech pathologist, but also sees people for feeding and swallowing. The local gastroenterologist refers patients who choose not to treat their EoE to her. Holly teaches them things they should be looking out for.

[14:39] If your pills get stuck or if you're downing 18 ounces during a mealtime, maybe it's time to treat it. People don't see these coping mechanisms they use that are impacting their quality of life. They've normalized it.

[15:30] Dr. Dellon says, of these people who aren't treated, there's probably a subset who appropriately are being observed and don't have a medicine treatment or are on a diet elimination.

[15:43] There's also probably a subset who are inappropriately not on treatment. It especially can happen with students who were under good control with their pediatric provider, but moved away to college and didn't transfer to adult care.

[16:08] They ultimately come back with a lot of symptoms that have progressed over six to eight years.

[16:18] Ryan meets newly diagnosed adult patients at APFED's conferences, who say they have no symptoms, but chicken gets caught in their throat. They got diagnosed when they went to the ER with a food impaction.

[16:38] Ryan says you have to wonder at what point that starts to get reflected in patient charts. Are those cases documented where someone is untreated and now has EoE?

[16:49] Ryan asks in the study, "What is the target EGID Cohort and why was it selected to study EoE? What sort of patients were captured as part of that data set?"

[16:58] Dr. Jensen said they identified patients with the ICD-10 code for a diagnosis of EoE. Then they looked to see if there was evidence of symptoms or complications in relation to EoE. This was hard; some of these are relatively non-specific symptoms.

[17:23] These patients may have been seeking care and may have been experiencing some symptoms that may or may not have made it into the chart. That's one of the challenges with real-world data analyses.

[17:38] Dr. Jensen says they are using data that was collected for documenting clinical care and for billing for clinical care, not for research, so it comes with some caveats when doing research with this data.

[18:08] Research using electronic health records gives a real-world perspective on patients who are seeking care or have a diagnosis of EoE, as opposed to a study trying to enroll a patient population that potentially isn't representative of the breadth of individuals living with EoE.

[18:39] Dr. Dellon says another advantage of real-world data is the number of patients. The largest randomized controlled trials in EoE might have 400 patients, and they are incredibly expensive to do.

[18:52] A study of electronic health records (EHR) is reporting on the analysis of just under 1,000. The cohort, combined from three different centers, has more than 1,400 people, a more representative, larger population.

[19:16] Dr. Dellon says when you read the results, understand the limitations and strengths of a study of health records, to help contextualize the information.

[19:41] Dr. Dellon says it's always easier to recognize the typical presentations. Materials about EoE and studies he has done that led to medicine approvals have focused on trouble swallowing. That can be relatively easily measured.

[20:01] Patients often come to receive care with a food impaction, which can be impactful on life, and somewhat public, if in a restaurant or at work. Typical symptoms are also the ones that get you diagnosed and may be easier to treat.

[20:26] Dr. Dellon wonders if maybe people don't treat some of the atypical symptoms because it's not appreciated that they can be related to EoE.

[20:42] Holly was diagnosed as an adult. Ryan was diagnosed as a toddler. Holly asks what are some of the challenges people face in getting an EoE diagnosis.

[20:56] Dr. Jensen says symptoms can sometimes be fairly non-specific. There's some ongoing work by the CEGIR Consortium trying to understand what happens when patients come into the emergency department with a food bolus impaction.

[21:28] Dr. Jensen explains that we see there's quite a bit of variation in how that gets managed, and if they get a biopsy. You have to have a biopsy of the esophagus to get a diagnosis of EoE.

[21:45] If you think about the steps that need to happen to get a diagnosis of EoE, that can present barriers for some groups to ultimately get that diagnosis.

[21:56] There's also been some literature around a potential assumption about which patients are more likely to be at risk. Some of that is still ongoing. We know that EoE occurs more commonly in males in roughly a two-to-one ratio. Not exclusively in males, obviously, but a little more often in males.

[22:20] We don't know anything about other groups of patients that may be at higher risk. That's ongoing work that we're still trying to understand. That in itself can also be a barrier when there are assumptions about who is or isn't likely to have EoE.

[23:02] Dr. Dellon says that in adolescents and adults, the typical symptoms are trouble swallowing and food sticking, which have many causes besides EoE, some of which are more common.

[23:18] In that population, heartburn is common. Patients may report terrible reflux that, on questioning, sounds more like trouble swallowing than GERD. Sometimes, with EoE, you may have reflux that doesn't improve. Is it EoE, reflux, or both?

[24:05] Some people will have chest discomfort. There are some reports of worsening symptoms with exercise, which brings up cardiac questions that have to be ruled out first.

[24:19] Dr. Dellon mentions some more atypical symptoms. An adult having pain in the upper abdomen could have EoE. In children, the symptoms could be anything in the GI tract. Some women might have atypical symptoms with less trouble swallowing.

[24:58] Some racial minorities may have those kinds of symptoms, as well. If you're not thinking of the condition, it's hard to make the diagnosis.

[25:08] Dr. Jensen notes that there are different cultural norms around expressing symptoms and dietary patterns, which may make it difficult to parse out a diagnosis.

[25:27] Ryan cites a past episode where access to a GI specialist played a role in diagnosing patients with EoE. Do white males have more EoE, or are their concerns just listened to more seriously?

[25:57] Ryan's parents were told when he was two that he was throwing up for attention. He believes that these days, he'd have a much easier time convincing a doctor to listen to him. From speaking to physicians, Ryan believes access is a wide issue in the field.

[26:23] Dr. Dellon tells of working with researchers at Mayo in Arizona and the Children's Hospital of Phoenix. They have a large population of Hispanic children with EoE, much larger than has been reported elsewhere. They're working on characterizing that.

[26:49] Dr. Dellon describes an experience with a visiting trainee from Mexico City, where there was not a lot of EoE reported. The trainee went back and looked at the biopsies there, and it turned out they were not performing biopsies on patients with dysphagia in Mexico City.

[27:13] When he looked at the patients who ended up getting biopsies, they found EoE in 10% of patients. That's similar to what's reported out of centers in the developed world. As people are thinking about it more, we will see more detection of it.

[27:30] Dr. Dellon believes those kinds of papers will be out in the next couple of months, to a year.

[27:36] Holly has had licensure in Arizona for about 11 years. She has had nine referrals recently of children with EoE from Arizona. Normally, it's been one or two that she met at a conference.

[28:00] Ryan asks about the research on patients not having their EoE treated pharmacologically. Some treat it with food avoidance and dietary therapy. Ryan notes that he can't have applesauce, as it is a trigger for his EoE.

[28:54] Dr. Jensen says that's one of the challenges in using the EHR data. That kind of information is only available to the researchers through free text. That's a limitation of the study, assessing the use of dietary elimination approaches.

[29:11] Holly says some of her patients have things listed as allergies that are food sensitivities. Ryan says it's helpful for the patients to have their food sensitivities listed along with their food allergies, but it makes records more difficult to parse for research.

[30:14] Dr. Dellon says they identify EoE by billing code, but the codes are not always used accurately. Natural Language Processing can train a computer system to find important phrases. Their collaborators working on the real-world data are using it.

[30:59] Dr. Dellon hopes that this will be a future direction for this research to find anything in the text related to diet elimination.

[31:32] Dr. Jensen says that older patients were less likely to seek medication therapy. She says it's probably for a couple of reasons. First, older patients may have been living with the disease for a long time and have had compensatory mechanisms in place.

[32:03] The other reason may be senescence or burnout of the disease, long-term. Patients may be less symptomatic as they get older. That's a question that remains to be answered for EoE. It has been seen in some other disease processes.

[32:32] Dr. Dellon says there's not much data specifically looking at EoE in the older population. Dr. Dellon did work years ago with another doctor, and they found that older patients had a better response to some treatments, particularly topical steroids.

[32:54] It wasn't clear whether it was a milder aspect of the disease, easier to treat, or because they were older and more responsible, taking their medicines as prescribed, and having a better response rate. It's the flip side of work in the pediatric population.

[33:16] There is an increasingly aging population with EoE. Young EoE patients will someday be over 65. Dr. Dellon hopes there will be a cure by that point, but it's an expanding population now.

[33:38] Dr. Jensen says only a few sites are contributing data, so they hope to add additional sites to the study. For some of the less common outcomes, they need a pretty large patient sample to ask some of those kinds of questions.

[33:55] They will continue to follow up on some of the work that this abstract touched on and try to understand some of these issues more deeply.

[34:06] Dr. Dellon mentions other work within the cohort. Using Natural Language Processing, they are looking at characterizing endoscopy information and reporting it without a manual review of reports and codes. You can't get that from billing data.

[34:29] Similarly, they are trying to classify patient severity by the Index of Severity with EoE, and layer that on looking at treatments and outcomes based on disease severity. Those are a couple of other directions where this cohort is going.

[34:43] Holly mentions that this is one of many research projects Dr. Jensen and Dr. Dellon have collaborated on together. They also collaborate through EGID Partners. Holly asks them to share a little bit about that.

[34:53] Dr. Jensen says EGID Partners is an online registry where individuals, caregivers, and parents of children affected with EGIDs can join.

[35:07] EGID Partners also needs people who don't live with an EGID to join, as controls. That gives the ability to compare those who are experiencing an EGID relative to those who aren't.

[35:22] When you join EGID Partners, they provide you with a set of questionnaires to complete. Periodically, they push out a few more questionnaires.

[35:33] EGID Partners has provided some really great information about patient experience and answered questions that patients want to know about, like joint pain and symptoms outside the GI tract.

[36:04] To date, there are close to 900 participants in the registry from all over the world. As it continues to grow, it will give the ability to look at the patient experience in different geographical areas.

[36:26] Dr. Dellon says we try to have it be interactive, because it is a collaboration with patients. The Steering Committee works with APFED and other patient advocacy groups from around the world.

[36:41] The EGID Partners website shows general patient locations anonymously. It shows the breakdown of adults with the condition and caregivers of children with the condition, the symptom distribution, and the treatment distribution.

[37:03] As papers get published and abstracts are presented, EGID Partners puts them on the website. Once someone joins, they can suggest a research idea. Many of the studies they have done have come from patient suggestions.

[37:20] If there's an interesting idea for a survey, EGID Partners can push out a survey to everybody in the group and answer questions relatively quickly.

[37:57] Dr. Dellon says a paper came out recently about telehealth. EoE care, in particular, is a good model for telehealth because it can expand access for patients who don't have providers in their area.

[38:22] EoE is a condition where care involves a lot of discussion but not a lot of need for physical exams and direct contact, so telehealth can make things very efficient.

[38:52] EGID Partners surveyed patients about telehealth. They thought it was efficient and saved time, and they had the same kind of interactions as in person. In general, in-state insurance covered it. Patients were happy to do those kinds of visits again.

[39:27] Holly says Dr. Furuta, herself, and others were published in the Gastroenterology journal in 2019 about starting to do telehealth because patients coming to the Children's Hospital of Colorado from out of state had no local access to feeding therapy.

[39:50] Holly went to the board, and they allowed her to get licensure in different states. She started with some of the most impacted patients in Texas and Florida in 2011 and 2012. They collected data. They published in 2019 about telehealth's positive impact.

[40:13] When 2020 rolled around, Holly had trained a bunch of people on how to do feeding therapy via telehealth. You have to do all kinds of things, like make yourself disappear, to keep the kids engaged and in their chairs!

[40:25] Now it is Holly's primary practice. She has licenses in nine states. She sees people all over the country. With her diagnosis, her physicians at Mass General have telehealth licensure in Maine. She gets to do telehealth with them instead of driving two hours.

[40:53] Dr. Jensen tells of two of the things they hope to do at EGID Partners. One is trying to understand more about reproductive health for patients with an EGID diagnosis. Only a few studies have looked at this question, and with very small samples.

[41:15] As more people register for EGID Partners, Dr. Jensen is hoping to be able to ask some questions related to reproductive health outcomes.

[41:27] The second goal is a survey suggested by the Student Advisory Committee, asking questions related to the burden of disease specific to the teen population.

[41:48] This diagnosis can hit that population particularly hard, at a time when they are trying to build and sustain friendships and are transitioning to adult care and moving away from home. This patient population has a unique perspective we wanted to hear.

[42:11] Dr. Jensen and Dr. Dellon work on all kinds of other projects, too.

[42:22] Dr. Dellon says they have done a lot of work on the early-life factors that may predispose to EoE. They are working on a large epidemiologic study to get some insight into early-life factors, including factors that can be measured in baby teeth.

[42:42] That's outside of EGID Partners. It's been ongoing, and they're getting close, maybe over the next couple of years, to having some results.

[43:03] Ryan says all of those projects sound so interesting. We need to have you guys back to dive into those results when you have something finalized.

[43:15] For our listeners who want to learn more about eosinophilic disorders, we encourage you to visit apfed.org and check out the links in the show notes below.

[43:22] If you're looking to find specialists who treat eosinophilic disorders, we encourage you to use APFED's Specialist Finder at http://apfed.org/specialist.

[43:31] If you'd like to connect with others impacted by eosinophilic diseases, please join APFED's online community on the Inspire Network at https://apfed.org/connections.

[43:41] Ryan thanks Dr. Dellon and Dr. Jensen for joining us today. This was a fantastic conversation. Holly also thanks APFED's Education Partners GSK, Sanofi, Regeneron, and Takeda for supporting this episode.

Mentioned in This Episode:

Evan S. Dellon, MD, MPH, Academic Gastroenterologist, University of North Carolina School of Medicine

Elizabeth T. Jensen, MPH, PhD, Epidemiologist,

Wake Forest University School of Medicine,

University of North Carolina at Chapel Hill

Predictors of Patients Receiving No Medication for Treatment of Eosinophilic Esophagitis in the United States: Data from the TARGET-EGIDS Cohort

Episode 15: Access to Specialty Care for Eosinophilic Esophagitis (EoE)

APFED on YouTube, Twitter, Facebook, Pinterest, Instagram

Real Talk: Eosinophilic Diseases Podcast

https://apfed.org/specialist

https://apfed.org/connections

http://apfed.org/research/clinical-trials

Education Partners: This episode of APFED's podcast is brought to you thanks to the support of GSK, Sanofi, Regeneron, and Takeda.

Tweetables:

"I've been working on eosinophilic gastrointestinal diseases for about 15 years. I started some of the early work around understanding possible risk factors for the development of disease. I've gone on to support lots of other research projects." — Elizabeth T. Jensen, MPH, PhD

"You can think of EoE as asthma of the esophagus or eczema of the esophagus, although in general, people don't grow out of EoE, like they might grow out of eczema or asthma. When people have it, it really is a long-term condition." — Evan S. Dellon, MD, MPH

"There are two general approaches to treating the underlying condition, … using medicines and/or eliminating foods from the diet that we think may trigger EoE. I should say, for a lot of people, EoE is a food-triggered allergic condition." — Evan S. Dellon, MD, MPH

"I didn't find it that surprising [that there are patients who had no treatment]. Some patients are relatively asymptomatic, and others are not interested in pursuing medications initially or are … still exploring dietary treatment options." — Elizabeth T. Jensen, MPH, PhD

"We have a bunch of studies now that look at how long people have symptoms before they're diagnosed. There's a wide range. Some people get symptoms and are diagnosed right away. Other people might have symptoms for 20 or 30 years." — Evan S. Dellon, MD, MPH

"EGID Partners is an online registry where individuals, caregivers, and parents of children affected with EGIDs can join. EGID Partners also needs people who don't live with an EGID to join, as controls." — Elizabeth T. Jensen, MPH, PhD

Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED's Health Sciences Advisory Council, interview Dr. Andrew Lee, Vice President, Clinical Research at Uniquity Bio, about Thymic Stromal Lymphopoietin (TSLP) and eosinophilic esophagitis (EOE).

Disclaimer: The information provided in this podcast is designed to support, not replace, the relationship between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.

Key Takeaways:

[:49] Co-host Ryan Piansky introduces the episode, brought to you thanks to the support of Education Partners Bristol Myers Squibb, GSK, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz.

[1:13] Holly introduces today's topic, Thymic Stromal Lymphopoietin (TSLP) and eosinophilic esophagitis (EOE), and today's guest, Dr. Andrew Lee, Vice President, Clinical Research at Uniquity Bio.

[1:36] Dr. Lee has nearly 20 years of experience in the clinical development of new vaccines, biologics, and drugs. Holly welcomes Dr. Lee.

[1:52] Dr. Lee trained in internal medicine and infectious diseases.

[1:58] Dr. Lee has been fascinated by the immune system and how it can protect people against infections, what happens when immunity is damaged, as in HIV and AIDS, and how to apply that knowledge to boost immunity with vaccines to prevent infections.

[2:16] Dr. Lee led the clinical development for a pediatric combination vaccine for infants and toddlers. It is approved in the U.S. and the EU.

[2:29] Dr. Lee led the Phase 3 Program for a monoclonal antibody to prevent RSV, a serious infection in infants. That antibody was approved in June 2025 for use in the U.S.

[2:44] In his current company, Dr. Lee leads research into approaches to counteract an overactive immune system. They're looking at anti-inflammatory approaches to diseases like asthma, EoE, and COPD.

[2:58] Dr. Lee directs the ongoing Phase 2 studies that they are running in those areas.

[3:28] Dr. Lee sees drug development as a chance to apply cutting-edge research to benefit people. He trained at Bellevue Hospital in New York City in the 1990s.

[3:40] When Dr. Lee started as an intern, there were dedicated ICU wards for AIDS patients because many of the sickest patients were dying of AIDS and its complications.

[3:52] Before the end of Dr. Lee's residency, they shut down those wards because the patients were on anti-retroviral medications and were doing so well that they were treated as outpatients. They didn't need dedicated ICUs for AIDS patients anymore.

[4:09] For Dr. Lee, that was a powerful example of how pharmaceutical research and drug regimen can impact patients' lives for the better by following the science. That's what drove Dr. Lee to go in the direction of research.

[4:48] Dr. Lee explains Thymic Stromal Lymphopoietin (TSLP). TSLP serves as an alarm signal for Type 2 or TH2 inflammation, a branch of the immune responses responsible for allergic responses and also immunity against parasites.

[5:17] When the cells that line the GI tract and the cells that line the airways in our lungs receive an insult or an injury, they get a danger signal, then they make TSLP.

[5:28] This signal activates other immune cells, like eosinophils and dendritic cells, which make other inflammatory signals or cytokines like IL-4, IL-13, and IL-5.

[5:47] That cascade leads to inflammation, which is designed to protect the body in response to the danger signal, but in some diseases, when there's continued exposure to allergens or irritants, that inflammation goes from being protective to being harmful.

[6:15] That continued inflammation, over the years, can lead to things like the thickened esophagus with EoE, or lungs that are less pliant and less able to expand, in respiratory diseases.

[6:48] Dr. Lee says he thinks of TSLP as being a master switch for this branch of immune responses. If you turn on TSLP, that turns on a lot of steps that lead to generating an allergic type of response.

[7:06] It's also the same type of immune response that can fight off parasite infections. It's the first step in a cascade of other steps generating that type of immune response.

[7:30] Dr. Lee says people have natural genetic variation in the genes that incur TSLP.

[7:38] Observational studies have found that some people with genetic variations that lead to higher levels of TSLP in their bodies had an increased risk for allergic inflammatory diseases like EoE, atopic dermatitis, and asthma.

[8:13] Studies like the one just mentioned point to TSLP being important for increased risk of developing atopic types of diseases like EoE and others. There's been some work done in the laboratory that shows that TSLP is important for activating eosinophils.

[8:38] There's accumulating evidence that TSLP activation leads to eosinophil activation, other immune cells, or white blood cells getting activated.

[9:07] Like a cascade, those cells turn on T-cells and B-cells, which are like vector cells. They lead to direct responses to fight off infections, in case that's the signal that leads to the turning on TSLP.

[9:48] Ryan refers to a paper published in the American Journal of Gastroenterology exploring the role of TSLP in an experimental mouse model of eosinophilic esophagitis. Ryan asks what the researchers were aiming to find.

[10:00] Dr. Lee says the researchers were looking at the genetic studies we talked about, the observational studies that are beginning to link more TSLP with more risk for EoE and those types of diseases.

[10:12] The other type of evidence that's accumulating is from in vitro (in glass) experiments or test tube experiments, where you take a couple of cells that you think are relevant to what's going on.

[10:28] For example, you could get some esophageal cells and a couple of immune cells, and put TSLP into the mix, and you see that TSLP leads to activation of those immune cells and that leads to some effects on the esophageal cells.

[10:42] Those are nice studies, but they're very simplified compared to what you can do in the body. These researchers were interested in extending those initial observations from other studies, but working in the more realistic situation of a mouse model.

[11:00] You have the whole body of the mouse being involved. You can explore what TSLP is doing and model a disease that closely mimics what's happening with EoE in humans.

[12:23] They recreated the situation of what seems to be happening in EoE in people. We haven't identified it specifically, but there's some sort of food allergen in patients with EoE that the immune system is set off by.

[12:55] What researchers are observing in this paper is that in these mice that were treated with oxazolone, there is inflammation in the esophagus, an increase in TSLP levels, and eosinophils going into the esophageal tissues.

[13:15] Dr. Lee says, that's one of the main ways we diagnose EoE; we take a biopsy of the esophagus and count how many eosinophils there are. Researchers saw similar findings. The eosinophil count in the esophageal tissues went way up in these mice.

[13:34] Researchers also saw other findings in these mice that are very similar to EoE in humans, such as the esophageal cells lining the esophagus proliferating. They even saw that new blood vessels were being created in that tissue that's getting inflamed.

[14:00] Dr. Lee thinks it's a very nice paper because it shows that correlation: Increase TSLP and you see these eosinophils going to the esophagus, and these changes that are very reminiscent of what we see in people with EoE.

[14:51] In this paper, the mice made the TSLP, and researchers were able to measure the TSLP in the esophageal tissue. The researchers didn't introduce TSLP into the mice. The mice made the TSLP in response to being repeatedly exposed to oxazolone.

[15:20] That's key to the importance of the laboratory work. The fact that the TSLP is made by the mice is important. It makes it a very realistic model for what we're seeing in people.

[15:41] In science, we like to see correlation. The researchers showed a nice correlation.

[15:46] When TSLP went up in these mice, and the mice were making more TSLP on their own, at the same time, they saw all these changes in the esophagus that look a lot like what EoE looks like in people.

[16:01] They saw the eosinophils coming into the esophagus. They saw the inflammation go up in the esophagus. What Dr. Lee liked about this paper is that they continued the story.

[16:15] The researchers took something that decreases TSLP levels, an antibody that binds to and blocks TSLP, and when they did that, they saw the TSLP levels come down to half the peak level.

[16:35] Then they saw improvement in the inflammation in the esophagus. They saw that the amount of eosinophils decreased, and the multiplication of the esophageal cells went down. The number of new blood vessels went down after the TSLP was reduced.

[16:53] Dr. Lee says, you see correlation. The second part is evidence for causation. When you take TSLP away, things get better. That gives us a lot of confidence that this is a real finding. It's not just observational. There is causation evidence here.

[18:26] Ryan asks if cutting TSLP also help reduce other immune response cells. Dr. Lee says TSLP is the master regulator for this Type 2 inflammation. It definitely touches and influences other cells besides eosinophils.

[18:44] TSLP affects dendritic cells, which are an important type of immune cell, like a coordinating cell that instructs other cells within the immune system what to do. In this paper, they looked at a lot of other effects of TSLP on the tissues of the body.

[19:10] Dr. Lee says, There's a lot of research on TSLP, and one of the reasons we're excited about the promise of TSLP is that it's so far upstream; so much of the beginning, that it's affecting other cells.

[19:29] Its effects could be quite broad. If we're able to successfully block TSLP, we could block a lot of different effects.

[19:40] One treatment for EoE is dupilumab, which blocks IL-4 and IL-13 specifically, and that works well, but TSLP has the potential to have an even greater effect than blocking IL-4 and IL-13, since it is one step before turning on IL-4 and IL-13.

[20:14] That's one of the reasons researchers are excited about the promise of blocking TSLP. There are studies ongoing of TSLP blockers in people with EoE.

[20:34] Ryan asks if there are negative repercussions from blocking TSLP. Dr. Lee says in this study and in people, we are not completely blocking TSLP by any means. There will still be residual TSLP activated, even with very potent drugs.

[21:01] In the study, they block TSLP about 50%‒60%. TSLP is involved in immunity against parasites. In studies with people, they make sure not to include anybody who has an active parasitic infection. A person under treatment should not be in a study.

[21:27] Dr. Lee says we haven't seen any problems with parasitic infections becoming more severe, but that is a theoretical possibility, so for that reason, in studies with TSLP blockers, we generally exclude patients with known parasitic infections.

[22:17] What excited Dr. Lee in this paper was that they showed that when you block TSLP in the mice, then you get real effects in their tissues. Eosinophils went away. The thickening of the basal layers in the esophagus got much better.

[22:38] That kind of real effect reflected in the tissue is super exciting to see. That gives us more confidence that this could work in people, since we're seeing it in a realistic whole-body model in the mice.

[23:12] Dr. Lee says there are ongoing clinical studies on TSLP blockers for EoE. His company is studying an antibody that blocks TSLP in eczema, COPD, and EoE. One of the exciting things about immunology is that it affects many different parts of the body.

[23:42] EoE is associated with other immune-type disorders. There's a high percentage of patients with EoE who have other diseases. EoE coexists with asthma, atopic dermatitis, and chronic rhinitis.

[24:09] It's exciting that if you figure out something that's promising for one disease that TSLP affects, it could have very broad-ranging implications for a variety of diseases.

[24:22] Ryan shares his experience of his doctor talking to him about a TSLP blocker, tezepelumab, as a potential option when it's out of clinical trials. It would target something a little higher up the chain and help with some of his remaining symptoms.

[24:59] Ryan is excited to hear that this research is so encouraging and how it could potentially help treat EoE, asthma, and other conditions, all at once.

[25:16] Dr. Lee says that being in these later-stage studies is super exciting. If these late-stage trials are successful, the next step is to apply for regulatory approval with the various agencies around the world.

[26:40] Dr. Lee shares one takeaway for listeners to remember. Think of TSLP as an alarm that turns on inflammation. He compares TSLP to turning on an alarm during a robbery. There are multiple steps designed to protect the bank and the money.

[27:20] To extend that analogy, with TSLP, once you turn it on, all these other steps are going to happen. Inflammation is designed to protect the body. It's a protective response. If there's an infection, it can clear the infection.

[27:38] If the infection persists, as in HIV, the immune response, which is protective and beneficial, eventually becomes damaging. It becomes dysfunctional. In EoE, if you continually eat the allergic food, the inflammation becomes damaging to the esophagus.

[28:27] Long-term inflammation leads to replacing the normal esophageal tissue with fibrotic tissue, and that's why the esophagus eventually gets hardened and less able to let the food go through.

[28:40] In respiratory diseases, the soft tissue of the lung gets replaced with thicker tissue, and the lung is not able to expand.

[28:54] Dr. Lee says he people to think about TSLP as this master alarm switch. We hope that if you could turn off that TSLP, you could then avoid a lot of the complications that we see with chronic inflammation in these conditions.

[29:14] We're hopeful that you could even take away the symptoms that you see in these diseases, make patients feel better, and with extended treatment, you could begin to reverse some of the damage resulting from inflammation.

[29:32] Ryan likes that analogy and how Dr. Lee has concisely explained these complicated concepts.

[29:51] Dr. Lee thanks Holly and Ryan and adds one more plea to listeners. Please consider getting involved with research. Clinical trials cannot be done without patients. We need patients to advance new treatments.

[30:27] Researchers like Dr. Lee spend a lot of time thinking about how to make the studies not only informative but also fair to patients who decide to become involved. It's a lot of work and a fair amount of time commitment.

[30:44] If you don't want to be in a study, you can help by being on a patient feedback panel and reviewing protocols and informed consents. Follow your interests. Think about getting involved with research, however you can.

[31:06] Ryan and Holly are very grateful for the community, with so many wonderful clinicians and researchers, and so many patients who are willing to volunteer their time and their data to help researchers find better solutions going forward.

[31:26] Ryan thanks Dr. Lee for coming on and putting out that call to action. It's a great reminder for listeners and the patients in the community to look for those opportunities. Chat with your physician. Go to APFED's website. There's a link to active clinical trials.

[31:47] For our listeners who want to learn more about eosinophilic disorders, we encourage you to visit apfed.org and check out the links in the show notes below.

[31:53] For those looking to find specialists who treat eosinophilic disorders, we encourage you to use APFED's Specialist Finder at http://apfed.org/specialist.

[32:01] If you'd like to connect with others impacted by eosinophilic diseases, please join APFED's online community on the Inspire Network at https://apfed.org/connections.

[32:11] Ryan thanks Dr. Andrew Lee for joining us today. We learned a lot. Holly also thanks APFED's Education Partners Bristol Myers Squibb, GSK, Sanofi, Regeneron, and Takeda for supporting this episode.

Mentioned in This Episode:

Andrew Lee, M.D., VP Clinical Research, Uniquity Bio

"A Mouse Model for Eosinophilic Esophagitis (EoE)" Current Protocols, Wiley Online Library

APFED on YouTube, Twitter, Facebook, Pinterest, Instagram

Real Talk: Eosinophilic Diseases Podcast

https://apfed.org/specialist

https://apfed.org/connections

http://apfed.org/research/clinical-trials

Education Partners: This episode of APFED's podcast is brought to you thanks to the support of Bristol Myers Squibb, GSK, Sanofi, Regeneron, and Takeda.

Tweetables:

"I see drug development as a chance to apply cutting-edge research to benefit people." — Andrew Lee, M.D.

"When the cells that line the GI tract and the cells that line the airways in our lungs receive an insult or an injury, they get a danger signal, then they make TSLP." — Andrew Lee, M.D.

"Observational studies have found that some people with genetic variations that lead to higher levels of TSLP in their bodies had an increased risk for allergic inflammatory diseases like EoE, atopic dermatitis, and asthma." — Andrew Lee, M.D.

"There's a lot of research on TSLP, and one of the reasons we're excited about the promise of TSLP is that it's so far upstream; so much of the beginning, that it's affecting other cells." — Andrew Lee, M.D.

"Please consider getting involved with research. We can't do these clinical trials without patients. We need patients to advance new treatments for patients." — Andrew Lee, M.D.

Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED's Health Sciences Advisory Council, interview three high school students who made less invasive EoE diagnostics the focus of a science fair project.

Disclaimer: The information provided in this podcast is designed to support, not replace, the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.

Key Takeaways:

[:51] Co-host Ryan Piansky introduces the episode, brought to you thanks to the support of Education Partners Bristol Myers Squibb, GSK, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz.

[1:08] Holly introduces today's guests, three high school students from Texas who made EoE diagnostics the focus of a science fair project: Leyna, Nhu, and Jaden.

[1:47] Leyna, Nhu, and Jaden are best friends. Nhu was diagnosed with EoE last summer. Leyna said Nhu told them it took a long time for the doctors to diagnose her because they thought it could be different conditions.

[2:07] Nhu told them about her appointments and her endoscopy procedures. She had to miss school sometimes. Leyna and Jaden were concerned for her.

[2:22] Leyna took AP Bio. Her teacher was a sponsor for the science fair. Leyna thought this would be a meaningful project for the three friends to learn more about Nhu's condition.

[2:45] Holly shares that she wasn't diagnosed until her 20s, but she was sick for much of her childhood.

[3:13] Ryan shares that he was diagnosed when he was two, after two years of his parents taking him to different doctors and undergoing different tests.

[3:31] Nhu says it was hard to find a specialist. They found one and had to wait six months for an appointment. It was a long time, suffering from the effects of EoE with constant symptoms, a lot of heartburn, and painful vomiting.

[4:00] Nhu was diagnosed with EoE in her sophomore year of high school. Her friends have seen her endure a lot, but she's strong. Nhu had to miss an orchestra concert where she had a big solo, because of her EoE.

[4:32] Doctors thought Nhu could have something different, like H. Pylori or cyclic vomiting syndrome. They didn't have clear answers, which was confusing and frustrating for her family.

[4:50] Holly talks about how difficult it was for her to get a diagnosis, and how she was told she was vomiting to get attention. She shared her reaction when diagnosed. She would like someone to do a research study about the pain tolerance of people with EoE.

[5:41] Leyna says junior year is the hardest year of high school. She doesn't know how Nhu survived physics and AP classes with EoE on top of it, and making up late work.

[6:14] Nhu takes a weekly injection. Her symptoms happen almost monthly. Sometimes she misses school for two weeks and has to catch up on work. Leyna and Jaden help her with her schoolwork.

[6:47] Ryan shared how he missed a third of his senior year in high school. He's now on an injectable biologic that has helped him a lot. That treatment option wasn't available when he was in high school. Having supportive friends to send him his schoolwork and keep him up-to-date was very helpful.

[7:11] Ryan explains the esophageal string test (EST). This is a tool that was developed to help monitor eosinophilic esophagitis (EoE). The test works by having the patient swallow a capsule about the size of a Tic Tac that has a string attached.

[7:25] The capsule dissolves in the stomach while the string stays in place in the esophagus. After about an hour, it's gently removed. Along the way, the string collects samples from the lining of the esophagus, which are reviewed, similarly to a biopsy.

[7:37] Holly adds that what makes the string test unique is that it doesn't require an endoscope, anesthesia, or recovery time, things that usually come with a traditional endoscopy and biopsy.

[7:46] It's now being used with patients as young as four years old. While some people might feel some minor discomfort, it's generally much easier for regular monitoring than an endoscopy.

[7:57] Holly explains that she was involved in testing the device and developing a swallowing protocol for it at Children's Hospital of Colorado. We will talk more about this later in the episode.

[8:06] Ryan adds, to learn more about the development of the string test, listen to episode 26 of this podcast.

[8:10] The string test is one of multiple, less-invasive monitoring tools for eosinophilic esophagitis. Others include the sponge test and unsedated trans-nasal endoscopy.

[8:19] To learn more about unsedated transnasal endoscopy, listen to episodes 19 and 20, where we talk to clinicians and patients about this method.

[8:27] During that episode, we talked to the developers of the EST.

[8:38] Jaden tells how he, Leyna, and Nhu brainstormed ideas and decided to base their project specifically on how to diagnose EoE in a less invasive way than endoscopies.

[9:12] Before this project, they were not familiar with the EST. Nhu says her only option for diagnosis was an endoscopy.

[9:21] Holly says it's still like that in Maine. She came from an area of the country where the EST was researched, and it's interesting to her that she doesn't have access to it now.

[9:37] What appealed to the group about the EST as an alternative to endoscopies is that it was so different. There are so many advanced technologies, and the EST is just a capsule taped to a string. It is simple but innovative.

[10:13] Real Talk: Eosinophilic Diseases had Drs. Robin Shandas and Steven Ackerman, who were instrumental in the development of the esophageal string test, as guests on episode 26 of this podcast. Ryan encourages listeners to check out that episode at apfed.org/podcasts.

[10:42] They searched for keywords and analyzed a variety of scholarly literature. They collected a lot of data from Dr. Ackerman's papers.

[11:10] They also reached out to gastroenterologists on social media. A hard thing about science fair projects is coming up with an experiment. They didn't know what they could do just with compiled research, but they had a great sponsor who helped along the way.

[11:56] Leyna says they trusted that the doctors they reached out to on social media were competent in their understanding of different diagnostic methods. She notes that different locations may have different resources and different biases.

[12:14] Leyna says they talked to doctors in the U.S. and from different countries, including India and Mexico. She commented that communities in Mexico might not have the same resources as communities in the U.S. or India. That might change their understanding of the EST.

[12:33] We might have different biases because we don't have the same technology to research and find the same things about the EST.

[13:12] Leyna says they reached out to doctors on social media, but didn't get responses from that many doctors. Reaching out to patients would be a good thing if they want to continue the project.

[14:00] Jaden says most of the data they found was from Dr. Ackerman, including a survey he did comparing the data of the EST and the biopsies.

[14:10] They found that the EST and the biopsies were relatively similar in terms of discovering the eosinophilic count and determining whether the EoE is active or inactive.

[15:30] They found differences between ESTs and biopsies in finding how much of a certain chemical is in the patient's cells.

[14:43] Leyna comments that one of the doctors they reached out to told them about the sponge test, another less invasive method. They didn't research the sponge test, but it sounded interesting.

[15:00] Ryan says there are a lot of cool new techniques that are being researched, like the transnasal endoscopy that goes in through the nose, the string test, and the sponge test.

[15:13] Leyna says the cool thing was hearing about all these methods. They had hypothesized that there are less invasive methods that may be better than endoscopies.

[15:27] They were not able to prove their hypothesis yet. They learned a lot of different things that could be beneficial.

[15:42] Holly points out that the transnasal endoscopy is not scary. It's also known as the unsedated endoscopy. Holly has done both the EST and the unsedated endoscopy, and they each have pluses and minuses.

[16:15] Nhu explains how the team would meet at one of their houses, usually Leyna's house. One day, they watched Interstellar together, and the "Eureka moment" scene motivated them.

[16:41] They helped each other whenever necessary. When the project board was due, they all went to Leyna's house to work on the project board. They worked together as a team.

[16:51] Jaden analyzed a lot of the data. Leyna reached out to professors. Nhu helped Jaden understand some terms. On the day they presented the project, Nhu was sick in the hospital, which made them sad. They included a photo of her on the project board.

[17:28] Holly says that although Nhu wasn't there, it may have helped people know how sick EoE can make you feel.

[18:28] Leyna says one of the doctors they reached through social media told them that endoscopies have lots of benefits. The biopsy samples give healthcare professionals a clear idea of how many eosinophils per high-powered field, a key indicator in diagnosing EoE.

[18:57] The diagnosis gives a baseline for starting treatment for the patient, monitoring how effective the treatment is. You can't count the number of eosinophils per high-powered field using the string test.

[19:11] The EST is a gelatin capsule attached to a long string that you swallow. It dissolves in the stomach. It's less expensive than an endoscopy.

[19:33] Holly says one of the big differences is that you can't diagnose EoE on a string test. It has to be diagnosed with an endoscopy.

[19:40] Leyna says they learned that from the doctors and medical students who reviewed their project board. You can't diagnose EoE with the EST, but you can monitor it.

[19:52] The string test doesn't provide a direct eosinophil count, but it reflects the level of inflammation in your esophagus, and it can measure the protein biomarkers. That correlates with the eosinophil count from a biopsy. It is good for monitoring EoE.

[20:12] Ryan says that's a great idea. In the show notes, there is a link to the diagnostic consensus guidelines. They specify that you need an endoscopy and 15 eosinophils per high-powered field to be diagnosed with EoE.

[20:28] The EST can monitor the progression of the disorder as you're trying new medicines or an elimination diet. If you need an endoscopy every three to six months, it can be taxing.

[20:49] Ryan comments on the cost. Going through anesthesia for an endoscopy is very expensive, and not everyone has the insurance to cover these diagnostic procedures. The EST is an option you can do in a doctor's office in just over an hour.

[21:16] Holly asks if Nhu has participated in a string test. Nhu has not, but she would love to do a string test if she had the chance. Whenever she sees her doctor, she brings up her condition, and what could be better for her, such as the string test.

[22:06] The science fair is a huge regional fair in Houston, called the Science and Engineering Fair of Houston (SEFH). This was their first year participating. They were regional qualifiers from their district. When they got there, everyone else had six-foot-tall printed boards. It was a shock to them.

[22:56] They hope to level up their board for next year's fair. It was cool and eye-opening to see all these student researchers and get feedback from the people who walked by their booth. They heard some interesting things to use in their next project.

[23:15] One medical student in attendance came by their project board and suggested that while the EST may not diagnose EoE, maybe it could be used as a screening tool [to help identify people who should follow up with a gastroenterologist for a diagnostic work-up]. Interestingly, this was a medical student, and she had recently scheduled an appointment with a gastroenterologist for an endoscopy to see if she has EoE.

[24:04] This student didn't seem to know much about EoE, but felt she was experiencing symptoms that might indicate EoE. She told them she had learned so much from their board. Ryan says it's great that the project was able to help this person.

[24:44] Jaden says that the students at their school didn't know much about EoE, but when they looked at the project board, they were shocked by how incredibly difficult it is to diagnose EoE and how the EST could change a lot of things as a screening method.

[25:11] Jaden says their science teacher came by to see their board and how they were doing. He liked how they included not only the research information but also the stories of why they chose their project and why they were passionate about it.

[25:34] The day of the project, Leyna and Jaden were sad that Nhu couldn't be there with them. Their sponsor, Leyna's biology teacher, was sick, but showed up at the fair to view their presentation. They raised awareness about EoE. People learned about it.

[25:54] When Nhu told Leyna about her EoE, Leyna had no idea what it was. She's glad their project brought the issue to the table. They emphasized that more research needs to be done. There is much we don't know about less invasive methods.

[26:23] Nhu has considered a career in medicine since she has been in many hospitals and talked to a lot of doctors. Jaden sees himself in the engineering field, but he enjoys researching like this and seeing things through a different perspective.

[27:05] Nhu learned a lot about herself with EoE. Leyna loves how much they learned from this project. She is interested in pursuing scientific research. She thinks it's cool that Ryan is a graduate student.

[27:24] Leyna just got back from a five-week summer research program. It was insightful. She doesn't see herself becoming a doctor, but possibly doing research and advocating for different conditions.

[27:43] When Ryan was in high school, with all his hospital time, he had an interest in medicine, then he took a turn into engineering. He enjoys research. He's passionate about engaging in patient advocacy work through APFED.

[28:10] Ryan is glad for Leyna, Nhu, and Jaden that they were able to engage with this research and do it as a group and as friends. He says it's fantastic to hear from the group about the whole process they went through.

[28:23] Holly asks, looking back on everything you guys learned and experienced in this project, what's one question or idea you would still like to explore if you had more time and resources?

[28:38] Nhu wants to research finding more ways to diagnose EoE. Testing for EoE and finding EoE are very interesting for her.

[28:53] Jaden thinks that if they had more time, they would try to create a model of the EST to show how it works. He would possibly try to improve upon the model or develop something new. Instead of just relying on the data we have, he would try to collect data.

[29:26] Leyna agrees. She would like to build a prototype, understand how the capsule works, and find out whether the string down the esophagus is uncomfortable.

[33:41] Ryan suggests there is a doctor who would let them try the string test so they could see how it feels. Holly tried the string test at a major children's hospital while it was being researched. She doesn't want to ask her patients to do something she hasn't done, since she has the diagnosis too.

[30:37] Ryan comments that he enjoyed hearing about the process of the project.

[30:51] Ryan gives a quick recap: The esophageal string test is a tool to help monitor EoE. It is not a tool to diagnose EoE. If you or a loved one has EoE or suspect that you might, ask your clinician about the string test to see if it's an option for you.

[31:03] Holly adds: School science fairs are one way to bring education about eosinophilic disorders to schools. We love hearing about community science fairs and school projects that teach others about these conditions.

[31:13] For those of you looking to learn more about eosinophilic esophagitis, we encourage you to visit http://apfed.org/EoE.

[31:23] For those looking to find specialists who treat EoE, we encourage you to use APFED's Specialist Finder at http://apfed.org/specialist.

[31:30] Ryan thanks Leyna, Nhu, and Jaden for joining us today. Holly also thanks APFED's Education Partners Bristol Myers Squibb, GSK, Sanofi, Regeneron, and Takeda for supporting this episode.

Mentioned in This Episode:

Dr. Robin Shandas

Dr. Steven Ackerman

"Updated international consensus diagnostic criteria for eosinophilic esophagitis: Proceedings of the AGREE conference"

APFED on YouTube, Twitter, Facebook, Pinterest, Instagram

Real Talk: Eosinophilic Diseases Podcast

https://apfed.org/specialist

https://apfed.org/connections

Education Partners: This episode of APFED's podcast is brought to you thanks to the support of Bristol Myers Squibb, GSK, Sanofi, Regeneron, and Takeda.

Tweetables:

"Nhu and Jaden are my best friends. Recently, Nhu was diagnosed with EoE. I remember her telling us about the long diagnosis process. It took the doctors quite a long time to diagnose her because they thought it could be different conditions." — Leyna

"I thought that this would be a meaningful project for us to learn more about Nhu's condition [of EoE]." — Leyna

"The students at our school didn't know much about EoE, but when they looked at the project board, they were shocked by how incredibly difficult it is to diagnose EoE." — Jaden

"One of the main benefits of the string test is that endoscopies can be quite expensive, especially the anesthesia. It could be beneficial for people who don't have the money for an endoscopy." — Nhu

Description:

Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED's Health Sciences Advisory Council, interview Anna Henderson, MD, a pediatric gastroenterologist at Northern Light Health in Maine, about bone mineral density in EoE patients. They discuss a paper she co-authored on the subject.

Disclaimer: The information provided in this podcast is designed to support, not replace, the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.

Key Takeaways:

[:50] Co-host Ryan Piansky introduces the episode, brought to you thanks to the support of Education Partners Bristol Myers Squibb, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz.

[1:17] Holly introduces today's topic, eosinophilic esophagitis (EoE), and bone density.

[1:22] Holly introduces today's guest, Dr. Anna Henderson, a pediatric gastroenterologist at Northern Light Health in Maine.

[1:29] During her pediatric and pediatric gastroenterology training at Cincinnati Children's Hospital, she took a special interest in eosinophilic esophagitis. In 2019, Dr. Henderson received APFED's NASPGHAN Outstanding EGID Abstract Award.

[1:45] Holly, a feeding therapist in Maine, has referred many patients to Dr. Henderson and is excited to have her on the show.

[2:29] Dr. Henderson is a wife and mother. She loves to swim and loves the outdoors. She practices general pediatric GI in Bangor, Maine, at a community-based academic center.

[2:52] Her patient population is the northern two-thirds of Maine. Dr. Henderson feels it is rewarding to bring her expertise from Cincinnati to a community that may not otherwise have access to specialized care.

[3:13] Dr. Henderson's interest in EoE grew as a GI fellow at Cincinnati Children's. Her research focused on biomarkers for disease response to dietary therapies and EoE's relationship to bone health.

[3:36] As a fellow, Dr. Henderson rotated through different specialized clinics. She saw there were many unanswered questions about the disease process, areas to improve treatment options, and quality of life for the patients suffering from these diseases.

[4:00] Dr. Henderson saw many patients going through endoscopies. She saw the social barriers for patients following strict diets. She saw a huge need in EoE and jumped on it.

[4:20] Ryan grew up with EoE. He remembers the struggles of constant scopes, different treatment options, and dietary therapy. Many people struggled to find what was best for them before there was a good approved treatment.

[4:38] As part of Ryan's journey, he learned he has osteoporosis. He was diagnosed at age 18 or 19. His DEXA scan had such a low Z-score that they thought the machine was broken. He was retested.

[5:12] Dr. Henderson explains that bone mineral density is a key measure of bone health and strength. Denser bones contain more minerals and are stronger. A low bone mineral density means weaker bones. Weaker bones increase the risk of fracture.

[5:36] DEXA scan stands for Dual Energy X-ray Absorptiometry scan. It's a type of X-ray that takes 10 to 30 minutes. A machine scans over their bones. Typically, we're most interested in the lumbar spine and hip bones.

[5:56] The results are standardized to the patient's height and weight, with 0 being the average. A negative number means weaker bones than average for that patient's height and weight. Anything positive means stronger bones for that patient's height and weight.

[6:34] A lot of things can affect a patient's bone mineral density: genetics, dietary history, calcium and Vitamin D intake, and medications, including steroid use. Prednisone is a big risk factor for bone disease.

[7:07] Other risk factors are medical and auto-immune conditions, like celiac disease, and age. Any patient will have their highest bone density in their 20s to 30s. Females typically have lower bone mineral density than males.

[7:26] The last factor is lifestyle. Patients who are more active and do weight-bearing exercises will have higher bone mineral density than patients who have more of a sedentary lifestyle.

[7:56] Ryan was told his bone mineral density issues were probably a side-effect of the long-term steroids he was on for his EoE. Ryan is now on benralizumab for eosinophilic asthma. He is off steroids.

[8:36] Dr. Henderson says the research is needed to find causes of bone mineral density loss besides glucocorticoids.

[8:45] EoE patients are on swallowed steroids, fluticasone, budesonide, etc. Other patients are on steroids for asthma, eczema, and allergic rhinitis. These may be intranasal steroids or topical steroids.

[9:01] Dr. Henderson says we wondered whether or not all of those steroids and those combined risks put the EoE population at risk for low bone mineral density. There's not a lot published in that area.

[9:14] We know that proton pump inhibitors can increase the risk of low bone mineral density. A lot of EoE patients are on proton pump inhibitors.

[9:23] That was where Dr. Henderson's interest started. She didn't have a great way to screen for bone mineral density issues or even know if it was a problem in her patients more than was expected in a typical patient population.

[9:57] Holly wasn't diagnosed with EoE until she was in her late 20s. She was undiagnosed but was given prednisone for her problems. Now she wonders if she should get a DEXA scan.

[10:15] Holly hopes the listeners will learn something and advocate for themselves or for their children.

[10:52] If a patient is concerned about their bone mineral density, talking to your PCP is a perfect place to start. They can discuss the risk factors and order a DEXA scan and interpret it, if needed.

[11:11] If osteoporosis is diagnosed, you should see an endocrinologist, specifically to discuss therapy, including medications called bisphosphonates.

[11:36] From an EoE perspective, patients can talk to their gastroenterologist about what bone mineral density risk factors may be and if multiple risk factors exist. Gastroenterologists are also more than capable of ordering DEXA scans and helping their patients along that journey.

[11:53] A DEXA scan is typically the way to measure bone mineral density. It's low radiation, it's easy, it's fast, and relatively inexpensive.

[12:10] It's also useful in following up over time in response to different interventions, whether or not that's stopping medications or starting medications.

[12:30] Dr. Henderson co-authored a paper in the Journal of Pediatric Gastroenterology and Nutrition, called "Prevalence and Predictors of Compromised Bone Mineral Density in Pediatric Eosinophilic Esophagitis." The study looked at potential variables.

[12:59] The researchers were looking at chronic systemic steroid use. They thought it was an issue in their patients, especially patients with multiple atopic diseases like asthma, eczema, and allergic rhinitis. That's where the study started.

[13:22] Over the years, proton pump inhibitors have become more ubiquitous, and more research has come out. The study tried to find out if this was an issue or not. There weren't any guidelines for following these patients, as it was a retrospective study.

[13:42] At the time, Dr. Henderson was at a large institution with a huge EoE population. She saw that she could do a study and gather a lot of information on a large population of patients. Studies like this are the start of figuring out the guidelines for the future.

[14:34] Dr. Henderson wanted to determine whether pediatric patients with EoE had a lower-than-expected bone mineral density, compared to their peers. [14:44] Then, if there were deficits, she wanted to determine where they were more pronounced. Were they more pronounced in certain subgroups of patients with EoE?

[14:59] Were they patients with an elemental diet? Patients with an elimination diet? Were they patients on steroids or PPIs? Were they patients with multiple atopic diseases? Is low bone mineral density just a manifestation of their disease processes?

[15:14] Do patients with active EoE have a greater propensity to have low bone mineral density? The study was diving into see what the potential risk factors are for this patient population.

[15:45] The study was a retrospective chart review. They looked at patients aged 3 to 21. You can't do a DEXA scan on a younger patient, and 21 is when people leave pediatrics.

[16:03] These were all patients who had the diagnosis of EoE and were seen at Cincinnati Children's in the period between 2014 and 2017. That period enabled full ability for chart review. Then they looked at the patients who had DEXA scans.

[16:20] They did a manual chart review of all of the patients and tried to tease out what the potential exposures were. They looked at demographics, age, sex, the age of the diagnosis of EoE, medications used, such as PPIs, and all different swallowed steroids.

[16:44] They got as complete a dietary history as they could: whether or not patients were on an elemental diet, whether that was a full elemental diet, whether they were on a five-food, six-food, or cow's milk elimination diet.

[16:58] They teased out as much as they could. One of the limitations of a retrospective chart review is that you can't get some of the details, compared to doing a prospective study. For example, they couldn't tease out the dosing or length of therapy, as they would have liked.

[17:19] They classified those exposures as whether or not the patient was ever exposed to those medications, whether or not they were taking them at the time of the DEXA scan, or if they had been exposed within the year before the DEXA scan.

[17:40] They also looked at whether the patients had other comorbid atopic disorders, to see if those played a role, as well.

[18:03] The study found that there was a slightly lower-than-expected bone mineral density in the patients. The score was -0.55, lower than average but not diagnostic of a low bone mineral density, which would be -2 or below.

[18:27] There were 23 patients with low bone mineral density scores of -2 or below. That was 8.6% of the study patients. Typically, only 2.5% of the population would have that score. It was hard to tease out the specific risk factors in a small population of 23.

[18:57] They looked at what the specific risk factors were that were associated with low bone mineral density, or bone mineral density in general.

[19:12] After moving from Colorado, Holly has transferred to a new care team, and doctors wanted her baseline Vitamin D and Calcium levels. No one had ever tested that on her before. Dr. Henderson says it's hard because there's nothing published on what to do.

[19:58] The biggest surprise in the study was that swallowed steroids, or even combined steroid exposure, didn't have any effect on bone mineral density. That was reassuring, in light of what is known about glucocorticoid use.

[20:16] The impact of PPI use was interesting. The study found that any lifetime use of PPIs did seem to decrease bone mineral density. It was difficult to tease out the dosing and the time that a patient was on PPIs.

[20:34] Dr. Henderson thinks that any lifetime use of PPIs is more of a representation of their cumulative use of PPIs. At the time of the study, from 2014 to 2017, PPIs were still very much first-line therapy for EoE; 97% of the study patients had taken PPIs at some time.

[21:02] There are so many more options now for therapy when a patient has a new diagnosis of EoE, especially with dupilumab now being an option.

[21:11] Dr. Henderson speaks of patients who started on PPIs and have stayed on them for years. This study allows her to question whether we need to continue patients on PPIs. When do we discuss weaning patients off PPIs, if appropriate?

[22:05] Ryan says these podcasts are a great opportunity for the community at large and also for the hosts. He just wrote himself a note to ask his endocrinologist about coming off PPIs.

[22:43] Dr. Henderson says that glucocorticoid use is a known risk factor for low bone mineral density and osteoporosis. In the asthma population, inhaled steroids can slightly decrease someone's growth potential while the patient is taking them.

[23:10] From those two facts, it was thought that swallowed steroids would have a similar effect. But since they're swallowed and not systemic, maybe things are different.

[23:23] It was reassuring to Dr. Henderson that what her study found was that the swallowed steroid didn't affect bone mineral density. There was one other study that found that swallowed steroids for EoE did not affect someone's height.

[23:51] Dr. Henderson clarifies that glucocorticoids include systemic steroids like prednisone and hydrocortisone.

[23:57] Based on Dr. Henderson's retrospective study, fluticasone as a swallowed steroid did not affect bone mineral density. It was hard to tease out the dosing, but the cumulative use did not seem to result in a deficit for bone mineral density.

[24:16] Holly shared that when she tells a family of a child she works with that the child's gastroenterologist will likely recommend steroids, she will now give them the two papers Dr. Henderson mentioned. There are different types of steroids. The average person doesn't know the difference.

[25:15] Dr. Henderson thinks that for patients who have multiple risk factors for low bone mineral density, it is reasonable to have a conversation about bone health with their gastroenterologist to see whether or not a DEXA scan would be worth it.

[25:56] If low bone mineral density is found, that needs to be followed up on.

[26:03] There are no great guidelines, but this study is a good start on what these potential risk factors are. We need some more prospective studies to look at these risk factors in more detail than Dr. Henderson's team teased out in this retrospective study.

[26:23] Dr. Henderson tells how important it is for patients to participate in prospective longitudinal studies for developing future guidelines.

[26:34] Holly points out that a lot of patients are on restrictive diets. It's important to think about the whole picture if you are starting a medication or an elimination, or a restricted diet. You have to think about the impact on your body, overall.

[27:11] People don't think of dietary therapy as medication, but it has risks and benefits involved, like a medication.

[27:50] Dr. Henderson says, in general, lifestyle management is the best strategy for managing bone health. Stay as active as you can with weight-bearing exercises and eating a well-balanced diet. If you are on a restrictive diet, make sure it's well-balanced.

[28:12] Dr. Henderson says a lot of our patients have feeding disorders, so they see feeding specialists like Holly. A balanced diet is hard when kids are very selective in their eating habits.

[29:10] Dr. Henderson says calcium and Vitamin D are the first steps in how we treat patients with low bone mineral density. A patient who is struggling with osteoporosis needs to discuss it with their endocrinologist for medications beyond supplementation.

[29:31] Ryan reminds listeners who are patients always to consult with their medical team. Don't go changing anything up just because of what we're talking about here. Ask your care team some good questions.

[29:47] Dr. Henderson would like families to be aware, first, that some patients with EoE will have bone mineral density loss, especially if they are on PPIs and restrictive diets. They should start having those discussions with their providers.

[30:04] Second, Dr. Henderson would like families to be reassured that swallowed steroids and combined steroid exposure didn't have an impact on bone mineral density. Everyone can take that away from today's chat.

[30:18] Lastly, Dr. Henderson gives another plug for patient participation in prospective studies, if they're presented with the opportunity. It's super important to be able to gather more information and make guidelines better for our patients.

[30:35] Holly thanks Dr. Henderson for coming on Real Talk — Eosinophilic Diseases and sharing her insights on bone mineral density, and supporting patients in Maine.

[30:57] Dr. Henderson will continue to focus on the clinical side. She loves doing outreach clinics in rural Maine. It's rewarding, getting to meet all of these patients and taking care of patients who would otherwise have to travel hours to see a provider.

[32:01] Ryan thinks the listeners got a lot out of this. For our listeners who would like to learn more about eosinophilic disorders, please visit http://apfed.org and check out the links in the show notes.

[32:11] If you're looking to find specialists who treat eosinophilic disorders, we encourage you to use APFED's Specialist Finder at http://apfed.org/specialist.

[32:19] If you'd like to connect with others impacted by eosinophilic diseases, please join APFED's online community on the Inspire Network at http://apfed.org/Connections/.

[32:28] Ryan thanks Dr. Henderson for joining us today for this great conversation. Holly also thanks APFED's Education Partners Bristol Myers Squibb, Sanofi, Regeneron, and Takeda for supporting this episode.

Mentioned in This Episode:

Anna Henderson, MD, a pediatric gastroenterologist at Northern Light Health in Maine

Cincinnati Children's

"Prevalence and Predictors of Compromised Bone Mineral Density in Pediatric Eosinophilic Esophagitis."

Journal of Pediatric Gastroenterology and Nutrition

APFED on YouTube, Twitter, Facebook, Pinterest, Instagram

Real Talk: Eosinophilic Diseases Podcast

https://apfed.org/specialist

https://apfed.org/connections

Education Partners: This episode of APFED's podcast is brought to you thanks to the support of Bristol Myers Squibb, Sanofi, Regeneron, and Takeda.

Tweetables:

"DEXA scan stands for dual-energy X-ray absorptiometry scan. It's a type of X-ray where a patient lies down for 10 to 30 minutes. A machine scans over their bones. Typically, we're most interested in the lumbar spine and hip bones." — Anna Henderson, MD

"We wondered whether or not all of those steroids and those combined risks even put our EoE population at risk for low bone mineral density. There's not a lot published in that area." — Anna Henderson, MD

"If a patient is worried [about their bone mineral density], their PCP is a perfect place to start for that. They're more than capable of discussing the risk factors specific for that patient, ordering a DEXA scan, and interpreting it if need be." — Anna Henderson, MD

"I think we need some more prospective studies to look at these risk factors in a little bit more detail than we were able to tease out in our retrospective review." — Anna Henderson, MD

"Just another plug for the participation in prospective studies, if you're presented with the opportunity. It's super important to be able to gather more information and to be able to make guidelines better for our patients about these risks." — Anna Henderson, MD

Description:

Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED's Health Sciences Advisory Council, interview Bethany Doerfler, MS, RDN, a clinical research dietician specializing in lifestyle management of digestive diseases at Northwestern Medicine. Ryan and Holly discuss managing nutritional deficiencies in patients with non-EoE EGIDs and a study Bethany worked on.

Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.

Key Takeaways:

[:50] Co-host Ryan Piansky introduces the episode, brought to you thanks to the support of Education Partners Bristol Myers Squibb, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz.

[1:17] Holly introduces today's topic, common nutritional deficiencies that affect those with eosinophilic gastrointestinal diseases that occur in the GI tract lower than the esophagus (non-EoE EGIDs).

[1:31] Holly introduces today's guest, Bethany Doerfler, a clinical research dietician specializing in lifestyle management of digestive diseases, including gastroesophageal reflux disease, motility disorders, and eosinophilic diseases.

[1:45] Bethany currently practices as part of a multi-disciplinary team in a digestive health institute at Northwestern Medicine.

[2:03] Bethany began working with this disorder almost 20 years ago. She worked with Dr. Gonsalves and Dr. Hirano at Northwestern. Dr. Gonsalves invited her to work with EoE patients. Bethany had not heard of EoE.

[2:59] Bethany says the lens that we've used to look at food as the trigger and also a therapeutic agent in the esophagus, we're looking at in non-EoE EGIDs as well; at the same time, trying to make sure that we're honoring the other parts of our patient's lives.

[3:27] Before Bethany started working in GI at Northwestern, she worked in the Wellness Institute, doing nutrition for patients at Northwestern. Bethany has a research background in epidemiology and she wanted to see better nutrition research in GI.

[3:56] Through a friend, Bethany connected with the Chief of GI at that point. Northwestern had never had a dietician working in GI.

[4:08] Bethany is pleased to see a trend in healthcare of thinking about the patient as a whole person, including diet, psychological wellness, physical health, exercise, sleep, and more. Bethany wanted to see more research on GI disorders.

[4:38] Bethany says that eosinophils in the esophagus indicate that something is irritating the tissues, such as reflux, food triggers, aeroallergens, and other things.

[4:58] Eosinophils do belong in the stomach, the small intestine, and the colon. The challenge for researchers has been, how many, where are they supposed to live, and what are they supposed to look like.

[5:10] There is eosinophilic gastritis, where eosinophils can infiltrate the stomach, causing a lot of inflammatory responses that make patients sick. We see that in all parts of the small intestine and less commonly, in the colon, as well.

[5:32] It's a good reminder for listeners that eosinophils are white blood cells. When they're in the tissues, they can swell things up and cause the body to have this inflammatory response in these lower GI tract organs.

[5:49] The symptoms patients can experience are vomiting, diarrhea, and abdominal pain, among other things.

[6:14] The nomenclature for this subset of eosinophil-associated diseases has changed and Bethany says to hang tight, there is lots of work underway to nail this down further in the next couple of months to a year.

[6:29] The last guidelines were published by a Delphi Consensus in 2022. The experts in the field got together and voted on the scientific accuracy of certain statements to develop cut points for how to grade.

[6:48] The experts are asking questions like: What counts as eosinophilic gastritis? What do we think are some of the symptoms and the clinical findings so that we all are looking at things through the same lens?

[7:02] To get to these consensus statements, there's a lot of discussion, agreement, and good collegial discussions about making sure that we're looking at this accurately.

[7:12] We're trying to give the right names to the right disorders and give clear diagnostic criteria, so that we're helping our patients get a diagnosis, and we're not labeling something incorrectly and sticking someone with an inaccurate diagnosis.

[7:36] The proper terminology is eosinophilic gastritis in the stomach, eosinophilic enteritis in the small intestine, eosinophilic colitis in the colon, and eosinophilic gastroenteritis where the stomach and the small bowel are involved.

[7:53] There's more to come on the clinical criteria of what makes that diagnosis but we're getting the names and the numbers right.

[8:03] Holly agrees that having the symptoms given a named diagnosis is important to patients, knowing that researchers are looking into their illness.

[9:00] Bethany notes that the diagnosis also means that there are opportunities for medical therapy, cut points for which medicines or therapies work or not, and billing codes. If we can't bill insurance companies, patients might not get certain services.

[9:28] Ryan tells how beneficial it was for him to have access to multi-disciplinary teams and see specialists he might not have seen without the proper diagnosis and just thought it was a GI issue. He was fortunate to see a dietician and start dietary therapy.

[9:53] Bethany says the dietician's priority is the patient's health and wellness.

[10:13] These disorders carry clinical non-gastrointestinal manifestations: fatigue, concern over what to eat, food access issues, family support, and other food allergies. These are important things for a dietician to consider.

[10:37] Are patients growing as they should? Do they feel like they have enough to eat? Do they feel excluded in social settings? There's a list of important things that we want to be looking at. That's why it's important to have a multi-disciplinary approach.

[11:07] First, Bethany wants to see that her patients are physically and nutritionally well. That's a priority if we're going to try to get rid of some of the food triggers that could be exacerbating the disease.

[11:20] Before Bethany takes anything out of someone's diet, she wants to make sure that they're getting enough of the good stuff to help them feel good and grow.

[11:29] From a diet therapy perspective, Bethany is trying to apply a food removal or substitution protocol to other spots outside the esophagus. They're seeing that some of the triggers are very similar, both in the stomach and small intestine.

[12:09] Dr. Gonsalves, Dr. Hirano, and Bethany did a study, The Elemental Study, where they wanted to uncover if food proteins carried the same trigger risk in the stomach and small intestine as they do in the esophagus.

[12:35] They put their patients on a hypoallergenic elemental formula for a period, followed up, and looked at their biopsies of the stomach and small intestine. Fifteen wonderful patients made it through the trial.

[12:56] One hundred percent of the patients achieved disease remission and felt better. There were some genetic alterations in the patients. Then they started the process of reintroducing foods over the year.

[13:15] That was not part of the original grant but was the team's clinical interest to see what it is that people are allergic to. Some of the common suspects: wheat, dairy, eggs, soy, and nuts, were found to be very common triggers for EoG and EoN, as well.

[13:47] The benefit of working with a dietician as part of your team is, first, we can remediate things the disease has caused nutritionally, and second, we can think about how diet can be a therapeutic tool to use with medications or instead of medication.

[14:15] If you want to use nutrition therapeutically, you don't have to stay there if it's not the right time to be taking things out of your diet. We have some good, safe, medical therapies. You can find your food triggers but you don't have to pick that lane forever.

[14:42] Holly and Ryan relate their experiences with traveling abroad and going on medical therapies when they can't stay on their diets.

[15:57] Bethany says low levels of vitamins and minerals in the blood can be caused by a disorder or an elimination diet. In the U.S., dairy is the biggest source of protein for young kids. It's also the biggest source of calcium and vitamin D.

[16:22] Dieticians often say, if we are going to use dietary therapy for EoE or non-EoE EGIDs, we have to think of this as a substitution diet. If we remove something, we have to replace it with something equally nutrient-dense.

[16:39] Bethany and her group look at serum values of Vitamin D, B12, and iron they assess for patients. For kids, instead of drawing blood, they piece together what they're taking against what they need and see if there are gaps to fill with food or supplements.

[17:32] In patients with non-EoE EGIDs, Bethany says we see the disease intersect with the food supply. When we take milk out, we're cutting the biggest source of calcium and Vitamin D. We have to replace calcium and Vitamin D.

[17:55] In the 1950s, a public health law allowed wheat to be enriched with folic acid and other B vitamins and iron. When we cut out wheat, our patients aren't getting enough iron or B vitamins. We have to replace those.

[18:16] For patients who have eosinophils in their stomach and small intestine, their absorption in the small bowel may be directly impacted.

[18:26] People can have low levels of protein in their blood, maybe because they're eating insufficient protein or maybe because the disease doesn't allow them to absorb protein sufficiently when there's swelling in the small intestine.

[18:44] There are other nutrients, like zinc, for people who have diarrhea, and magnesium if you can't eat a lot of whole grains and nuts, There are quite a few nutrients that Bethany is broadly looking at.

[18:54] Based on the absorption in the small intestine, patients' doctors need to look at their B12, folic acid, iron levels, and Vitamin D.

[19:12] Holly loves Bethany's terminology of replacing, not just eliminating, foods. She will use that terminology with her patients to make it feel more supportive for them.

[20:40] A lot of people want to get all their nutrients through their food. That's not always practical. Vitamin D is hard to get exclusively in your diet if you're not drinking milk or eating wild-caught fish. You have to rely on fortified foods or add supplements.

[21:15] One, we want to take a look at your diet and ask how are your calories. We want to make sure you're eating enough. Two, if we suspect there are some vitamin deficiencies, we check your blood or just empirically supplement you.

[21:36] Supplementation should be done carefully. There are some vitamins where you can get too much of a good thing. Vitamins stored in the fat need to be at levels sufficient for repletion, dictated by age and gender. Dieticians know what to recommend.

[22:19] For patients who have non-EoE EGIDs, some have tentative swallowing, so Bethany tries to do as many liquid or chewable safe options for supplements as possible.

[23:46] Holly works with patients who have feeding difficulty, so she appreciates the liquid and chewable supplements for easier swallowing and quicker absorption.

[24:08] Bethany mentions that some fortified oat, corn, and rice breakfast cereals are highly enriched with B vitamins and iron. Look at the labels. It can be a way to layer in more vitamins without purchasing a supplement.

[25:24] Holly doesn't think patients understand how valuable a good dietician can be. She had one patient with celiac who was taking a supplement with gluten in it! She reminds listeners to always consult your care team before making any changes to your treatment plan.

[25:59] Bethany's favorite thing to talk about is foods and where to find what. If listeners have questions, she is happy to post answers on the website.

[26:25] The American Academy of Pediatrics says a cup of vitamin-fortified juice a day is not too much sugar and is a good source of Vitamin C and other nutrients. The calcium and Vitamin D you get from a cup of fortified juice is very value-available.

[26:46] In the non-dairy drink world, some are nicely fortified and some are not. If you make your almond milk, you're missing out on the fortifications.

[27:11] Bethany likes some of the fortified juices and some of the enriched non-dairy milk options. Those are the best ways to get calcium and Vitamin D for people who need calories. Instead of water with meals, substitute an enriched drink with meals.

[27:33] Some people struggle with protein, probably because of their level of food restriction. The typical animal proteins are great. If you can do soy, a cup of soy milk has eight grams of protein. Soy is a complete protein that mimics animal proteins.

[28:04] Cook your cereal in soy milk. Use it as the base of a smoothie. This is before getting into protein powders. Try legume-based proteins, if you can handle legumes. Your supplements have to be personalized. That's the tricky part.

[28:30] If you have a lot of food allergies or intolerances, it may be worth talking to your gastroenterologist, allergist, or dietician about adding elemental formula as a supplement. Bethany uses it often with food allergy patients as a safe supplement.

[29:31] Bethany primarily treats adults but also young adults transitioning from the pediatric side into the adult world. Sometimes a feeding difficulty follows patients into adult treatment. We need everyone at the table to treat this immune-mediated disease.

[30:32] Patient advocacy groups like APFED have ways to help you find dieticians. Also, the Academy of Nutrition and Dietetics has "Find a Specialist" on their website. http://eatright.org. Dieticians can do telehealth if you are not near one.

[31:45] If the practice that you're in doesn't have a dietician, you could gently suggest they have one join the practice, or consult with the practice. Patient advocacy is strong.

[33:12] Bethany talks about getting an appointment with a dietician. On the pediatric side, it has to do with the billing code. Ask your insurance if they cover medical nutrition therapy, Billing Code 97802, and for which diseases. Insurance may have stipulations.

[34:14] If medical nutrition therapy is not a covered benefit, ask the dietician if they can do a sliding scale. Holly says she has seen plans in several states where the patient can use the HSA or FSA card to pay for medical nutrition therapy.

[34:49] Bethany believes in the pediatric world, where growth and development are concerns, there's a little bit better coverage.

[34:59] On the adult side, if Bethany has other diagnoses, like high blood pressure, or diabetes, she is also billing for those because she makes sure what she recommends is also in line with what is good for their heart and wellness in general.

[35:55] Bethany was intrigued to learn food proteins do trigger disease activity for our patients in the stomach and small intestine, just as in the esophagus.

[36:20] In the Elemental Trial, they were surprised to learn people with non-EoE EGIDs had more allergies than expected. They were more likely to have more than just one or two. They were also more likely to have rare food allergies like legumes or grains.

[36:43] A patient may want to learn all their food triggers, but they may be a highly allergic person and it may not be worth trying to remove all their food triggers.

[37:06] Bethany wants to remind listeners that the diet approach should be a substitution diet. If you take things out, you've got to replace them with other plants.

[37:18] There's great crossover nutrition between fruits and vegetables. Seeds are great as a fill-in for nuts. There are plenty of other whole grains out there besides wheat. There are lots of good ways to get that nutritional balance into your diet.

[37:31] For anyone who's eliminating a food group, even if you're substituting it, it's a good idea to talk to your doctor about filling in with a good multivitamin, multimineral supplement.

[37:59] Bethany says it's fun working with colleagues to look for other ways to look at this nutrition lens for patients with Non-EoE EGIDs.

[38:14] They are looking at noninvasive ways to find eosinophils to go faster with helping people find their food triggers without having to scope them.

[38:28] Bethany is hoping with that research to be able to help people learn how they can cheat, like having pizza once a month if they are allergic to dairy. That's a question for your care team, but we don't have a great science-based way to answer that.

[38:53] As we study more noninvasive ways to get at eosinophilic activity, we can give patients a little bit more freedom and quality of life. That's what Bethany is working on next.

[39:58] Holly thanks Bethany Doerfler for joining us on Real Talk — Eosinophilic Diseases. For our listeners, to learn more about eosinophilic disorders, please visit http://apfed.org and check out the links in the show notes.

[40:11] If you're looking to find specialists who treat eosinophilic disorders, we encourage you to use APFED's Specialist Finder at http://apfed.org/specialist.

[40:21] If you'd like to connect with others impacted by eosinophilic diseases, please join APFED's online community on the Inspire Network at http://apfed.org/Connections/.

[40:34] Holly thanks Bethany for joining us today. Holly also thanks APFED's Education Partners Bristol Myers Squibb, Sanofi, Regeneron, and Takeda for supporting this episode.

Mentioned in This Episode:

Bethany Doerfler, MS, RD, Clinical Research Dietician specializing in lifestyle management of digestive diseases at Northwestern Medicine

Dr. Nirmala Gonsalves

Dr. Ikuo Hirano (In Memoriam)

The Elemental Study, Gonsalves, Doerfler, Hirano

Academy of Nutrition and Dietetics

APFED on YouTube, Twitter, Facebook, Pinterest, Instagram

Real Talk: Eosinophilic Diseases Podcast

https://apfed.org/specialist

https://apfed.org/connections

Education Partners: This episode of APFED's podcast is brought to you thanks to the support of Bristol Myers Squibb, Sanofi, Regeneron, and Takeda.

Tweetables:

"The lens that we've used to look at food as the trigger and also a therapeutic agent in the esophagus, we're doing that in non-EoE EGIDs as well, and at the same time, trying to make sure that we're honoring the other parts of our patient's lives." — Bethany Doerfler, RD

"We are trying to give the right names to the right disorders and give clear diagnostic criteria so that we're helping our patients get a diagnosis, and we're not labeling something incorrectly and sticking someone with a diagnosis that isn't accurate." — Bethany Doerfler, RD

"The diagnosis also means that there are opportunities for medical therapy, cut points for which we decide if medicines or other therapies work or not, and billing codes. If we can't bill insurance companies, patients may not be privy to certain services." — Bethany Doerfler, RD

"Look at the [fortified cereal] labels. You'd be surprised how much they look like a multivitamin, not only for B vitamins but for iron. … It can be a fantastic way to layer in more vitamins without having to think about purchasing a supplement." — Bethany Doerfler, RD

"There's great crossover nutrition between fruits and vegetables. Seeds are great as a fill-in for nuts. There are plenty of other whole grains out there besides wheat. There are lots of good ways for us to get that nutritional balance into your diet." — Bethany Doerfler, RD

Description:

Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED's Health Sciences Advisory Council, interview Dr. Melanie Ruffner, an Attending Physician with the Division of Allergy and Immunology and the Center for Pediatric Eosinophilic Disorders at Children's Hospital of Philadelphia. Dr. Ruffner describes her work in clinic and the paper she co-authored about pediatric and adult eosinophilic esophagitis (EoE). She covers the questions they considered in the paper and the conclusions they reached.

Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.

Key Takeaways:

[:49] Co-host Ryan Piansky introduces the episode, brought to you thanks to the support of Education Partners Bristol Myers Squibb, GSK, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz.

[1:17] Holly introduces today's topic, pediatric and adult eosinophilic esophagitis (EoE), and introduces today's guest, Dr. Melanie Ruffner.

[1:23] Dr. Melanie Ruffner is an attending physician with the Division of Allergy and Immunology in the Center for Pediatric Eosinophilic Disorders at Children's Hospital of Philadelphia. Holly welcomes Dr. Ruffner to Real Talk.

[1:50] As an attending physician in the Center for Pediatric Eosinophilic Disorders at Children's Hospital of Philadelphia, Dr. Ruffner sees patients who have eosinophilic esophagitis and other eosinophilic disorders, including eosinophilic GI tract disorders.

[2:09] Dr. Ruffner also leads a research group that studies how the immune system causes inflammation in response to certain foods, leading to EoE.

[2:20] Inflammation in the esophagus is tied to other diseases like epithelial barrier dysfunction and fibrosis.

[2:28] Our bodies use many different proteins that allow cells to communicate with one another. One type of signaling protein that causes inflammation is called cytokines.

[2:41] Dr. Ruffner's group is interested in how these signaling proteins called cytokines interact with epithelial cells and how that impacts the oral function of the esophagus in patients with EoE.

[3:02] In training, Dr. Ruffner became interested in eosinophilic esophagitis and other non-IgE-mediated food allergies because we don't have a lot of clear treatments or clear mechanisms that cause them.

[3:21] Dr. Ruffner felt there was a lot of work to be done in that area. It was rewarding to be in clinical encounters with those patients. Often, patients had spent a long time trying to find out what was happening and to find a treatment plan that worked for them.

[4:31] Dr. Ruffner's group sees some patients who have eosinophilic gastroenteritis and patients who are referred for hypereosinophilia with impacts of inflammation in other organ systems.

[5:06] Dr. Ruffner co-authored a paper about pediatric and adult EoE published in the Journal of Allergy and Clinical Immunology. It explored if EoE in pediatric patients and adult patients is a spectrum or distinct diseases.

[5:29] EoE is a chronic allergic condition that affects the esophagus. The esophagus carries food from the mouth to the stomach. In people with EoE, the immune system overreacts to foods and causes inflammation in the esophagus.

[5:47] Eosinophils are a type of white blood cell. Eosinophils infiltrate the tissue in the esophagus of people with EoE. Doctors look for eosinophils in the tissue of the esophagus as a sign that inflammation in the esophagus is EoE.

[6:04] The symptoms of EoE can vary in children and adults. That was one of the things the doctors were interested in when they were thinking about this paper. There are no blood or allergy tests that make it easy to diagnose EoE, which requires an endoscopy.

[6:31] An endoscopy is performed by a gastroenterologist. The gastroenterologists look at the appearance of the esophagus and take biopsies.

[6:49] A pathologist counts the eosinophils in the tissue to determine if there are eosinophils present. If there are more than 15 eosinophils in the high-powered field of the microscope and symptoms and clinical conditions are present, EoE is diagnosed.

[7:25] One of the variables Dr. Ruffner considers is that symptoms can be different in children versus adults. In older adolescents and adults, the classic symptom is difficulty swallowing or dysphagia. That is often caused by fibrosis in the esophagus.

[7:54] In younger children this is often not how EoE presents. They may vomit or refuse food. They may experience more weight loss. Symptoms vary over the lifespan. Pediatric EoE symptoms of nausea and abdominal pain can also show up in adults.

[9:54] Atopy refers to allergic conditions. In the paper, a history of atopy means a history of allergic conditions, like atopic dermatitis, IgE-mediated food allergy, allergic rhinitis, or asthma.

[10:37] These disorders tend to cluster together, over time, because they share many common genetic risks. They cluster in families because some of the genetic risks are the same. Not every family member will have the same atopic or allergic conditions.

[11:07] In families, perhaps one person will have atopic dermatitis and allergic rhinitis while another will have atopic dermatitis, allergic rhinitis, asthma, and EoE. They may have inherited different genetics or had different environmental exposures.

[11:50] Ryan says that describes his family. They each have different atopic conditions. Ryan got them all! Dr. Ruffner says it describes her family, as well.

[12:26] Dr. Ruffner says it's understandable for families to stress about atopic conditions. Unfortunately, right now, there's no way to predict who will develop which atopic conditions. It's on the minds of the medical and research communities.

[13:10] IgE is an antibody that binds to food allergens and mediates anaphylaxis, usually within 30 minutes, with hives, vomiting, and difficulty breathing. Not everyone with a diagnosed food allergy will be given an epinephrine auto-injector.

[13:44] IgE-mediated food allergies are influenced by type 2 cytokines. Cytokines are immune system signaling proteins that have been labeled as groups. The group that is involved in allergy most heavily is under the label type 2.

[14:15] These type 2 cytokines are responsible for influencing B cells to make IgE. In the tissue in EoE, we find that there is a large amount of these type 2 cytokines present.

[14:37] This is quite relevant because dupilumab, the monoclonal antibody that has been approved to treat EoE, targets type 2 inflammation by blocking type 2 cytokines.

[16:04] Dr. Ruffner says one of the biggest challenges in the field of EoE is we don't have a way to stratify who should get which treatment for EoE. Patients have to choose between diet and pharmacologic therapy.

[16:48] We don't know enough about the inflammatory profiles to give any patient the specific guided information that one therapy would be better than another.

[17:11] Pediatric and adult patients are given the same treatment options. Some dosing, such as proton pump inhibitors and dupilumab, is weight-based so different doses are needed.

[17:36] Over time, people's needs change. From early school age to when people leave home, they may have very different needs. They may do well on diet therapy when their diet is controlled by parents, but, on their own, that may not be the best option for them.

[18:20] Therapy may change over time to support each patient's individual goals. It can be challenging because therapies are imperfect. Each therapy has a percentage probability of success. Not every therapy is guaranteed to work for every individual.

[19:01] There is some flexibility and possibility of switching between therapies to support people. Ryan shares one of his experiences in changing treatments.

[20:03] Some patients are stable on a therapy for a time but then see symptoms creep back up. Dr. Ruffner strongly suggests they talk to their care team for an endoscopy and biopsy to see if they need to switch therapy and if their diet has changed.

[21:31] In young children, Dr. Ruffner sees a much higher incidence of feeding refusal. The child may have a preferred food or a preferred texture like puree, long past when that would be appropriate for the age.

[22:41] It can be very difficult to move past this learned behavior even if remission is achieved through therapy. The child may need feeding therapy to help with that.

[22:59] Feeding behaviors in older individuals may be much more subtle. Talk about them with your care team. Needing water to eat, cutting food very small, and fearing to eat around people are common eating behaviors to discuss in older patients.

[23:53] These eating behaviors affect people's well-being deeply because they affect how social they feel when they are around people. Ideally, you want to be around people and share in social times.

[24:16] Holly has used these eating behaviors herself and notices them in other people. When adults come to her for therapy, she asks how many times they refill their water when they eat, and if food ever gets stuck. They are surprised that those are symptoms.

[26:01] Dr. Ruffner says it's important to recognize the difference in symptoms in diagnosing EoE. The main risk factor of EoE is fibrosis, over time. The thought is that early in EoE there is an inflammatory phenotype, but later, there is a fibrotic phenotype.

[26:51] The phenotype refers to the presentation or characteristic of disease. What is the appearance at endoscopy? What do we see in the biopsied tissue? Is there fibrosis or not?

[27:15] This is the crux of the paper: Is this on a spectrum, that the inflammation is driving the fibrosis, or are these two different things altogether? There is some evidence to suggest that the inflammation contributes to this fibrosis over time.

[27:40] One thing that is missing is following a group of patients from the start and having that evidence. There is mechanistic evidence from studies to show that inflammation can contribute to fibrosis. That was one of the discussions in the paper.

[28:29] In endoscopies, something that can be seen with fibrosis or fibrostenotic features is more of an appearance of rings and narrowing of the esophagus. A proportion of patients with strictures or narrowing need to have them dilated.

[29:11] For patients who have dilation, it can help with symptoms significantly. When pathologists look at the tissue with fibrosis, they can see changes in the protein structure. There is more collagen and other changes in the tissue, causing fibrosis.

[30:03] Some patients use adaptive eating behaviors to adapt to significant changes in their esophagus and go for many years without being diagnosed until they present with an impaction when food becomes stuck in their esophagus.

[30:46] This makes EoE a challenging disorder for many because it can be very difficult to diagnose. The journey to a diagnosis is very individual. As a group, adults are much more likely to have fibrosis, leading to dysphagia, strictures, or impaction.

[31:25] Statistically, across all patients, you see fibrosis more in adults than in children.

[32:42] In the paper, Th1 cells are mentioned. Th1 is an immune system term referring to a cell that produces interferon-gamma. Studies show there may be differences in interferon signaling in different age groups but it needs to be studied further.

[33:57] Dr. Ruffner's team had looked at a small group and saw that interferon signaling seemed to be relatively similar between children and adults. Both CD4 and CD8 T cells (types of immune system cells) are potentially producing interferon in the esophagus.

[34:32] More study needs to be done around those immune system cells and their potential significance in EoE, if any.

[35:33] The paper suggests that EoE in children and adults is essentially a spectrum of the same disorder rather than distinct diseases.

[35:42] Aspects of immunology, responses to different treatments across children and adults, the similar responses to diet and different medications, and over time in the same individuals, indicate these are changes and complications over time.

[36:41] Dr. Ruffner suggests that medical researchers need to understand which patients are at the highest risk of complications and work to identify the best treatments to prevent those.

[37:14] Dr. Ruffner is thinking about the response to proton pump inhibitor therapy. One of the things she is looking at is whether or not proton pump inhibitors affect how eosinophils migrate into the tissue.

[37:33] They are finding that it seems that PPIs can decrease the degree of migration of eosinophils into the tissue. They are very interested in looking at that. Ryan says when Dr. Ruffner gets that paper published, she'll have to come back on the show!

[38:06] Ryan thanks Dr. Ruffner. For our listeners who would like to learn more about eosinophilic disorders, including EoE, please visit http://apfed.org and check out the links in the show notes.

[38:15] If you're looking to find a specialist who treats eosinophilic disorders, we encourage you to use APFED's Specialist Finder at http://apfed.org/specialist.

[38:24] If you'd like to connect with others impacted by eosinophilic diseases, please join APFED's online community on the Inspire Network at http://apfed.org/Connections/.

[38:33] Ryan thanks Dr. Ruffner for participating in the podcast episode. Holly also thanks APFED's Education Partners Bristol Myers Squibb, GSK, Sanofi, Regeneron, and Takeda for supporting this episode.

Mentioned in This Episode:

Dr. Melanie Ruffner, MD, PhD, Attending Physician with the Division of Allergy and Immunology and the Center for Pediatric Eosinophilic Disorders at Children's Hospital of Philadelphia

"Pediatric and adult EoE: A spectrum or distinct diseases?" by Stanislaw J. Gabryszewski, Melanie A. Ruffner, and Jonathan M. Spergel

APFED on YouTube, Twitter, Facebook, Pinterest, Instagram

Real Talk: Eosinophilic Diseases Podcast

https://apfed.org/specialist

https://apfed.org/connections

Education Partners: This episode of APFED's podcast is brought to you thanks to the support of Bristol Myers Squibb, GSK, Sanofi, Regeneron, and Takeda.

Tweetables:

"EoE is a chronic allergic condition that affects the esophagus. The esophagus carries food from the mouth to the stomach. In people with EoE, the immune system overreacts to food allergens and causes inflammation in the esophagus." — Dr. Melanie Ruffner

"In EoE, there are no blood or allergy tests that make it easy to diagnose EoE without an endoscopy." — Dr. Melanie Ruffner

"Is EoE on a spectrum, that the inflammation is driving the fibrosis, or are these two different things altogether? There is some evidence to suggest that the inflammation contributes to fibrosis over time." — Dr. Melanie Ruffner

"When pathologists look at the tissue with fibrosis, they can see the changes in the protein structure." — Dr. Melanie Ruffner

"There are some folks who have adapted their eating behavior quite significantly and may have quite a number of chronic changes in their esophagus that they have adapted around, and they go for many years without being diagnosed." — Dr. Melanie Ruffner

Description:

Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED's Health Sciences Advisory Council, interview Dr. John Accarino, an allergist and immunologist at Massachusetts General Hospital and Mass General for Children, on the topic of immunology support for eosinophilic esophagitis (EoE). Dr. Accarino shares his experiences as a person living with food allergies, allergic asthma, peanut allergy, and eosinophilic esophagitis. He tells how his experiences help him in his work with patients. Dr. Accarino shares some education on a variety of allergy mechanisms and the treatments that mitigate them.

Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.

Key Takeaways:

[:49] Co-host Ryan Piansky introduces the episode, brought to you thanks to the support of Education Partners Bristol Myers Squibb, GSK, Sanofi, and Regeneron. Ryan introduces co-host Holly Knotowicz.

[1:14] Holly introduces today's topic, immunology support for eosinophilic esophagitis (EoE), and introduces today's guest, Dr. John Accarino, an allergist and immunologist at Massachusetts General Hospital. Holly welcomes Dr. Accarino to Real Talk.

[1:49] Holly notes that Dr. Accarino is her allergist and immunologist.

[2:03] Dr. Accarino works at Massachusetts General Hospital and Mass General for Children. Allergy and Immunology is a field where he can see pediatrics and adults. Originally trained in pediatrics, now Dr. Accarino sees patients of all ages.

[2:23] Dr. Accarino grew up with allergies. He has experienced food allergies since he was young, along with allergic asthma, and some eczema, which he grew out of. Later in life, he was diagnosed with eosinophilic esophagitis. He talks with his patients about his experiences.

[2:47] Dr. Accarino also does research on drug allergies in the context of certain drug interactions that involve eosinophils.

[3:06] When Holly was referred to Dr. Accarino, it was for multiple sclerosis (MS). He told her, "It looks like you have EoE. I have EoE." It was a huge relief to Holly not to have to explain EoE to her doctor.

[3:41] Some patients start to explain their EoE to Dr. Accarino, and he assures them he understands where they're coming from. Sometimes, he has to be careful not to think everyone has his symptoms, as there is a large spectrum of presentations.

[4:26] Dr. Accarino wasn't diagnosed with EoE until he was in his allergy fellowship, after he suspected it when he had a food impaction at a steakhouse at a graduation party from his pediatric residency. He tried to manage the EoE with lifestyle changes.

[5:39] Dr. Accarino didn't often go to see a doctor during residency, but he realized it was probably a good time to get an endoscopy.

[5:52] Holly shares how she was also diagnosed as a clinical fellow. She was subbing for someone on the GEDP team at Children's Hospital in Colorado. Listening to all the patients, she realized, "This sounds a little bit like me … What is going on?"

[6:23] Even with his medical background, it took Dr. Accarino some time to decide to get the endoscopy and biopsies. You or your doctor have to have a high level of suspicion to realize this isn't just reflux. Food doesn't get stuck in every person's throat.

[7:01] Thinking back, Dr. Accarino remembers an instance as a child when a dry muffin got stuck in his throat. He stayed calm and waited for it to pass. He thought it was normal.

[7:39] He drank a lot of water and chewed his food a lot. Those are markers of potential esophageal inflammation.

[8:20] Different groups have different management strategies for EoE. Dietary management, topical steroids, biologics. A subgroup of people with EoE are responsive to proton pump inhibitors (PPIs). Finding the best management strategy is a work in progress.

[8:53] With pediatric patients, the parents control the diet, and the children eat what is prepared. He notes that with adult patients, sometimes they let foods slip through.

[9:10] If you want to do a single-food elimination diet with dairy, there's a lot of dairy in the American diet. Dr. Accarino tried eliminating dairy and wheat, but he still had persistent eosinophils with dietary elimination.

[9:24] Dr. Accarino then tried PPIs. To know if you have PPI-responsive EoE, you might do twice-daily omeprazole at a significant dose. Have the endoscopy after a few weeks pass and see if the eosinophils are still present in the biopsy.

[9:59] Dr. Accarino did that recently and still has the eosinophils. He plans to talk to his gastroenterologist about considering dupilumab, but he feels that he can mitigate his subjective day-to-day experience of symptoms with dietary elimination and PPIs.

[10:24] If you still have the presence of eosinophils on biopsy, there's still inflammation happening. In the long term, you still have to worry about fibrosis and narrowing.

[10:34] The last treatment Dr. Accarino tried was as a research participant in a study for dissolvable fluticasone. He received either the medication or a placebo; he doesn't know which.

[11:01] To stay in the study, he had to journal and report his symptoms regularly. He didn't have enough symptoms to stay in the study. They were looking for a baseline to see how it changed with either the placebo or the medication.

[11:20] In research, you have to have a baseline to start, and then you want to see improvement, plus or minus. With EoE, it's difficult. You have the biopsy and eosinophils, but there's a large spectrum of symptoms that people may experience.

[12:40] Holly appreciates Dr. Accarino's unique perspective as a doctor with EoE who has experienced various treatments and diets. He understands the concerns of his patients.

[12:43] Dr. Accarino says even taking a twice-daily PPI or other medication is difficult for a lot of people, and that's the most simple of these therapies.

[13:06] Dr. Accarino wants to validate everyone's experience in terms of how difficult it is to treat this disorder, how it may present in different ways, and how there may be a delay in diagnosis.

[13:16] This isn't IgE-mediated immediate food allergy, where you eat a food and may have swelling within minutes; you may have flushing or hives. That's very clear. With EoE, it's a different mechanism; in many cases, there is a delay.

[14:37] Allergy, in general, is under the purview of clinical immunology. Dr. Accarino is allergic to peanuts and has an IgE-mediated immediate reaction to them. If he eats a peanut, he has symptoms within minutes. He could have anaphylaxis. As a result, he carries an epinephrine auto-injector.

[15:01] If Dr. Accarino has a skin test, it will be positive for peanut. He has IgE antibodies to peanuts. He also has oral allergy syndrome where the body mistakes certain fruits, vegetables, or nuts with certain tree pollens or grass pollens.

[15:23] Oral allergy syndrome is usually a lower-risk condition where it's a less-stable protein that once cooked might not produce any symptoms. If it's raw when you consume it, you may have oral itching, a bit of throat discomfort, or tongue itching.

[15:54] Your stomach acid breaks it down so it doesn't get into your bloodstream and you shouldn't have a systemic reaction.

[16:01] If Dr. Accarino eats a peanut, his stomach acid doesn't break down the high-risk, stable peanut protein, it gets into his bloodstream, and he can have a systemic anaphylactic reaction.

[16:20] Chronic EoE symptoms can present with something like a food impaction, or bad reflux or belly pain, and nausea. The reaction may not be immediate. It may be progressive over days or weeks.

[16:38] FIRE is an interesting condition that takes some time to narrow down. It's an immediate response of the esophagus, but we don't think it's histamine-mediated.

[16:56] We don't know, exactly, the mechanism but it's in people with eosinophilic esophagitis. They feel differently, and there would be different specific food triggers.

[17:11] It took some time to figure out what was going on. Dr. Accarino felt like he had a lump in his throat, then a lump in his chest, nausea, and belly pain. It felt like a slow progression of EoE symptoms, and it was from specific food triggers, in his case.

[17:30] In some of the FIRE literature, they looked at banana and avocado. For Dr. Accarino, it took a couple of exposures to protein bars and milk protein whey isolate, specific to protein bars he had multiple times, until he figured out that was the trigger.

[17:50] Another protein whey isolate that Dr. Accarino scooped as a powder and made into a shake also led to FIRE.

[17:55] It took that event for Dr. Accarino to figure out it wasn't just a flareup of EoE or reflux but some trigger that caused this response that wasn't anaphylaxis but may be due to the recruitment of eosinophils or some immediate process not well understood.

[18:18] FIRE is going to be very hard to research. How would we figure this out? Would we bring someone in and do an endoscopy immediately and see what happens? There's a lot of descriptive data and case series.

[18:32] Dr. Accarino has had experiences when he knew it wasn't an immediate anaphylactic reaction, oral allergy, or reflux. He asked what else it could be in the context of EoE. When he looked at different case series, that's the presentation he had.

[19:17] Dr. Accarino acknowledges that having personal experience with FIRE, oral allergies, and IgE-mediated allergies, on top of EoE, has influenced his work as a medical professional. He can share anecdotes with patients as he explains the available testing.

[19:39] Dr. Accarino says a lot of immunology and allergy is explaining the diagnostic tools and management strategies we have and what we think is going on.

[19:50] The immune system is infinitely complex, and a lot of the practice is making a digestible analogy, not just in the context of allergic conditions but also everything with the immune system. There are so many cells doing so many different things.

[20:04] Dr. Accarino explains false positives in testing. He has positive scratch tests for peanuts, cashews, and almonds, which shows he has IgE for each of them. He is allergic to peanuts, but he can eat cashews and almonds. Those are false positives.

[20:56] When a scratch test is negative for immediate food allergy, it's a powerful predictive tool. But you may get false positives. How positive is it? There might be room for more discussion.

[21:10] There may be more hesitation for people who do large panels of food testing without any history of reacting to any foods.

[21:31] Some people have EoE triggered by milk or wheat but have negative skin tests. That doesn't mean they aren't triggered by these foods. The skin test is an IgE histamine mast cell mechanism, not for eosinophils, which are other immune cells.

[21:58] We go down these steps of thinking about diagnostic triggers and eventually treatment for those immediate symptoms mentioned for EoE.

[22:09] Dr. Accarino doesn't expect FIRE to be responsive to epinephrine. He doesn't have to stabilize the mast cells. It's a chronic disease that's flaring up. You treat it with a chronic type of treatment.

[24:10] Dr. Accarino says that for a doctor, immunology is rewarding, interesting, and complex, but it's intimidating until you get your foothold and see patients and clinical experiences.

[25:14] A lot of medical students and residents are a little fearful of immunology. They might not think about it too much. Dr. Accarino loves to talk about it and think about it. He can't think of anything more complex in terms of systems within our body.

[25:37] Ryan comments on his experiences with IgE-mediated food allergies, some environmental allergies that he has no idea how they work, and EoE, which he believes he has a good grasp on.

[25:55] Ryan imagines that having a physician with a good understanding of the immune system and also personal experience would be helpful for a patient with multiple allergic conditions.

[26:13] Dr. Accarino sees a large overlap of seasonal or year-round environmental allergies and EoE. There are some studies that show that endoscopies on patients with EoE may change at different times of the year if they have underlying seasonal allergies.

[26:33] Some people who have food allergies also have EoE or other eosinophilic disorders. Some discussions with them may be about blood tests that detect eosinophils in the bloodstream versus biopsies of the esophagus, stomach, or colon.

[27:15] It's thinking about what tests are available, what they tell us, and how to use them to predict the next steps, things like dietary changes or for immediate food allergy, considering challenges versus full avoidance. Each test has its pluses and minuses.

[27:35] People like a clear test, and they like an easy fix, but sometimes there's a lot of nuanced conversation of shared decision-making and trying things in a supervised setting.

[27:57] Holly speaks as a patient of the investigative testing Dr. Acarino is doing with her immune system trying to figure it out along with her MS and EoE.

[28:14] Dr. Accarino says the words immune system, immunity, and inflammation are used a lot in talking about foods. Dr. Accarino uses the framework of the immune system trying to help you.

[28:42] Sometimes, instead of making helpful antibodies to things like vaccines or viruses, that give you protection, the immune system makes antibodies that attack a certain organ or your joints.

[29:02] Dr. Accarino thinks of treatments that suppress the immune system in certain ways. Some treatments cool down the populations of many different immune cells. Oral steroids and prednisone are used for many conditions for autoimmune flares.

[29:29] Oral steroids, in the long term, may lead to weight gain, bone density changes, and diabetes. The big push for many diseases is toward non-steroidal biologics to target specific cells that cause disease.

[29:59] For Crohn's disease, a specific monoclonal antibody is used to target TNF-alpha molecules and blocks that inflammation pathway.

[30:14] For EoE, dupilumab, a specifically designed antibody, blocks a specific receptor in a specific pathway so the immune system doesn't have to be shut down and the patient doesn't have the side effects of steroids. It's a targeted therapy.

[30:32] What you see in commercials for injectable medications are large, designed antibodies that, if you took them in a pill form, your stomach acid would break down and digest. So they are injections and infusions that go directly into the bloodstream.

[31:22] Medications that end in -mab are monoclonal antibodies. They are very large molecules that would not be stable in stomach acid.

[32:09] Dr. Accarino talks of eosinophil normal function and aberrant function. IgE-mediated reactions are usually related to mast cells, a type of immune cell that shouldn't be in the bloodstream.

[32:54] Dr. Accarino can do a CBC with differential to see the number of white blood cells and the number of red blood cells. The differential of white blood cells will include neutrophils, lymphocytes, and eosinophils. It shouldn't show mast cells.

[33:19] If you have mast cells in your bloodstream, that's mastocytosis, a different problem. Mast cells live in your skin, in your gut, and around your blood vessels. They're full of granules like histamine and tryptase.

[33:38] Dr. Accarino explains how mast cells release their contents and how he would treat the resulting swelling or itch with an antihistamine or epinephrine. Epinephrine treats systemic reactions and stabilizes the mast cells.

[34:16] Mast cells have many receptors and may be triggered by many things other than IgE. This is a conversation Dr. Accarino has with patients who have chronic hives unrelated to any foods.

[34:29] Some people get hives from non-steroidal anti-inflammatory drugs NSAIDs. Some get hives from vancomycin. Some get hives when the temperature changes, from tight clothing, or from IV contrast. It's not an IgE-mediated mechanism, but it's still mast cells being degranulated.

[35:45] Dr. Accarino says people see hives and they think allergy. But, like EoE, it doesn't involve histamine. There can be hives that aren't related to allergies. This can be idiopathic urticaria or spontaneous urticaria.

[36:04] Sometimes, when switching from a day shift to a night shift, hormonal changes will trigger hives. Sometimes, the stress of having a family member in the hospital will cause hives. An accumulation of triggers can lead to mast cell degranulation.

[36:38] There are many ways that allergy can have different mechanisms and treatments, with different cells involved. There are different molecules that cause symptoms and manifestations.

[36:50] Navigating that and understanding what might be going on can give people a sense of reassurance. The biggest fear is a life-threatening allergic reaction. People will read about fatal anaphylaxis and wonder if it will happen to them with their condition.

[37:16] Sometimes, thinking of the cells involved and the pathways may give a level of reassurance that this may not be the same thing that they read about.

[37:28] Ryan thanks Dr. Accarino for joining us today.

[37:37] Dr. Accarino says it was nice to reflect on things and to go through different scenarios and experiences he has gone through. It was nice to have the opportunity to share them with Ryan, Holly, and all the listeners.

[37:57] For our listeners who would like to learn more about eosinophilic disorders, including EoE, please visit http://apfed.org and check out the links in the show notes.

[38:06] If you're looking to find a specialist who treats eosinophilic disorders, we encourage you to use APFED's Specialist Finder at http://apfed.org/specialist.

[38:15] If you'd like to connect with others impacted by eosinophilic diseases, please join APFED's online community on the Inspire Network at http://apfed.org/Connections/.

[38:25] Ryan thanks Dr. Accarino for joining us today for this fun conversation. Holly also thanks APFED's Education Partners Bristol Myers Squibb, GSK, Sanofi, and Regeneron for supporting this episode.

Mentioned in This Episode:

Dr. John Accarino, MD, Allergist and Immunologist at Massachusetts General Hospital and Mass General for Children

Episode 034: Food-Induced Response and Eosinophilic Esophagitis

APFED on YouTube, Twitter, Facebook, Pinterest, Instagram

Real Talk: Eosinophilic Diseases Podcast

https://apfed.org/specialist

https://apfed.org/connections

Education Partners: This episode of APFED's podcast is brought to you thanks to the support of Bristol Myers Squibb, GSK, Sanofi, and Regeneron.

Tweetables:

"Allergy and immunology is a field where I can see pediatrics and adults. I was originally trained in pediatrics, but now I see all ages, from infants up until older adults." — Dr. John Accarino

"Part of the conversation sometimes is trying not to overly bias myself, where I say, 'Oh, this is my experience.' … Like many diseases, there's a large spectrum of presentations, … different symptoms that people have." — Dr. John Accarino

"We don't think [Food-Induced Response in Eosinophilic Esophagitis is] histamine-mediated. We don't know exactly the mechanism, but it's in people with eosinophilic esophagitis. They feel differently, and there would be different specific food triggers. It took some time to figure out that was going on." — Dr. John Accarino

"When a scratch test is negative for immediate food allergy, it's a very powerful predictive tool. But there are times that you may get false positives. How positive is it? There might be room for more discussion." — Dr. John Accarino

"There are a lot of ways that allergy can have different mechanisms and different treatments, with different cells involved." — Dr. John Accarino

Description:

Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED's Health Sciences Advisory Council, interview Dr. Wayne Shreffler, Chief of Pediatric Allergy and Immunology and Co-Director of The Food Allergy Center at Massachusetts General Hospital. Dr. Shreffler is also an investigator at The Center for Immunology and Inflammatory Disease and The Food Allergy Science Initiative. His research is focused on understanding how adaptive immunity to dietary antigens is both naturally regulated and modulated by therapy in the context of food allergy. This interview covers the results of a research paper on The Intersection of Food Allergy and Eosinophilic Esophagitis, co-authored by Dr. Shreffler.

Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.

Key Takeaways:

[:50] Co-host Ryan Piansky introduces the episode, brought to you thanks to the support of Education Partners Bristol Myers Squibb, GSK, Sanofi, and Regeneron. Ryan introduces co-host, Holly Knotowicz.

[1:15] Holly introduces today's topic, the intersection of food allergy and eosinophilic esophagitis.

[1:26] Holly introduces today's guest, Dr. Wayne Shreffler, Chief of Pediatric Allergy and Immunology and Co-Director of The Food Allergy Center at Massachusetts General Hospital and an investigator at The Center for Immunology and Inflammatory Disease and The Food Allergy Science Initiative.

[1:43] Dr. Shreffler's research is focused on understanding how adaptive immunity to dietary antigens is both naturally regulated and modulated by therapy in the context of food allergy.

[1:54] Holly welcomes Dr. Shreffler to Real Talk. When Holly moved to Maine, she sent her patients to Dr. Shreffler at Mass General.

[2:25] Dr. Shreffler trained in New York on a Ph.D. track. He was interested in parasitic diseases and the Th2 immune response. Jane Curtis, a program director at Albert Einstein College of Medicine, encouraged him to consider MD/PhD programs. He did.

[3:31] Jane Curtis connected him to Hugh Sampson, who was working with others to help understand the clinical prevalence of food allergy and allergens.

[3:51] As a pediatric resident, Dr. Shreffler had seen the burden of allergic disease, caring for kids in the Bronx with asthma. His interest in Th2 immunity, the clear and compelling unmet clinical need, and the problem of food allergy guided his career.

[4:31] Dr. Shreffler's wife has food allergies and they were concerned for their children. Fortunately, neither of them developed food allergies.

[5:21] Dr. Shreffler thinks the food allergy field has a lot of people who gravitate toward it for personal reasons.

[5:53] Food allergy is an adverse response to food that is immune-mediated. There is still uncertainty about this but Dr. Shreffler believes that a large percentage of patients with EoE have some triggers that are food antigens.

[6:27] The broad definition of food allergy would include things like food protein-induced enterocolitis syndrome (FPIES).

[6:47] The way we use the term food allergy in the clinic, there are two forms: IgE-mediated allergies and non-IgE-mediated allergies, including EoE.

[7:40] Some patients have food-triggered eczema, some have FPIES.

[8:04] In 2024, Dr. Shreffler and Dr. Caitlin Burk released a paper that looked at the triggers of EoE, particularly the intersection of IgE-mediated food allergy and EoE.

[8:41] Dr. Caitlin Burk joined the group as they were publishing papers on IG food allergy and EoE. It was a moment where things unexpectedly came together.

[9:17] Adaptive immunity to food proteins comes from antibodies that cause milk allergy, egg allergy, peanut allergy, or multiple allergies. The IgE has specificity.

[9:40] T cells also are specific to proteins. They express a host of receptors that recognize almost anything the immune system might encounter. They have a long memory like B-cells.

[10:09] The overlap in these two threads of research was regarding a population of T cells that are important for mediating chronic inflammation at epithelial sites, including the gut.

[10:36] These T cells have been described in the airways in asthma, in the skin in eczema, and the GI tract. Researchers years ago had also described them as being associated with IgE food allergy. People with IgE food allergies avoid allergens.

[11:13] T cells, being associated with chronic allergic inflammation, now being associated with food allergies which are not having chronic exposures to the allergen, was interesting and surprising.

[11:30] Dr. Shreffler and his group found the T cell subset in patients who don't do well with Oral Immunotherapy (OIT) and patients who have EoE with immediate symptoms.

[12:01] Dr. Shreffler notes differences. There are immediate symptoms of IgE food allergy. There is a subset of patients with EoE who have immediate symptoms that are not fully understood. Maybe IgE plays a role there.

[12:28] There are different mechanisms for how symptoms are caused and so different ways of making a diagnosis. A food allergy with an IgE antibody can be measured through skin tests and blood tests. This can help identify which foods are the trigger.

[12:57] This common T cell subset that we see in EoE and food allergy, helps to explain why IgE alone is not always a very specific marker for identifying people who will have immediate reactions when they're exposed to the food.

[13:17] For patients who react at low levels, it's not just that they have more or better IgE but they also have an expansion of these T cells that are common between EoE and other chronic forms of allergy and IgE food allergy.

[13:41] There's a lot to learn that might be relevant for patients about this T cell subset.

[14:23] These T cells are a specific subset of the group of Th2 T cells, which are a subset of all CD4 T cells. Some CD4 T cells are important for responding to viruses and tumors. Others are important for responding to outside allergens.

[15:01] In an allergy or a parasite infection, Th2 T cells are important. There is a subset of T cells that is driven by repetitive and chronic exposure to the triggering protein, antigen, or allergen.

[15:47] Most antigens are proteins that trigger an immune response. An antigen that elicits an allergic response is an allergen.

[16:30] A food trigger is a protein antigen that is an allergen. In IgE, food allergies, milk, and eggs are prevalent triggers early in life. For reasons not well understood, a lot of people outgrow them. In older patients, peanut and tree nut allergies are prevalent.

[17:01] In EoE, milk is one of the most common dietary triggers into adulthood. Some patients with IgE allergy to milk can tolerate it if it's well cooked. Patients with EoE are less likely to be able to get away with regular and ongoing exposure to milk protein.

[17:54] Milk, eggs, and nuts are common triggers in both conditions. There can also be rare food allergy triggers. That's part of the early evidence that the adaptive immune response was likely to be involved. It can be so specific for some people to rare things.

[18:20] Hallmarks of something being immune-mediated are that it is reproducibly demonstrable as a trigger. It's going to be long-lived. It's going to be generally relatively small amounts. The immune system is good at detecting small exposures.

[19:07] EoE is tricky because there's not that clear and easy temporal association between an offending allergen exposure for most people and their symptoms. People don't associate the symptoms with the triggers.

[20:14] A history of having blood in the stools can be milk-allergen-driven and was associated with a diagnosis of EoE in those kids when they're older.

[20:26] There are a lot of commonalities in the allergens but it's not always obvious clinically.

[22:40] A challenge in diagnosing EoE is that providers have to be on guard against their biases. They have to give a patient good advice. In EoE there is no test to identify triggers, except rigorous introduction, elimination, reintroduction, and endoscopies.

[24:18] For some of Dr, Shreffler's patients, it becomes less important to know their dietary triggers. They gravitate toward an approved form of treatment that may, if successful, allow them to have a more normal diet because of effective medication.

[24:50] Dr. Shreffler thinks there are other triggers, including pollens. There is evidence of seasonality of active EoE in patients shown to have allergic sensitization to pollens. That's indirect evidence. If the body is making IgE, it's likely making other responses.

[25:32] There are questions about how large the population of patients is who have EoE that may be more intrinsically than extrinsically driven because of genetic variations.

[25:54] Dr. Shreffler believes that EoE in some patients is allergen-driven and in some patients EoE is food-driven. Food is a trigger for the majority of pediatric patients and a large percentage of adult patients but not necessarily the exclusive trigger.

[27:04] If a patient is motivated to learn what dietary triggers may be at play, Dr. Shreffler often makes assessments outside of pollen season for allergens to which the patient has demonstrated positivity.

[28:09] Looking at the epidemiology, both EoE and food allergy are atopic disorders. You see an increased prevalence of asthma, hay fever, eczema, and even allergic proctocolitis in infancy. You see an enrichment of one disorder to another.

[28:29] The overlap of food allergy to EoE is stronger than you might expect. About 30 to 40% of patients with EoE will also have IgE food allergy. A higher rate will have IgE positivity, whether or not that food is a trigger of immediate symptoms.

[28:48] Patients with food allergies are about four times more likely to have EoE than the general population. That's a stronger association than the risk of eczema or other atopic conditions to EoE.

[30:09] There are differences between IgE food allergy and EoE. The presence of IgE gives a useful tool for identifying the food trigger in food allergy, but not in EoE. Identifying rare triggers in EoE patients is done by clinical observation.

[31:46] Epinephrine and antihistamines are not useful in treating EoE. Blocking IgE with Omalizumab has not been effective in trials in treating EoE. PPIs, topical steroids, and dupilumab are helpful for many EoE patients.

[32:38] Dupilumab has been evaluated a bit in food allergy in combination with OIT, and there was no statistically significant benefit from dupilumab in food allergy.

[33:25] A group in Pennsylvania has been evaluating epicutaneous immunotherapy as a modality to treat EoE. It's also being evaluated for IgE food allergy. Dr. Shreffler thinks it's something to keep an eye on.

[33:40] The oral route for immunotherapy can drive EoE for patients. As they become less sensitive from an immediate reactivity viewpoint, a significant percentage of patients develop GI symptoms. This has also been observed with sublingual therapy.

[34:14] Iatrogenic EoE, caused by the treatment, may resolve on the cessation of the immunotherapy treatment.

[36:25] Dr. Shreffler says in some cases, the shared decision is a decision where he has a strong evidence-based opinion. In some cases, there's a lot more room for a range of clinical decisions that could be equally supported by what we know right now.

[36:57] We've said that EoE is a contraindication for OIT. There is a shift happening. Dr. Shreffler sits with families and has a conversation about restricting diet or trying chronic therapy and keeping an ad-lib diet.

[37:38] What about doing the same thing by treating the immediate-type food allergy with chronic allergen exposure and then ameliorating the effects of EoE if it emerges, with another therapy? A hundred providers would have a diversity of responses.

[38:19] When there is a history of EoE in a family, Dr. Shreffler advocates for getting a baseline scope. It becomes an important "ground zero."

[38:28] The goal is to have less invasive ways to monitor these conditions.

[39:32] Chronic inflammation, which is the hallmark of EoE, is well-targeted by therapies like PPIs and steroids. Steroids don't help with IgE-related food allergies. They're not effective at blocking the IgE-driven immediate response.

[41:13] Until recently, IgE food allergy has only been managed with avoidance. We have some other tools now. Xolair is not effective in EoE but is effective in two-thirds to three-quarters of patients with immediate-type food allergies for preventing anaphylaxis.

[41:45] Dr. Shreffler refers to an upcoming study on the effectiveness of Xolair in treating people with food allergies. Those who were able to tolerate a minimum amount were allowed to begin consuming allergen. We'll get insight into how those patients did.

[43:08] Food-induced immediate response of the esophagus (FIRE) is immediate discomfort with exposure to some allergens. Dr. Shreffler explains it. Data supports that these patients are experiencing an IgE-mediated but local response to those triggers.

[44:59] If FIRE is IgE-mediated, it may be that Xolair would help suppress it in these patients. It's worth looking at Xolair for this subset of EoE patients.

[45:20] Ryan invites any listeners who want to learn more about FIRE to check out episode #34 with Dr. Nirmala Gonsalvez.

[45:37] In the paper, Dr. Shreffler wrote about what he hopes will be the practical usefulness of the finding, the intersection between IgE food allergy and EoE.

[45:56] A subset of Th2 T cells express a protein called GPR15. It appears to be a marker for the subset of cells that are playing a role in the EoE.

[46:36] Caitlin Burk's work now is looking at their activation status in active disease and post-diet elimination and remission. She is developing a data set that is leading us toward the possibility of focusing on that cell subset and techniques to adopt in clinics.

[47:12] She is also working out more advanced techniques to look at the receptors. Dr. David Hill at CHOP is working on similar research. This research has the potential to lead to the development of better tests for EoE.

[47:44] Holly tells Dr. Shreffler this has been such an informative episode with so many tidbits of things to help patients advocate for themselves. Holly thanks him for sharing all of that.

[48:12] Dr. Shreffler is trying to see what can be utilized from their research to make non-invasive tests to identify food allergen triggers for patients so they don't have to go through so many endoscopies. He sees it as a huge unmet need.

[48:31] Ryan thanks Dr. Shreffler for joining us. For our listeners who would like to learn more about eosinophilic disorders, including EoE, please visit http://apfed.org and check out the links in the show notes.

[48:41] If you're looking to find a specialist who treats eosinophilic disorders, we encourage you to use APFED's Specialist Finder at http://apfed.org/specialist.

[48:50] If you'd like to connect with others impacted by eosinophilic diseases, please join APFED's online community on the Inspire Network at http://apfed.org/Connections/.

[49:00] Ryan thanks Dr. Shreffler for joining us today for this interesting conversation. Holly also thanks APFED's Education Partners Bristol Myers Squibb, GSK, Sanofi, and Regeneron for supporting this episode.

Mentioned in This Episode:

Dr. Wayne Shreffler, MD, Ph.D., Chief of Pediatric Allergy and Immunology and Co-Director of The Food Allergy Center at Massachusetts General Hospital

"Triggers for eosinophilic esophagitis (EoE): The intersection of food allergy and EoE"

Dr. Caitlin Burk

Dr. David A. Hill

APFED on YouTube, Twitter, Facebook, Pinterest, Instagram

Real Talk: Eosinophilic Diseases Podcast

https://apfed.org/specialist

https://apfed.org/connections

Education Partners: This episode of APFED's podcast is brought to you thanks to the support of Bristol Myers Squibb, GSK, Sanofi, and Regeneron.

Tweetables:

"This fascinating problem of food allergy: why does the immune system do that for some people — recognize what should be nutritive and innocuous sources of energy as an immunological trigger? " — Dr. Wayne Shreffler

"A food allergy; because there is this IgE antibody, we can do skin tests. We can measure that in the blood. It's a useful marker for helping to identify which foods are the trigger." — Dr. Wayne Shreffler

"EoE is tricky because there's not that clear and easy temporal association between an offending allergen exposure for most people and their symptoms. People don't associate the symptoms with the triggers." — Dr. Wayne Shreffler

"Everything is shared decision-making. In some cases, it's a shared decision where I have a strong evidence-based opinion. In some cases, there's a lot more room for a range of clinical decisions that could be equally justified." — Dr. Wayne Shreffler

"Steroids don't help with IgE-related food allergy. They're not effective at blocking that IgE-driven immediate response." — Dr. Wayne Shreffler

"I'm trying to see what we can utilize from our research to make non-invasive tests to identify food allergen triggers for patients so they don't have to go through so many endoscopies. I think that's a huge unmet need." — Dr. Wayne Shreffler

Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED's Health Sciences Advisory Council, interview Dr. Margaret Collins, a professor of pathology at the University of Cincinnati and a staff pathologist at Cincinnati Children's Hospital Medical Center. Dr. Collins was a member of the task force that produced the Guidelines on Childhood EGIDs Beyond EoE. In this interview, Dr. Collins discusses the guidelines and how they were created and shares some of the results, including an algorithm for diagnosing non-EoE EGIDs. She shares why she specialized in EGIDs and what her hopes are for the future development of the guidelines.

Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.

Key Takeaways:

[:49] Ryan Piansky introduces the episode, brought to you thanks to the support of Education Partners Bristol Myers Squibb, GSK, Sanofi, and Regeneron, and co-host, Holly Knotowicz.

[1:13] Holly introduces today's topic, guidelines for childhood eosinophilic gastrointestinal disorders (EGIDs) beyond eosinophilic esophagitis (EoE).

[1:27] Holly introduces today's guest, Dr. Margaret Collins, a professor of pathology at the University of Cincinnati and a staff pathologist at Cincinnati Children's Hospital Medical Center.

[1:38] Dr. Collins specializes in the pathology of pediatric gastrointestinal disease, especially EGIDs, and is a central pathology reviewer for the Consortium of Eosinophilic Gastrointestinal Researchers (CEGIR), as well as a member of APFED's Health Sciences Advisory Council.

[2:11] As a pathologist, Dr. Collins examines biopsies microscopically. For EGIDs, she determines the peak count of eosinophils per high-power field, or reports the numbers of eosinophils in multiple high-power fields, and analyzes the tissue for additional abnormalities.

[2:33] Dr. Collins then issues a report that becomes part of the patient's medical record and is provided to the patient's doctor.

[2:41] The biopsies Dr. Collins examines may be the first biopsies for a diagnosis, or follow-up biopsies to determine response to therapy, or as part of ongoing monitoring to determine if inflammation has returned even if the patient has no symptoms.

[3:07] Dr. Collins was inspired to specialize in EGIDs after speaking with patients with EGIDs. She used to give tours of the pathology lab at Cincinnati Children's Hospital. She met affected children and their caregivers. Their courage and gratitude moved her.

[3:43] Ryan mentions the wonderful patients and their families in the APFED community. Holly says that as a patient, it's fascinating to meet a pathologist. Pathologists are generally behind the scenes.

[4:42] Dr. Collins specializes in GI pathology, including eosinophilic-related conditions in the GI tract. EoE, eosinophilic gastritis, eosinophilic enteritis, and eosinophilic colitis.

[5:16] In January 2024, "Guidelines on Childhood EGIDs Beyond EoE" were published in the Journal of Pediatric Gastroenterology and Nutrition. Dr. Collins served on the task force that prepared the guidelines.

[5:35] Non-EoE EGIDs affect all sites of the GI tract except the esophagus. All sites of the GI tract except the esophagus normally have eosinophils in the mucosa, which complicates the diagnosis.

[6:03] Like EoE, the diagnosis of non-EoE EGIDs is made after known causes of tissue eosinophilia are excluded.

[6:28] Consensus guidelines help bring attention to best practices and encourage uniformity of practices.

[6:50] This is especially important for rare diseases and for centers that see fewer patients with rare diseases than the more specialized centers. Guidelines based on the best information available help these centers.

[8:03] The best distribution of guidelines is to publish them in the medical literature and sometimes in multiple journals to target audiences of allergists, gastroenterologists, and pathologists. Guidelines may be presented at national meetings to increase awareness.

[8:36] Several specialties are involved in the care of patients who have EGIDs. If patients or caregivers learn of published guidelines, they can also inform their providers.

[9:23] Insurance is a big issue for so many patients. Getting coverage for both diagnostic and treatment options can be complex.

[9:50] The guidelines may be helpful to insurance companies to accept that a certain drug is needed by a patient with a certain condition. However, if the sequence suggested in the guidelines is not followed, there may be difficulty getting coverage in the U.S.

[11:11] Patients can advocate for themselves with insurance companies by explaining that the order of testing is not important but getting the recommended tests done is important.

[11:55] The greatest challenge the task force faced was the lack of large clinical studies and quality research reports. We're making progress in this field but we're at the beginning. Dr. Collins is hopeful that progress will be made in the next two to three years.

[12:24] When there were knowledge gaps, the task force filled them in with their published research and their own experiences. It's always reassuring to have a well-conducted clinical study that verifies that your thinking is correct.

[13:29] How long did it take the task force to create these guidelines? Longer than they wanted it to take! The years they put into composing these guidelines were greater due to the interruption caused by the [COVID] pandemic. They all felt good when they finished.

[14:18] The guidelines were written by 26 authors from five continents. These are international guidelines.

[14:44] Dr. Collins highlights the pathology. The guidelines state that non-EoE EGIDs should be considered clinicopathologic diagnoses, as EoE is, meaning that biopsies from the affected site in the bowel must show excess eosinophils.

[15:10] The guidelines, for the first time, recommend threshold eosinophil values for a diagnosis in the parts of the GI tract other than the esophagus. For a diagnosis of EoE, a threshold value of greater than or equal to 15 eosinophils per high-power field.

[15:36] The guidelines now recommend that for a diagnosis of eosinophilic gastritis, a threshold value of greater than or equal to 30 eosinophils per high-power field is present.

[15:48] For a diagnosis of eosinophilic duodenitis, a threshold value of greater than or equal to 50 eosinophils per high-power field. For a diagnosis of eosinophilic ileitis, a threshold value of greater than or equal to 60 eosinophils per high-power field.

[16:03] For a diagnosis of eosinophilic colitis in the right colon, a threshold value of greater than or equal to 100 eosinophils per high-power field. For a diagnosis of eosinophilic colitis in the transverse and descending colon, a threshold value of greater than or equal to 80 eosinophils per high-power field.

[16:12] For a diagnosis in the rectosigmoid, a threshold of greater than or equal to 60 eosinophils per high-power field.

[16:18] These numbers may change over time. One or more thresholds will likely change as we gain more experience with these diseases. The pattern won't change.

[16:29] Several studies have shown that the normal pattern of eosinophil presence in the mucosa in the GI tract is that the number increases from the stomach to the right colon and then decreases throughout the colon to the rectosigmoid.

[17:40] When giving tours of the hospital, Dr. Collins found that people understood better when they knew the numbers and could see the slides of their biopsies.

[18:48] Dr. Collins found literature reviews that suggested that the GI mucosa was often normal in non-EoE EGIDs. She believes that in the next few years, as we publish more and gain more experience, we will realize that is not the case.

[19:14] There is already a method for scoring the mucosa in the stomach in eosinophilic gastritis (EoG) and there are abnormalities found in a majority of patients. We have to work on the rest of the GI tract.

[19:35] Dr. Collins was surprised that there's not very good information about the use of proton pump inhibitors (PPIs) in eosinophilic gastritis and eosinophilic duodenitis. There haven't been studies about that. We need to work on that, too.

[20:47] Dr. Collins isn't sure we can recognize misconceptions about non-EoE EGIDs at this point. It might be premature to label any belief as a misconception. We thought that eosinophils were responsible for all symptoms in EoE, but we know now that is not true.

[21:10] Dr. Collins thinks we need to wait a bit before we decide that we know for sure all about non-EoE EGIDs. Ryan is excited to learn what the research will show us next.

[21:44] Holly loved learning about the algorithm in the guidelines.

[22:01] Dr. Collins says this is the first effort to create uniformity in the way in which non-EoE EGIDs are diagnosed. This algorithm can change over time. It provides signposts for the diagnosis, based on the information we have currently.

[22:20] The diagnosis of non-EoE EGIDs should rest on symptoms and the detection of dense eosinophilic inflammation in the mucosa by biopsy and the absence of evidence of other diseases, such as parasitic and other diseases, that might cause dense eosinophilic inflammation in the GI tract.

[22:46] The algorithm suggests that the particular anatomic site or sites in the GI tract responsible for the symptoms should be determined, for example, eosinophilic gastritis or eosinophilic colitis.

[23:03] The algorithm also suggests that the involved part of the wall in the involved anatomic site should be identified.

[23:13] For example, if the symptoms are suggestive of mucosal disease, without deeper mural or wall involvement, the clinical investigation can proceed directly to endoscopy.

[23:26] However, if symptoms suggest partial or complete bowel obstruction, which is typical of deep muscular involvement, then imaging studies should be considered before proceeding to endoscopy, to confirm or refute that there is a bowel obstruction.

[23:47] If the obstruction is identified, a full-thickness biopsy of the bowel wall may be indicated, possibly requiring a non-endoscopic surgical procedure. If obstruction is not identified, then the investigation can proceed to endoscopy.

[24:05] If there is abdominal distension, suggestive of fluid accumulation, consideration should be given to sampling the fluid, using a needle to pull some fluid out to determine if there are numerous eosinophils in the fluid that would indicate eosinophilic ascites, with the eosinophilic inflammation involving the outer lining of the bowel wall.

[24:41] The signposts are a little involved. They are a reasonable way to approach working up a diagnosis of non-EoE EGIDs.

[25:34] How is EoE ruled out before using this algorithm? It's sometimes difficult to distinguish symptoms that are relevant only to the esophagus and symptoms that are relevant only to the stomach.

[26:26] Someone with upper tract symptoms only will have an upper tract endoscopy, especially if that person has mucosal symptoms that seem to be relevant to the mucosa only. The best thing is to take biopsies of the esophagus, stomach, and duodenum to be sure where the eosinophil infiltrate is.

[27:06] If the person has lower tract involvement only, such as diarrhea and lower abdominal pain, and no upper tract symptoms, a transnasal endoscopy could be used to determine if there is EoE in addition to the non-EoE EGIDs. Each case is different.

[29:12] As a pathologist, Dr. Collins has seen the guidelines for treating eosinophilic conditions evolve. They've become more specific as our knowledge of the data concerning the disease has increased. PPIs are now considered a treatment for EoE.

[30:12] Dr. Collins says we need clinical trials testing therapies in children and adults with non-EoE EGIDs. We need to determine which patients have single-site disease and will only have single-site disease, and which patients may develop multi-site EGIDs.

[30:42] Those aspects will be addressed in the next version of CEGIR, if it's funded.

[30:49] Ryan tells Dr. Collins it's been fantastic having her on the show. This has been a good overview of non-EoE EGIDs and the new methods clinicians are looking into to help people get a better diagnosis and treatment.

[31:11] Dr. Collins says we don't have validated instruments yet to measure symptoms, evaluate the mucosa, and evaluate the biopsies under the microscopes. We need to create those validated tools to help us determine the significance of our findings.

[31:31] Some data strongly suggest that eosinophilic colitis is different from the rest of the EGIDs; certainly from the upper tract EGIDs. We need to move more deeply into what eosinophilic colitis actually is.

[32:05] For our listeners, feel free to check out the article we've been mentioning in the show notes. We'll include a link to it.

[32:11] For those of you who would like to learn more about eosinophilic disorders, please visit http://apfed.org and check out the links in the show notes.

[32:18] If you're looking to find a specialist who treats eosinophilic disorders, we encourage you to use APFED's Specialist Finder at http://apfed.org/specialist.

[32:27] If you'd like to connect with others impacted by eosinophilic diseases, please join APFED's online community on the Inspire Network at http://apfed.org/Connections/.

[32:36] Ryan thanks Dr. Collins for joining us today for this great conversation. Holly also thanks APFED's Education Partners Bristol Myers Squibb, GSK, Sanofi, and Regeneron for supporting this episode.

Mentioned in This Episode:

Margaret H. Collins, M.D., A.G.A.F., Director, Gastrointestinal Pathology

Division of Pathology ML 1035

Cincinnati Children's Hospital Medical Center

"Guidelines on Childhood EGIDs Beyond EoE," Journal of Pediatric Gastroenterology and Nutrition.

APFED on YouTube, Twitter, Facebook, Pinterest, Instagram

Real Talk: Eosinophilic Diseases Podcast

https://apfed.org/specialist

https://apfed.org/connections

Education Partners: This episode of APFED's podcast is brought to you thanks to the support of Bristol Myers Squibb, GSK, Sanofi, and Regeneron.

Tweetables:

"The best distribution of guidelines is accomplished by publishing them in the medical literature; sometimes in multiple journals to target audiences of allergists, gastroenterologists, and pathologists." — Dr. Margaret H. Collins

"Guidelines may be helpful to insurance companies to accept that a certain drug is needed by a patient with a certain condition." — Dr. Margaret H. Collins

"It's always reassuring to have a well-conducted clinical study that verifies that your thinking is correct." — Dr. Margaret H. Collins

"This is the first effort to create uniformity in the way in which non-EoE EGIDs are diagnosed. This algorithm can change over time. It provides signposts for the diagnosis, based on the information we have currently." — Dr. Margaret H. Collins

"We don't have validated instruments yet to measure symptoms [for non-EoE EGIDs], evaluate the mucosa, and evaluate the biopsies under the microscopes. We need to create those validated tools to help us determine the significance of our findings." — Dr. Margaret H. Collins