Jun 30, 2026
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 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 apfed.org/specialist.
[36:37] If you have personally been impacted by eosinophilic disorders and are interested in sharing your experiences, please check out 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 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.org
Esophageal string test (early
research was supported by an APFED
grant)
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.