Doctors Dismissed My Breathing Issues — But It Was Eosinophilic Esophagitis (EoE)

As told to Marnie Goodfriend

May 22, 2025, is the first World EoE Day.

Three years ago, my son was diagnosed with a condition that caused a lot of stress and lifestyle changes in our family. A year and a half later, I was experiencing some burning and tightness in my chest every once in a while — but like many moms, I was focused on caring for my son and ignored my symptoms. The feeling was different from heartburn and seemed more like a burning muscle inflammation to me. But it wasn’t bothering me all the time, so I didn’t get it checked out.

Come summer, I suddenly had trouble swallowing and breathing at the same time. I thought the panic I was experiencing from not being able to swallow was causing my breathing problems or that maybe I’d developed a new allergy. I remember my son’s doctor encouraging me to take care of myself, but I didn’t really know what he meant. I was minimizing the stress I was under and not talking to anyone about it or taking care of my body. Instead, I was trying to get everything right as a mom and overlooking red flags that something was wrong.

Eventually, I went to an allergist who determined that I was allergic to mold, so I figured I must be really sensitive and my other symptoms were related to the allergy. But the symptoms kept happening, so I finally saw my primary care doctor who was completely dismissive. I told him I was having episodes of choking and having trouble swallowing and breathing. I asked if my mold allergy could be the cause of it. “Mold can’t do that,” he told me, but he didn’t offer any other explanation. My gut was telling me something was very wrong, but when he said that, I thought maybe it was all in my head, maybe it was panic or anxiety. I was completely deflated.

My symptoms continued on and off through the fall, and around Thanksgiving, I started to notice a change in my swallowing. I wasn’t just having trouble with food. Now I was having trouble swallowing in general, and it felt like there was something stuck in my throat. The burning in my chest and the breathing issues that went along with it were happening a lot more often. Lying flat, lifting things and doing physical labor all seemed to make it worse.

I saw a gastrointestinal doctor (GI) in January who spent a lot of time with me and recommended I get an endoscopy right away. I was pretty lucky that she listened to me, and I didn’t have to go through a bunch of other steps before getting the test. That’s when I was diagnosed with classic
eosinophilic esophagitis (EoE), a chronic condition that causes inflammation in the esophagus, and it was determined that my acid reflux was pretty severe.

I felt angry and worried. I tried not to go down the internet rabbit hole, but what I did read confirmed that EoE is a chronic condition that always has to be managed. I was upset. I didn’t need one more thing to manage in my life. I also learned that there are several reasons you can develop EoE. I’m somebody who believes that there’s a root cause for what’s happening in your body. If you can identify it, you can do a lot of healing on your own, but after going through the whole process with my son, I was exhausted at the thought of doing that again for myself.

Ironically, I had a unique understanding of EoE because my close friend’s son, Jeric, was diagnosed with the condition when he was 8. I knew the long road his family went down to understand what was causing the disease and learn how to manage his symptoms. His mother, Heather, and I have been friends since I got married and our kids grew up together, so I was with her while she was navigating his symptoms and through his diagnosis. Going through all the invasive testing is hard on a little boy, and I saw how it took a toll on her. But watching Jeric go through the same challenges I am now facing reassured me. If a young boy can get through it, surely I can too.

Today, I’m in the early stages of trying to understand what’s causing my condition. Necessary body functions, like swallowing, are difficult. My GI started me on corticosteroids and another acid-reducing medicine. I also decided it was time to see someone who could look at my body as a whole, too, and found a general practitioner who specializes in functional medicine. I don’t want to be on steroids because they are causing side effects like arthritis symptoms. If I miss a dose, my throat swells, the burning I often feel increases, and I get a fever. It feels like a bit of an experiment, and I don’t like that.

Our bodies are made to heal. But right now, something is getting in the way of that process for me. So, for now, I’m following what my GI has suggested and am trying to get my body healthier so it can better fight EoE. I know I’ll have to manage the condition for the rest of my life, but I’m determined to get to a place where it’s not causing such severe symptoms.

I’m exercising more, meditating twice a day and doing breathwork. I pay close attention to my diet, eating only unprocessed whole foods and eliminating some foods that are known to cause inflammation and allergies. I’ve already identified some foods that make my symptoms worse, so, in some ways, this has been a good wake-up call for me. It’s hard to eat outside of the house or go out to restaurants and find something that won’t trigger my EoE. Who knew tomatoes are in almost everything?

What I’ve learned through this journey is that, if your body is telling you something, listen to it, and find somebody who takes their time and believes you. I think women in particular are often dismissed by healthcare providers who tell us our medical problems are all in our heads. It’s so important to find people who will advocate with you, who are genuinely dedicated to investigating what’s going on with our bodies and what we can do about it.

Resources

American Partnership for Eosinophilic Disorders – Patient Brochure
American Partnership for Eosinophilic Disorders – Specialist Finder
American Partnership for Eosinophilic Disorders – Patient Education Toolkit
American Partnership for Eosinophilic Disorders – NavigateEosCare.org
American Partnership for Eosinophilic Disorders – Patient Conference
American Partnership for Eosinophilic Disorders – Online Community

This educational resource was created with support from Sanofi and Regeneron.

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