What Does EoE Feel Like?

Can you help? Jenny Sprague (@xFoodAllrgyhelp) posed a great question recently on Twitter: “what DOES EoE feel like? just throat irritation or more?” Her little one is too young to describe what’s going on and she’d like to have some idea.

Although we may experience eosinophilic gastrointestinal diseases (EGIDs) differently—kids and adults, especially—I thought it might be helpful to crowdsource some personal experiences as a way to help one another and also the parents of young children. If you have EoE or a related EGID, or if your child is old enough to describe the sensations, would you be kind enough to share a description in the comments below?

Here’s what esinophilic esophagitis feels like for me:

Swallowing

Most of the time when we eat, there’s little to notice. You take a bite, you feel the food in your mouth, and after enough bites, you feel full. Apart from a really exceptional meal or unusual food, eating doesn’t ask much of us. (Consider the phrase “mindless eating.”)

When my EoE kicks up, the passage of food from mouth to stomach demands attention. I take a bite, and suddenly, there’s a boulder in the way. When things are really inflamed, the stuck food hurts. It hurts a lot, with a sudden but intense ache in my throat. Remember the last time you took a bite that was too big, or maybe that you accidentally swallowed too soon? It’s like that, only impossible to know if the food will make it down, or come back up, or if I will have to cough it up (doubly painful), or whether the next bite will do the same.

At the very worst times, the pain will not be just in my throat. The pressure will push out and radiate through my entire chest. Everything squeezes from the inside.

Usually, things don’t get that bad out of the blue. When a flare-up is coming, there will be days or weeks when I’m just a little too aware of my swallowing. It can be very fluttery and subtle, but since the descent of food usually happens out of consciousness, noticing that you’re swallowing is never a good sign.

My husband has begun to recognize cues, too. I’ll turn away from the conversation, concentrate deeply on swallowing, sometimes wince or bring my hand to my throat. “What does it look like?” I asked. “It looks like you’re having trouble swallowing,” he said, “but if I didn’t already know what was going on, I might not notice.”

Nauseua and Feeling Icky

My EoE and esoniphilic gastritis usually mean nausea, ranging from mild to can’t-concentrate-on-much-else.

When I was a teen with eosinophilic gastroenteritis, the nausea would come upon me very suddenly and intensely–in the middle of a conversation, in the middle of a store, sometimes even waking me from sleep. I would swallow and swallow and swallow. Sometimes I could fight it down, but usually ended vomiting it up.

It was my sister who became adept at spotting the quietness and swallowing: “Are you o.k.? Are you going to throw up?”

Now, there’s rarely throwing up, but there have been pre-treatment days when I’ve gladly subsisted on ginger ale and rice. Similarly, there have rarely been the hours of dull unremitting stomach pain that I used to experience, but those sensations can consume the whole day. There’s nothing you can do when you hurt that much.

Yeast

With steroids have come esophageal yeast, alas. And yeast has its own effects that bear mentioning because some of them seem like EGID symptoms in their own right. For me, they are:

  • A burning sensation in my throat while I’m eating or shortly after. It feels very reflux-y, as I’ve noted previously.
  • A hideous bitter taste in my mouth that can alter the flavor of foods and make me want to reach for mints or gum that do no good.
  • Coughing and hoarseness that won’t go away, no matter how often I clear my throat.

Do any of these symptoms sound familiar to you? Do you experience sensations not described here? Please leave a comment. Your words could help someone who loves someone with EoE understand just a bit better what it can feel like.

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About eosgirl

Trying to stop worrying and love my eosinophilic gastrointestinal disease.
This entry was posted in Case of EosGirl, Education, EGID Stories and tagged , , , . Bookmark the permalink.

9 Responses to What Does EoE Feel Like?

  1. Pingback: Recipe from Limbo: Slow Cooker Chicken Stew With Sweets and Black Beans | EosinophilGirl

  2. Natalie ball says:

    Thanks for this post. I’ve been longing for a post like this for years. It is invaluable to me as I also have a young child with EoE. She is now five so her ability to communicate and describe what is going on is getting better.

  3. eosgirl says:

    Thanks for the kind response, Natalie. I’m glad it was helpful, though have to add that children may not experience symptoms in exactly the same way as adults. I’m sorry to hear that your daughter is part of the club. I hope that you’ve been able to find some ways for her to feel better.

  4. Naomi says:

    My 11 year old daughter is having a bad day today. She has an extreme burning in her chest and throat. Her chest feels like “she has been hit by a football”. She feels “like a dragon breathing fire”. She has a phlegm like coating at the back of her throat that just sits there. She wants to burp for relief but it just burns her throat more. She also gets very nauseous with it all. She also feels anxious about going anywhere when she is like this, so getting to school can be really hard and impossible some days.

    • eosgirl says:

      I’m so sorry for what your daughter is going through. I have a child and I would absorb pretty much any pain or discomfort if it meant that he did not have to. It’s taken me a while to respond to your comment. I hope your daughter has found some relief somehow. She must be very strong, and you are, too.

  5. Me says:

    My EOE feels like I am having a heart attack. I didn’t know I had EOE. I thought I was having a heart attack. It doesn’t always happen right when I eat something. Often the next day it will flare up and that is why I never associated it with anything I had eaten. When I was diagnosed, my doctor said that it can be one of the most painful conditions comparable to Gall Bladder or Heart attack.

  6. Megan says:

    I am so grateful to have come across this post. I am a 40 year old female that has been recently diagnosed with EoE and I am trying to understand all the feelings and concerns that come with it. Your post is 100% how I feel. Your description of symptoms is exactly what I am feeling, so it has taken part of the mystery away. I am still on an elimination diet to figure out all of my triggers and at times it is very overwhelming. Reading your words has given me so much peace. Thank you.

    • eosgirl says:

      Hi, Megan. Thank you so much for leaving this note. I’ve let this blog languish, but am so glad to know that these old posts are helpful to you. I’m sorry you find yourself here among those of us with EoE. Here’s hoping you get some insight very soon into what your triggers are and that you find yourself on the road to feeling much, much better!

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