Patient Comments: Eosinophilic Esophagitis - Symptoms and Signs

What symptoms and signs did you experience with eosinophilic esophagitis?

Comment from: HK, 35-44 Female (Patient) Published: September 12

I am a 39 year old woman and I have had EE for as long as I can remember, though it was just diagnosed about three years ago. I have always had trouble with food getting stuck in my esophagus, especially during stressful times, and the result is that I eat very very slowly with tiny bites and I prefer to eat alone so I don't have to disrupt a social meal by getting up and having to regurgitate my meal. It was such a relief to get the EE diagnosis! For years GI doctors said I had GERD though the symptoms didn't fit and the proton pump inhibitors did nothing. I still have the swallowing problems but at least I know what it is now. It happens a few times a month, more if I'm stressed out. So far no luck in figuring out what the triggers are, despite lots of allergy testing. The best time for me in terms of not having EE episodes has been during my pregnancies. No EE flare-ups for those nine months! I guess it's because your immune system is suppressed during pregnancy. Thank God neither of my children have symptoms of EE. I feel better just knowing that there are other people with this disorder. It's socially embarrassing. I have close friends who thought for years that I have bulimia or an eating disorder because of all the vomiting after eating.

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Comment from: OldestCity, 65-74 Male (Patient) Published: September 12

I am a 66 year old male that has had swallowing problems for 12+ years. Food would get stuck. Not a piece of meat, but it could be as little as a lettuce leaf. It seemed to always occur at the beginning of a meal. Usually it would finally go down in ten minutes. The longest it lasted was nearly an hour. I could swallow a little saliva, but that was about all. Then about two weeks ago, a piece of pasta or fish got stuck and wouldn't go down for five hours. I couldn't even swallow saliva. I tried throwing it up, but it wouldn't move. A trip to the ER with an emergency endoscopy and a biopsy revealed EE. Most info indicates that the cause is an allergic reaction to something, probably foods. Six months ago, I had an endoscopy because of upper chest bloating. My esophagus appeared normal. I got off of lactose and that solved that problem, but I started drinking soy milk and eating more fish and shellfish. Now the recent endoscopy showed rings, ulcers and inflammation. So, now I believe that I'm allergic to soy and possibly fish and/or shellfish. I can't get in to see the specialist for three months, so I'm thinking of asking for allergy testing on my own before then.

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Comment from: jmhh, 25-34 Male (Patient) Published: October 26

I have had a terrible swallowing problem that feels as if I cannot breathe and cannot get the food down. While it has been swallowed and I'm not choking, nothing will get by. I either will try to drink something carbonated to get it down or walk around. It can be quite scary because, at times, it will take up to 10 minutes to go away, and I will have to try and force myself to throw up. Some foods I have noticed have been chicken, fish, rice (mainly long grain), quinoa (almost every time I try to eat it), and various other things, including breads. I never had a biopsy done but plan on getting one soon because recently I have had a sore throat almost every morning. I was diagnosed with this eosinophilic esophagitis (EE) 10 years ago after receiving an upper GI endoscopy and swallowing test.

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Comment from: karen, 55-64 Female (Patient) Published: March 16

I was 57 when diagnosed with EE. I am a normal weight and very healthy with only seasonal allergies. The scratch test for food allergies and blood test for food allergies revealed nothing. The symptoms consistent with GERD, biopsy confirmed EE. I do have hiatal hernia, never any symptoms related to that (never heartburn! I have no symptoms and no longer fear eating for fear of a random swallowing episode.

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Comment from: Lynn Murdock, 45-54 Female (Patient) Published: December 27

I am 53 years old. I have had the issue with food getting stuck for 8-10 yrs. I thought that there was nothing that could be done except have a scope and get dilated. It is awful to go out to eat and have to sit there and not eat b/c it's stuck. Getting up and going to the bathroom and trying to throw up so that you can go back and finish your meal is such an embarrassing thing. I am so relieved to see others here who have the same problem. I went to the specialist today and found out I have EE. I have had many scopes in the past. Now I am scheduled to find out what I am allergic to but the reality is wheat, eggs, milk, soy, seafood are the usual suspects. I want to know so I can eliminate what is causing this. I am glad to know at least there is something I can do.

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Comment from: Mario, 25-34 Male (Patient) Published: August 15

I'm a 32 year old man with eosinophilic esophagitis. I don't experience swallowing problems but more so clinching feelings on the left side of my chest irregular heartbeats and fainting feelings at times. I am recently taking Flovent which helps at times and Omeprazole DR 20 MG for acid reflux. Today I experience real bad feelings in my chest while working at an asphalt plant, I thought I was going to pass out. I took off work but now I have been feeling bad all day. Everything always feels like it's in my heart and it scares me at times depending on the severity. Do any one else feel the same way at times? And what's a good remedy?

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Eosinophilic Esophagitis - Experience Question: Please describe your experience with eosinophilic esophagitis.
Eosinophilic Esophagitis - Treatment Question: What was the treatment for your case of eosinophilic esophagitis?
Eosinophilic Esophagitis - Diet Question: Did you try an elimination diet to treat eosinophilic esophagitis? Please share your story.
Eosinophilic Esophagitis - Diagnosis Question: Please describe the events that led to a diagnosis of eosinophilic esophagitis.

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