Patient Comments: Eosinophilic Esophagitis - Symptoms and Signs

What symptoms and signs did you experience with eosinophilic esophagitis?

Comment from: John, 45-54 Male (Patient) Published: April 08

I have had pain and trouble swallowing. Sometimes, I need to throw up the lodged food to get it out. This has gone on for at least eight years. Then a doctor tested and said I have eosinophilic esophagitis. I tried an inhaler and Nexium. These help, but I've discovered on my own that during Lent, when I give up drinking all alcohol, that I have no symptoms during the 46 days of Lent. I believe some of us are allergic to alcohol or something in it.

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Comment from: Lisa Gay, 45-54 Female (Patient) Published: February 01

I am a 46 year old college student. I was recently diadnosed with E.E. As soon as my endometriosis eased up I got this. I have always been a slow eater, the last one done. Recently my doctor took blood and noticed the high white blood count after going in for a bleeding ulcer. I will not take flovent as it gave me thrush. Now I have oral lichen planus as well. I was dilated after doing the avoid wheat, dairy, rice(which Im allergic to) and peanuts. The esophagal rings are now three time better. I guess food does play a big part, good luck to you all.

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Comment from: 45-54 Male (Patient) Published: January 03

I have had eosinophilic esophagitis for several years. My symptoms when an event occurs is that I can't swallow or belch for anywhere from a few minutes to 36 hours. Proton pump inhibitors make me better for a few weeks then I get much worse. I have had dilation and the last time they said my esophagus was too inflamed to dilate. I went on the 6 food elimination diet that has virtually eliminated my issues and have recently started adding back some foods. Try eliminating soy, milk, eggs, wheat, nuts and sea food. This leaves a diet of basically oatmeal and rice with chicken but at least I can eat. I have previously tried to isolate specific foods and that did not seem to work. In my case a flow vent and proton pump inhibitors caused more problems than they solved. Try the diet and at least you can eat.

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Comment from: srosea, 19-24 Female (Patient) Published: December 13

I am 22 years old and was diagnosed with EE around 2 years ago. The diagnosis came after years of my mom taking me to doctors throughout my childhood where she was told I had an eating disorder, I was just being fussy or that it was all in my head. I was given Prednisolone and Omeprazol for treatment. My swallowing was so restricted that I had to have soluble versions. The steroids did help somewhat but caused insomnia and chest pains. I have recently had a baby and am breast feeding so can not go back on the steroids right now. I find that I can not eat anything like rice, pasta, raw vegetables, fruit, cheese and more. People do not realize how restrictive this disease is. I now suffer from panic attacks when I eat out, and since takes me so much longer to eat I find myself explaining the disease to anyone who isn't aware of it. I have been told that I will be eating through a tube by the time I am 30 if the steroids don't work. I really hope they do some more studies on this crippling disease.

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Comment from: atet0810, 3-6 Male (Caregiver) Published: November 13

My son is 4 years old and has had symptoms of eosinophilic esophagitis since he was 6 weeks old. He was diagnosed with EE in June. He has been taking Flovent, ranitidine and singular. He seemed to be doing well with only about 6 episodes since taking all of the medications. Recently, he has been sick almost every day, and almost every meal. He is afraid to eat. It kills me to see him this way. He is so sad and afraid. We will be going back to the doctor to see what else we can do. If you have a child with symptoms of reflux and it continues, please do not give up. He has undergone allergy tests, with only environmental allergy results. They did blood work, which found he was "possibly" allergic to eggs, wheat and milk.

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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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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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