Patient Comments: Eosinophilic Esophagitis - Symptoms and Signs

What symptoms and signs did you experience with eosinophilic esophagitis?

Comment from: Helen, 55-64 (Patient) Published: June 16

I was diagnosed with eosinophilic esophagitis (EE) seven years ago. After three hospitalizations with stuck meat in my esophagus I now only eat minced meat and have not needed to attend emergency since this diet change. I am now under a new doctor and am awaiting a dilatation. My new doctor has recently given me a course of prednisolone (when my problems were failing to respond to swallowed Flixotide) which has helped. He said that some of the latest thinking is that non-steroidal anti-inflammatories may be able to help with this condition. Good luck to all my fellow sufferers.

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Comment from: D, 45-54 Female (Patient) Published: August 18

I was just diagnosed today with eosinophilic esophagitis (EE) and I believe it has something to do with my latex allergy. I have many food allergies and almost every time I eat out I get symptoms. Some restaurants still use latex gloves in food preparation. I have tried to bring awareness to this and will always ask now. This pain is unbearable at times and people don't understand it, they always say it is just GERD. I am going to do some more research before I decide on a diet plan.

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Comment from: lily, 45-54 Female (Patient) Published: August 10

Recently I was diagnosed with exercise induced anaphylaxis, and eosinophilic esophagitis. I also had surgery for gerds. I notice that a lot of foods upset my stomach. I was told since I have exercise induced anaphylaxis,I should not eat certain foods, fruits,vegetable, grains like rice and wheat, and shell fish or sea food 5 hours before I exercise, because I may have a deadly allergic reaction, and I have in the past, so I must carry and epipen. I also have disphagia and food gets stuck in my throat. I wonder if some of us with eosinophilic esopagitis also have undiagnosed gluten intolerance, and some how, all of the above mentioned might not be tied together? I never realized just how much hidden gluten there is in some fruits, vegetables, meats and so on. There should be more research done on this. Funny how I had a lot of these problems as a child, but some of it has only recently been diagnosed in middle age.

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Comment from: frustrated, 3-6 Male (Caregiver) Published: March 07

My son was diagnosed with numerous food allergies and EE (eosinophilic esophagitis) at the age of 1. We got everything under control with an elemental formula diet when we was young and has been on a restricted diet for the past 3 years. Well, he started refusing to eat or very small amounts, and off and on diarrhea, so an upper scope was done showing he is active and probably has been for quite some time. He is stubborn and will just refuse to eat until he is offered junk - chips, cookies etc. I don"t understand this, his doctor is suggesting he go back on formula as a supplement but he won"t drink it. He develops agitators of his EE, so a rotating diet hopefully would work, but how does he just deal with the feeling and not say it hurts! Does he not understand or just unbelievably stubborn? I am having a real difficult time with knowing whether to just leave him alone or push the formula and/or medication.

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Comment from: 19-24 Male (Patient) Published: March 08

EE sufferer for 3 years. Food sometimes gets stuck. I try to wash down w/water. If doesn't wash it down, thick mucus that my body produces tries to get it up. Pain it the butt! Embarrassing if in a public place or when at a social gathering. Been Gluten free for 2 years now and seems to be helping greatly. Also staying away from other foods I'm allergic to such as all raw fruit, raw veggies, all tree nuts and of course wheat. Less frequent food gets stuck now! Pollen allergies nearly gone! Being Gluten free has made my digestion better. No more constant upset stomach and gas. From what I know, pollen has very similar proteins to ones in fruit, raw veggies, and TREE nuts. Go figure! Definitely a correlation there.

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Comment from: PSwearin, 25-34 Male (Patient) Published: January 20

I'm a 31 year old male that was diagnosed with EE about 6 years ago. My experience with the disease has been a roller coaster ride. I've experienced some acid reflux, including waking up in the middle of the night choking on it. But thankfully those incidences are few and far between. My personal experience with swallowing issues has been that under most circumstances, I can force the food down that gets stuck by swallowing air. I don't like taking medications so I've dealt with the problem that way until it gets so bad that I have to go on a 2 week regimen of swallowing flovent, which seems to be necessary for me at least once year.

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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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