Patient Comments: Eosinophilic Esophagitis - Experience

Please describe your experience with eosinophilic esophagitis.

Comment from: Tammy W., 13-18 Female (Caregiver) Published: December 16

My son who is just shy of being 15 years old was diagnosed with EE (eosinophilic esophagitis). He has been put on medications and we have done elimination diet of corn, soy, milk, eggs, peanut, tree nuts, carrots, beans, peas and celery. He is allergic to all trees and weeds etc. He is still having issues with vomiting and feeling like he has something stuck in his throat. I am very concerned. This is scary.

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Comment from: Sambo, 35-44 Female (Patient) Published: November 14

I have been suffering with EE (eosinophilic esophagitis) since my early twenties. It's been an occasional episode of food getting stuck in my throat, which would release quite quickly. Over the years this has worsened and now it happens pretty much every time I eat. The food gets stuck in my throat and my body behaves as though I am choking. I produce a huge amount of saliva which I can't swallow so have to spit out. I have tried forcing the food down with various types of drinks to no avail. I can't even force the food back out by vomiting. I am able to vomit food from my stomach but not the "stuck" piece, which remains firmly in place. I suffer with heart burn regularly and an irritating cough, especially when lying down. I have tried the steroid pump swallow, the proton pump inhibitors, antihistamines, allergy testing and elimination diets which have highlighted certain allergies but not enough to alleviate the issue. I am pushing to be put on an elemental liquid only diet and start from scratch. Fifteen years is far too long to be suffering with this and the doctors seem only to know the same amount as I have been able to find out for myself online.

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Comment from: Sean, 19-24 Male (Patient) Published: November 14

I am a 19 year old male and I was diagnosed with EE (eosinophilic esophagitis) about 2 months ago. I began having serious symptoms in February of 2013, the last stretch of my senior year in high school. I never had any issues with swallowing, the symptoms I experienced were a severe sensation of the need to gag and severe heartburn. I never did gag much because I kept telling myself that it was simply anxiety. I did not think I was going to be able to finish out my high school career with having to throw up all of the time or continue on to college. It took me 6 months to realize that it was not anxiety and to go see the doctor about it. The endoscopy showed that I had multiple ulcers on my esophagus from the daily heartburn. After being on Flovent to reduce the inflammation and heartburn medication and an exclusionary diet I feel so much better. I still have a bit of residual anxiety about it though, but I am really working on it. I also had allergy testing done and it showed that I was allergic to yeast, oats, barley, and rye. Doing all of this has helped so much in not only making me feel physically better but also putting my mind at peace knowing that this feeling wasn't all in my head.

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Comment from: 19-24 Male (Patient) Published: October 22

I am 21 years old and was just diagnosed with EE (eosinophilic esophagitis). Since my EE was so bad and not taken care of at a young age it traveled from my throat and into my stomach. That caused a lot of issues for me when eating food. If something didn't bother my throat it would bother my stomach or the opposite. I have been on Elecare for about 10 months now and have gained close to 20 pounds (weight gaining has always been an issue for me). I no longer throw up or have stomach pains. I have gotten color back and look healthy. I tried all of the steroids and none of those worked for me. The formula Elecare has been a life saver for me.

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Comment from: Jenn, 25-34 Female (Patient) Published: January 31

I've had EE (eosinophilic esophagitis) since high school but wasn't diagnosed until 15 years later when it got much worse. I have found that there is a strong connection between my stress level and the EE. When life is good and stress is low so is my difficulty swallowing. Also, I had a lot of success reducing my acid reflux by taking apple cider vinegar regularly.

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Comment from: Frustrated, 19-24 Male (Caregiver) Published: January 08

My son was diagnosed with EE (eosinophilic esophagitis) at 17 after two years of weight loss and he was almost bedridden. After a few months on Neocate Splash he began to eat and gain weight with a very restricted diet. About 4 months ago he lost his appetite and in turn has lost about 20 lbs. He really doesn't have a swallowing issue.

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Eosinophilic Esophagitis - Symptoms and Signs Question: What symptoms and signs did you 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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