Patient Comments: Eosinophilic Esophagitis - Experience

Please describe your experience with eosinophilic esophagitis.

Comment from: mm, 35-44 Male (Patient) Published: June 28

Sulfites! I have been suffering from EE for 10+ years. I finally figured it out. Do the research on what food contain sulfites. It cuts across a variety of food groups so you wouldn't necessarily make the connection. Drink wine? sulfites. Eat dried fruit and granola bars w dried fruit? sulfites. Lemon juice concentrate? sulfites. Sulfites cause asthma symptoms in asthmatics...EE is the same cell, but in the esophagus instead of the lungs!

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Comment from: Female (Caregiver) Published: January 16

My daughter is a 12 month old female. She's had some severe symptoms of eosinophilic esophagitis since birth. There was never a formula that agreed with her and we tried everything from neocate to elecare resulting in failure to thrive. She is allergic to milk, nuts, eggs, wheat, soy, shellfish, dogs and dust mites. I have to make all of her foods from fresh vegetable and fruit. Recently we were put on a vegetarian diet until our further allergy testing in three weeks. They wanted us to try another form of steroids (pulmacort) to see if she improves. These medications are our last option. Next stop will be the research hospital. She had been admitted to our local medical center many times since birth for dehydration and most recently was two weeks ago, she was admitted to be put on iv steroids b/c the oral wasn't enough. She has lost weight and the ending result was always back on predisone. We'd do great and as soon as we finished the steroids, we'd be back to vomiting and refusing to eat. Her other conditions are asthma, allergic rhinitis, acid reflux, asthma, atopic dermatitis, and severe food allergies. It has been a battle.

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Comment from: ATP, 35-44 Male (Patient) Published: November 17

I'm a 39-year-old male who has had sporadic episodes (eight to 10 times per year) of choking on food for about 20 years now. I have never had any experience with heartburn, reflux or anything else. I was always able to bring it up with relative ease (although a fair amount of embarrassment), until this past weekend when I could not swallow anything for 18 hours. I had a trip to the ER for an endoscopy and cleared the impaction. The doctor did a biopsy that suggests EE.

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Comment from: Judgenut74, 25-34 Male (Patient) Published: November 17

I'm 33 years old, and I was just recently diagnosed with EE. EE is a very scary condition before you are properly diagnosed. It has a lot of the same symptoms as GERD, and if you have your first attack, you would think you are having a heart attack. My very own experience was scary when I couldn't pass even a banana or properly chew food. I suffered from anxiety attacks and even start thinking that I had cancer. So if you ever experience difficulty swallowing, and you have a history of asthma or allergies (even child asthma that you have outgrown, that's what I have), the best thing to do is to talk to your doctor and see a gastroenterologist. Schedule an endoscopy and wait for the biopsy to treat your condition properly. Good luck to all, and be safe.

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Comment from: Robert, 45-54 Male (Patient) Published: October 30

I am a 48yr old male who has been suffering from a chronic cough six months of the year, going back to 1987. I have had numerous allergy tests, three full pulmonary breathing tests, have seen an ear,nose and throat doctor who performed a nose job. I have tried just about every med the Docs could come up with to stop the cough. Finally, after having several bouts of the hiccups, followed by heartburn, followed by severe vomiting, I was referred to a gastrointestinal doctor. After performing his gastro scope procedure, they discovered I have a severe case of eosinophilic esophagitis. He prescribed Flovent and Prilosac. I was told to swallow the mist after puffing. I am excited about the fact that we finally believe we found the reason for my cough, which is extremely aggravating. I am optimistic that the treatments will work. On a side note, I am looking forward to losing some weight. I was told I could not eat or drink anything for 3 hours after my medications. I use the Flovent after breakfast and dinner.

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Comment from: Lisa, 25-34 Female (Patient) Published: October 28

I am a 29 year old recently diagnosed with eosinophilic esophagitis. After several episodes of food getting stuck in my throat and emergency room visits for the "medical grade pop rocks", my GI doctor finally diagnosed me with eosinophilic esophagitis (EE). Blood tests also indicated a gluten allergy. Following a complete gluten elimination diet made a 100% difference. All tummy upset, acid, GERD, and bowel symptoms disappeared on the gluten free diet, including near complete reversal of asthma and nasal allergies. Since eliminating gluten, I have also discovered I have oral allergies to fresh melon, bananas, and pineapple. I strongly encourage everyone with EE to check into their food allergies, and to be ever vigilant in reading food ingredient labels, especially at restaurants.

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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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