Patient Comments: Eosinophilic Esophagitis - Experience

Please describe your experience with eosinophilic esophagitis.

Comment from: 19-24 Female (Patient) Published: September 17

I am a 21 year old female who was recently diagnosed with EE. This has been an on going problem through out my life but I always thought that it had to do with just taking bigger bites than i should be taking. My doctor is now confused however because my symptoms are the same as most patients but i have one more symptom that does not make sense. Along with a not being able to pass food properly i also regurgitate about 50% of my food. However I do not do this voluntarily. Does anyone else have these problems? I have had asthma my entire life and have had eczema multiple times through out my life which has been know to correlate with EE.

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Comment from: Terri, 35-44 Female (Patient) Published: August 26

I am a 36-year-old female, recently diagnosed with eosinophilic esophagitis (EE). I have had problems swallowing for more than 16 years. I have had three different barium swallows over the course of those 16 years, and the doctors only said that I probably had some type of stricture and gave no recommendation on how to fix the problem. I could not take large pills, or talk while I ate, or even participate in family meals, without getting food stuck, which caused severe pain until it came up or went down. I only suffered from heartburn during the tail end of my pregnancies. I decided to try one more time, and the doctor recommended an endoscopy. It was awesome: He found out I had a Schatzki ring, dilated it and took tissue samples that showed I had EE. The dilation alone fixed the big problem. I am sure my EE was caused by the constant irritation of food getting stuck, and or vomiting due to food getting stuck. I did have hay fever that I have been treated for, and I am on Flovent and Prilosec. I can now participate in family meals. I don't have to scout out the restroom in restaurants for emergency food problems. I am enjoying eating again.

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Comment from: Let me eat , 25-34 Male (Patient) Published: August 26

I am a 34-year-old male and started having difficulty swallowing in high school. I had been diagnosed with an esophageal web at the top of my esophagus and a ring near the bottom after a barium swallow in 2001. I was told the only treatment was periodic dilation. Nurses and office personnel often stated I was young for these dilation procedures. The dilations didn't really seem to help either. My health insurance changed and I wanted to try another doctor. This time he suspected eosinophilic esophagitis (EE) and performed a biopsy. I was diagnosed with EE and was given the Flovent inhaler with Fluticasone. I just started taking the medicine, and I am very hopeful.

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Comment from: Joe, 35-44 Male (Patient) Published: August 20

I am a 43 yr old male recently diagnosed with EE. I have had no recurrences in the six months since my dilatation and Nexium Flovent treatment. My first difficulty swallowing was at age 11. At 16 I had barium swallowed/x rays but nothing showed up. At 17 the radiologist had me swallow a marshmallow first then drink the barium--it showed a stricture. Over the next 25 years I would be dilated every 3-5 years. The last 13 years I was on Zantac. The symptoms (difficulty swallowing—typically, rice, tuna fish, etc., sticky things not pieces of meat) would return steadily over time until I would get dilated again. Six months ago I went to a new GI who immediately thought it sounded like EE and did the biopsy which showed the increased levels of eosinophils. It's nice to know the cause and hopefully further treatments will be needed less frequently

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Published: July 30

My 8-year-old son has had EE since birth. He was first definitively diagnosed at 1 1/2-years-old. Later, at 3-years-old, more allergens were identified that had not shown up on previous skin tests. We eliminated 20+ allergens and used Flovent. He has been free of disease (on 3 biopsies) for 3 years. Prior to that he suffered with cyclic vomiting syndrome and asthma. Now he no longer requires medication and eats without difficulty. His only remaining allergies to food include milk, nuts/peanuts, melon and teff. At one point we were desperate as parents and didn't feel equipped to handle this problem of EE. Now all the hardship is a distant memory. I hope this is an encouragement to other parents and children who are dealing with this annoying disease.

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Comment from: Hopeful, 3-6 Female (Caregiver) Published: October 08

My son was diagnosed with eosinophilic esophagitis when he was 4. We went to specialists/allergists, did elimination diets and all kinds of things. I truly believe what helped him was the Ayurvedic approach. In this approach, the concept is very much in tune with nature. Keeping the person not constipated which is the root cause of lot of conditions.

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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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