Patient Comments: Eosinophilic Esophagitis - ExperiencePlease describe your experience with eosinophilic esophagitis.
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. Was this comment helpful?Yes
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 Was this comment helpful?Yes
Related Medications: marshmallow
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. Was this comment helpful?Yes
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. Was this comment helpful?Yes
Related Medications: soy Patient CommentsViewers share their comments
Eosinophilic Esophagitis - Diet
Question: Did you try an elimination diet to treat your eosinophilic esophagitis? Please share your story.
Eosinophilic Esophagitis - Diagnosis
Question: Please describe the events that led to a diagnosis of eosinophilic esophagitis.
Eosinophilic Esophagitis - Treatment
Question: What was the treatment for your eosinophilic esophagitis?
Eosinophilic Esophagitis - Symptoms and Signs
Question: What symptoms and signs did you experience with your eosinophilic esophagitis?
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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.