Patient Comments: Eosinophilic Esophagitis - Experience

Please describe your experience with eosinophilic esophagitis.

Comment from: sagtech, 55-64 Male (Patient) Published: November 18

I have had EE (eosinophilic esophagitis) for the past 7 years. It became prevalent 5 years ago, restrictions went down to 12mm. After 8 months of dilatations to 20mm to normal, taking 110-220 Flovent seemed to help a lot. Two to three puffs twice a day and instead of inhaling, I swallow the Flovent.

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Comment from: yellsmom, 13-18 (Caregiver) Published: October 15

My daughter was diagnosed with eosinophilic esophagitis when she was 14. I refused to allow her to use steroids. That only covers up the problem. We went through the 6 food elimination process, which was a very hard and long process. Her problem is milk, as long as she has no milk she has no problems or symptoms

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Comment from: Lucy, 45-54 Female (Patient) Published: October 08

I have been diagnosed with eosinophilic esophagitis (EE). My gastroenterologist told me to use Benadryl, Nexium and Flovent. But my primary care physician drew labs to let me know exactly what to avoid in my diet. I'm highly allergic to gluten, rice, white potato, soy, eggs and peanuts. I'm eliminating these from my diet and have lost 15 pounds in 3 weeks (previously impossible), and my choking has resolved. Ask for labs. Don't cover symptoms with medications. I think it's better this way.

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Comment from: Babby, 35-44 Female (Patient) Published: December 02

I have been having swallowing problems for about one year. One day, I ate some Swedish meatballs with noodles, and the meatball was jammed in my throat. No one knew what to do because the food was not blocking my airway. I was frustrated because nothing not even water would budge the meatball. About three hours later, it went down on its own. Fortunately, I was already scheduled for an endoscopy procedure a few days later. The doctor found the Schatzki's Ring and biopsied the area. On a follow-up visit, he told me I have esinophilic esophagitis. I was started on Flovent. It made things better but did not prevent the swelling. I began to have chest pain. I thought I was having a heart attack. It turns out that my EE was causing the chest pain. This amazed me. I have found that I cannot eat anything white like bread, rice, pasta (white and wheat), potatoes or things like potato bread (my favorite). I have to carry an Epi Pen and Benadryl with me at all times. I am scheduled to see a dietician in a few days. I don't know how to cook without the above listed items. I can eat corn products. So for Thanksgiving, I made cornbread stuffing. I find that I can eat meats if I don't eat the items listed above. I can't eat biscuits. I am a southern gal, and I think this is a sign of the end of time!

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Comment from: kcmyers, 35-44 Female (Patient) Published: November 17

I am a 38-year-old female who has been diagnosed with EE for about four years now. I have had multiple dilations, and my esophagus has been torn three times. One time, I landed in the hospital for about a week. The Flovent didn't work, and I have been on and off Prednisone for the last four years. The best advice I can give others is be patient with your diet and try to be attentive to your body. I have changed from Prevacid to Protonix since the heartburn never goes away. As well, I radically changed my diet. My dilations are now down about every three to six months. As soon as the swallowing becomes difficult, get back on your steroids as soon as possible so that you can attempt to get the swelling under control.

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Comment from: Lisa M. , 0-2 Female (Caregiver) Published: November 17

My son is 2-and-a-half years old and was just recently diagnosed with eosinophilic esophagitis (EE). My son has vomited from birth. He also has severe eczema, asthma, and has had pneumonia three times, and seasonal allergies as well. I have been to every specialist under the sun and my son is constantly sick between EE and asthma. The only saving grace right now is that he will vomit and still sit down to eat typically, although the last few weeks he has been starting to refuse to eat, especially meats. No allergies have come back positive after performing skin tests for about 30 foods. The allergist gave us no hope and brushed it off saying we just have to deal with the symptoms. He has been on steroids and Prevacid. Hopefully he will get some relief. I was glad in an odd way that there was a name for what my son had. We were starting to think we were crazy that so many things could be wrong with him. Most people have no idea how it is a quality-of-life issue for the little ones that have to live with EE or the pain a parent feels to see there child suffering.

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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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