Patient Comments: Eosinophilic Esophagitis - Experience

Please describe your experience with eosinophilic esophagitis.

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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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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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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