Patient Comments: Eosinophilic Esophagitis - Experience

Please describe your experience with eosinophilic esophagitis.

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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Related Medications: Prednisone

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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Comment from: KellyB, 35-44 Female (Patient) Published: October 16

I am a 38 year old woman just diagnosed with EE. I have taken antacids several times daily as long as I can remember. Not necessarily for a burning feeling, but more for the pressure. Last month I had a severe attack and knew it was that same feeling but so much worse. I ended up in the emergency room after three days of not being able to eat or drink anything and sleeping sitting upright with a heating pad on my chest and another on my back. The pain was severe and scary. After six hours of testing (for a heart attack, pulmonary embolism, etc.) a CT scan with contrast dye showed my severely swollen esophagus. Prior to that I had just started a diet program that is very high in lean protein, low in carbs and includes a weekly hCG (Human chorionic gonadotropin) injections. I'm not sure if the increased protein levels or hormones in my system triggered the severe case, but I'm glad it lead to the endoscopy and biopsies that ultimately allowed the doctors to properly diagnose me. I'm already on Protonix (80mg daily) and it seems to help a lot! I've only taken antacids a few times over the past week, instead of a few times a day! I go to the doctor next week to see about an anti-inflammatory, etc. I have had allergies and asthma for years, so this makes a lot of sense to me. I look forward to learning more about this.

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Patient Comments

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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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