Patient Comments: Eosinophilic Esophagitis - Experience

Please describe your experience with eosinophilic esophagitis.

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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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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Comment from: protective mommy, 0-2 Male (Caregiver) Published: October 16

My 21 month old son was diagnosed with EE 6 months ago. We knew there was something wrong from the time he was 6 months old. He has many food allergies: milk, wheat, eggs, beef, yeast, peas, but he was throwing up food we knew was safe for him. At 15 months, we finally had the referral when he had lost 3 pounds at his 15 month appointment instead of gaining and the GI doctor told us he had EE. He was on Flovent for a few months and did great! After about 5 months, he started to occasionally show signs that concerned me, but I think we wanted so badly to believe that he was okay that we denied it. We are now on Prednisolone for the past 5 days and he is eating again. But, it gets to the point where we almost have to reteach him how to eat again. He is so fearful of food and what it might do to him. He puts his hand up to his throat and says, "ow". It is awful! This is a terrible disease and I do hope they can find out what is causing it or can find something to cure it completely.

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Comment from: Afgex, 25-34 Female (Patient) Published: September 26

On Thursday morning I went to the dr and had multiple allergy tests performed. Thursday night I took my normal doxycycline antibiotic and went to bed. I woke up at about 3:00 am with severe heartburn. I have not had heartburn since I was pregnant over 3 years ago. I have had severe heartburn pain and pain swallowing food for 3 days now. I have taken every OTC medicine possible including a bottle of Mylanta, several glasses of baking soda and water, TUMS, Pepcid, and Zantac. I am a healthy 30 year old female. I have read your article and am wondering if I didn't swallow the antibiotic completely and it dissolved in my esophagus or if I am having an allergic reaction to a test that was performed. I'm going to take some Benadryl now just in case it will provide some relief. I can't wait until Monday when I can call on my doctor and make an appointment. I think this is the most pain I can remember feeling.

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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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