Patient Comments: Eosinophilic Esophagitis - Experience

Please describe your experience with eosinophilic esophagitis.

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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Comment from: M.L., 45-54 Female (Patient) Published: September 26

I just found out today that I have EE. I've been having gastric reflux for a couple months and then had a couple episodes of feeling like something was stuck in my throat. Initially, I was prescribed Prilosec but am now on Protonix. It's helped but has not entirely eliminated the problem. Two weeks ago, I had an endoscopy and had my follow-up appointment with my gastroenterologist today. He had taken tissue samples to biopsy during the procedure. The biopsy was + for EE. He prescribed Flovent, which I just dropped off at the pharmacy. I also am going to be seen by an allergist next month for extensive allergy testing. I do suffer from a lot of sinus drainage that I've been treating with a neti pot to cleanse my sinuses as suggested by my family doctor. The sinus washes have been very helpful in reducing my sinus congestion but has not eliminated it entirely. My doctor thinks the EE may well be caused by a food allergy. I am hoping the Flovent will be helpful and am hopeful the allergist will be able to identify a cause for my EE. I just hope it's not a gluten allergy because I love bread and pasta.

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Comment from: ufgatoralum2004, 25-34 Male (Patient) Published: September 26

I am a 26 year old male who just today was diagnosed with EE after 6 years of trying to figure out what was wrong with me. The symptoms began when I was in college. About every 2 months or so I get food stuck in my esophagus and on every occasion I have to spit it out. Usually I can go right back to eating and drinking, but in some instances I have been unable to swallow for a few hours after having an episode. About a month ago, I finally had an episode that put me in the hospital. While on a weekend vacation, I got a piece of steak stuck and spit it out as normal. However, I was unable to swallow again, even my own saliva, for 3 days. I became severely dehydrated and lost 20 lbs. Once my esophagus opened back up I went through a series of barium swallow tests and a couple EGDs for them to finally come to this diagnosis. I have to say I am relieved just to finally know what is wrong with me. For those of you already being treated with the fluticasone propionate, has anyone had any bad reactions to it. I have read that it can cause thrush, a white fungus in your mouth. I am relieved to have my problem fixed, but I am not too excited about the possible side affects.

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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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