Patient Comments: Eosinophilic Esophagitis - Experience

Please describe your experience with eosinophilic esophagitis.

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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Comment from: 19-24 Female (Patient) Published: September 17

I am a 21 year old female who was recently diagnosed with EE. This has been an on going problem through out my life but I always thought that it had to do with just taking bigger bites than i should be taking. My doctor is now confused however because my symptoms are the same as most patients but i have one more symptom that does not make sense. Along with a not being able to pass food properly i also regurgitate about 50% of my food. However I do not do this voluntarily. Does anyone else have these problems? I have had asthma my entire life and have had eczema multiple times through out my life which has been know to correlate with EE.

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Comment from: Terri, 35-44 Female (Patient) Published: August 26

I am a 36-year-old female, recently diagnosed with eosinophilic esophagitis (EE). I have had problems swallowing for more than 16 years. I have had three different barium swallows over the course of those 16 years, and the doctors only said that I probably had some type of stricture and gave no recommendation on how to fix the problem. I could not take large pills, or talk while I ate, or even participate in family meals, without getting food stuck, which caused severe pain until it came up or went down. I only suffered from heartburn during the tail end of my pregnancies. I decided to try one more time, and the doctor recommended an endoscopy. It was awesome: He found out I had a Schatzki ring, dilated it and took tissue samples that showed I had EE. The dilation alone fixed the big problem. I am sure my EE was caused by the constant irritation of food getting stuck, and or vomiting due to food getting stuck. I did have hay fever that I have been treated for, and I am on Flovent and Prilosec. I can now participate in family meals. I don't have to scout out the restroom in restaurants for emergency food problems. I am enjoying eating again.

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Comment from: Let me eat , 25-34 Male (Patient) Published: August 26

I am a 34-year-old male and started having difficulty swallowing in high school. I had been diagnosed with an esophageal web at the top of my esophagus and a ring near the bottom after a barium swallow in 2001. I was told the only treatment was periodic dilation. Nurses and office personnel often stated I was young for these dilation procedures. The dilations didn't really seem to help either. My health insurance changed and I wanted to try another doctor. This time he suspected eosinophilic esophagitis (EE) and performed a biopsy. I was diagnosed with EE and was given the Flovent inhaler with Fluticasone. I just started taking the medicine, and I am very hopeful.

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Comment from: Joe, 35-44 Male (Patient) Published: August 20

I am a 43 yr old male recently diagnosed with EE. I have had no recurrences in the six months since my dilatation and Nexium Flovent treatment. My first difficulty swallowing was at age 11. At 16 I had barium swallowed/x rays but nothing showed up. At 17 the radiologist had me swallow a marshmallow first then drink the barium--it showed a stricture. Over the next 25 years I would be dilated every 3-5 years. The last 13 years I was on Zantac. The symptoms (difficulty swallowing—typically, rice, tuna fish, etc., sticky things not pieces of meat) would return steadily over time until I would get dilated again. Six months ago I went to a new GI who immediately thought it sounded like EE and did the biopsy which showed the increased levels of eosinophils. It's nice to know the cause and hopefully further treatments will be needed less frequently

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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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