Patient Comments: Eosinophilic Esophagitis - Experience

Please describe your experience with eosinophilic esophagitis.

Comment from: Sian, 45-54 Female (Patient) Published: June 11

I have just accidentally stumbled upon this article about eosinophilic esophagitis and for the first time have found something that accurately describes my symptoms of approximately 20 years. Usually, it is within the first couple of mouthfuls of food that my attacks occur and never with puddings! I get the feeling of choking, increasing pain in chest, dizziness and what feels like a huge amount of saliva. At this point it is extremely difficult to even swallow water. Afterwards, I feel a bout of tiredness. My husband and I have worked out that if he slowly and firmly rubs my back close to spine in area that I indicate each time it happens, then this dissipates the pain; I feel a sort of slow bursting of a bubble feeling and the problem calms down. Contrary to all sorts of advice, I also find that drinking a glass of ordinary sparkling water (not sugary, flavored) before a meal seems to stop the attacks occurring, which might relate to reflux, but everything else sounds like eosinophilic esophagitis. I was once given coca cola during an attack and the result was frightening. I thought I was going to choke and die (not being a drama queen - this was an extreme reaction). My father, 79 years old, also suffers with the same symptoms. I have been tested by various specialists (videofluoroscopy, barium meal, electrodes on toes, MRI, etc., all advised by doctors, not my request) and told that I have a form of reflux, but not a recognized one.

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Comment from: WorriedMom, 7-12 Male (Caregiver) Published: May 27

My son was diagnosed with eosinophilic esophagitis (EE) when he was 6 years old. We did the steroids and had the allergy tests. His allergy test did not show anything other than the medical tape they used. He is now ten and can't swallow steak, ribs and those sort of things. He does ok with chicken. He also has a cough that doesn't go away. He is scheduled for another endoscopy in June. I'm sure it is his EE again. He is on Nexium to try and see if it will help. But, I think we are back to square one.

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Comment from: tejasg, 55-64 Male (Caregiver) Published: April 09

As a 63 year old gastrointestinal physician with reflux symptoms since the age of 20, I was convinced that GERD was my diagnosis. Prescription with proton pump blockers such as omeprazole would help. I also have a host of food allergies, including legumes, peanuts and walnuts. After an endoscopy with biopsy 2 years ago, I was diagnosed to have EE (eosinophilic esophagitis). I was surprised since I avoid all foods I am allergic to. I had started consuming cashews as a 'healthy diet' a few months prior to my gastroscopy. I knew I wasn't allergic to cashews, and could not figure out why my GERD symptoms had worsened after beginning my cashew diet. Looking at the label, I realized that the cashews had been roasted/prepared in peanut oil. I stopped eating that brand of roasted cashews and have stopped using omeprazole since my symptoms have disappeared.

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Comment from: Nate M., 19-24 Male (Patient) Published: March 06

I am 21 years old, and I was diagnosed with eosinophilic esophagitis (EE) two years ago when I lodged a chunk of beef in my throat. I've had problems with swallowing from at least age 10, but never had something stuck in my throat for more than 10 minutes until my episode at 19. I've always made sure to have liquid with meals and am not aware of any food allergies, so I am as yet uncertain to what foods may cause the problem. I also had an incident last year where I had meat stuck in my throat for 17 hours. Luckily, it dislodged itself in the emergency room waiting room. My pain and panic endurance are higher than average after years of this experience, and at least I drink more water than otherwise.

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Comment from: Sailor girl, 35-44 Female (Patient) Published: March 02

I am a 44 year old female that was diagnosed with eosinophilic esophagitis (EE) 10 years ago after going to the emergency room (ER) with food impacted in my esophagus. After having an endoscopy with dilation and biopsy my gastroenterologist started me on a regimen of 40 mg omeprazole and Flovent swallowed, not inhaled. This seemed to help with my symptoms but I still continued to have swallowing problems and had to have the esophagus dilated several times. I was then referred to an allergist who found out I was allergic to peanuts, cashews, wheat, oats and pears. These are things I had eaten all of my life and had no idea I was allergic to. Since avoiding these allergens and continuing with my medications my symptoms have greatly improved. I had a routine endoscopy last fall and everything looked good. No dilation needed. I have two sons ages 17 and 10 who are both now exhibiting signs of this disease.

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Comment from: trainerboy, 25-34 Male (Patient) Published: December 10

I am 31 years old and was just diagnosed with EE (eosinophilic esophagitis). Since a teen I had issues with swallowing food and pills and always needed a lot of liquid when eating. There isn't a worse feeling than knowing you're probably going to need to force yourself to vomit up some stuck food. I procrastinated and didn't seek treatment until one night while eating steak my esophagus tore because it was less than 8 mm in diameter at this point. Don't procrastinate on this. It could save you a few weeks in the hospital and USD 65K, and maybe your life.

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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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