Patient Comments: Eosinophilic Esophagitis - Experience

Please describe your experience with eosinophilic esophagitis.

Comment from: Adamo41, 35-44 (Patient) Published: September 30

I have eosinophilic esophagitis; was diagnosed earlier in the year. I am on pantoprazole and Flovent. My symptoms went from feeling like I had major chest pain and a constant burning in my throat, to feeling better and then now I feel like my throat is constricting and it won't stop day or night. I've tried the elimination diet for a week at a time with each food group and no success. I wonder if there is anything out there that would make the constricting feeling go away. I feel like I am going to throw up and I can't breathe.

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Comment from: Millakaus, 35-44 Female (Patient) Published: September 17

I was just diagnosed with eosinophilic esophagitis. I had trouble swallowing for years. This past May I ruptured my esophagus and almost died. Prior to this rupture I had several scopes and not one doctor could find anything wrong. I finally got a team of doctors and am glad that I have eosinophilic esophagitis as opposed to the alternative diseases that could have caused my rupture. I still need to see an allergist and find out what I'm allergic to. Right now my doctor told me to eliminate wheat and dairy. Good luck everyone. This has been a long road for me and I now have a diagnosis and a start of a plan.

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Comment from: BuckeyesFan, 19-24 Male (Patient) Published: July 24

I don't actually know if I was diagnosed with eosinophilic esophagitis (EE) but from what I read here and from the blood work I had done it seems like it is what it was. I had two separate choking incidents within about 3 weeks, thus I finally decided it was time for the doctor visit. I had an endoscopy done and my lower esophagus was actually way smaller than it should be and they had to inflate it. I am not exactly the same as other EE patients but I have been started on a regime of omeprazole which so far seems to be working.

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Comment from: Julien, 35-44 Male (Patient) Published: July 15

I'm 35 and I was diagnosed with eosinophilic esophagitis EE a few months ago. I've just had some allergy tests done and the result is that I'm allergic to milk. So I've got to go on a dairy-free diet for a month and have another endoscopy to check if it makes a difference. So no more milk, chocolate, cheese, etc., for me. I'll miss it but I'll just have to get used to it. I believe I've had EE since I was a kid. Now that I think back on it, I remember getting a feeling of having something stuck in my throat, especially after eating some types of cheeses. I knew there was nothing stuck but it was uncomfortable and could last for 20 to 30 minutes, as if my throat was swelling on the inside. Every once in a while I would get a piece of food stuck. I didn't choke, could still breathe and talk normally but could not swallow anything at all, even liquid (including my own saliva). When I was younger, the food blockage often dislodged after a few minutes, usually when I forced it down with another piece of food, or by trying to swallow water. My parents always put it down to me not chewing my food enough. But as the years went on, when something got stuck it seemed to be stuck for longer (sometimes as long as 30 or 40 minutes and it was really uncomfortable. Until last October when I had my worst episode ever and I had food stuck in for 48 hours. As I couldn't swallow, I couldn't eat or drink anything for 2 days. I had to go to Accident and Emergency to go on the drip as I was getting quite dehydrated. And then finally after 2 days it went down on its own (10 minutes before I was due to see a gastroenterologist). It's after I went for a couple of endoscopies that the doctor diagnosed me with EE.

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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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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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