Patient Comments: Eosinophilic Esophagitis - Experience

Please describe your experience with eosinophilic esophagitis.

Comment from: Michelle, 25-34 Male (Caregiver) Published: February 02

My husband has this eosinophilic esophagitis. It's terrible. He is allergic to almost all fruits and vegetables. He can't eat healthy because of this problem. He's getting older and heavier as a result. The acid reflux medications don't really help. He needs an endoscopy every year or two to release stricture in his esophagus and break up scar tissue. I'm really worried that he will end up with cancer because of this. Now every time he gets sick, his sore throat and coughing are much more painful. It's frustrating that there is nothing they can do about it.

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Comment from: Katie, 19-24 Female (Patient) Published: October 27

It all started when I started having random bouts of severe chest pains that mostly occurred on my right side. After making multiple trips to the emergency room and having tons of bloodwork, no one could find out what was wrong with me. They first thought it was my heart or possibly a clot in my lungs. They even checked on my gallbladder and pancreas and nothing would show up. I finally visited a gastroenterologist to have my gallbladder checked and she decided that my symptoms were quite a bit different than the typical gallbladder/pancreas problems. I had an upper endoscopy done and sure enough, eosinophilic esophagitis showed up in the biopsy. I am now on Prilosec 20 mg and a Flovent inhaler for treatment. Symptoms have dramatically improved, but I still have days where my chest pain returns if I eat something I shouldn't have or if I'm under a lot of stress. Lately I was on doxycycline for a respiratory infection and it flared my acid reflux up so I'm going through some pain right now. I have quite a lot of food allergies so it's incredibly difficult to find out which is the trigger for the pain. The only thing I haven't ruled out is wheat, which I'm about to try going wheat free to see what happens. I'm a 20 year old college student so it's hard to keep the stress levels down at times, but I have noticed it flares up more when I feel stressed, which is aggravating because the pain stresses me out at times, which only makes things worse. Very annoying disease, but I'm so glad to have found a doctor who knows what's wrong with me. I wish the best of luck to anyone with this condition. It's not an easy thing to live with.

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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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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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