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Ee And Celiacs Disease

bear6954

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bear6954 Apprentice
bear6954
Posted

My two year old was diagnosed with celiac disease and EE last May so I am very familiar with the GI side of celiacs disease. Over the years I have had strange things happen in which no doctor can explain and I wonder if it is related to celiacs disease and EE. I had an endoscopy done in may also which was negative for celiacs and EE, but I am DNA positive.

About 10 years ago I began to have heart palps (like a skipped beat). I had the holter monitor on and the heart dr said there was nothing wrong with my heart and that is was life style causing it. At that time I noticed that everytime I ate bread I would have palps. My family dr and heart dr both said it was not related. Shortly after the palps started, i had a hard time breathing and swallowing. It was to the point that I went to the ER twice because it felt like I could not breath. It felt like something was in my throat area right near the top of my breast bone (in the area of the thryiod). They did thryiod test and they were all negative. About a 2 weeks after the throat thing, i began to get chest pains on the right side of my chest so bad I thought I was going to die. My family dr finally put me on an antacid which helped with the chest pain. He took xrays of my throat - nothing wrong. ENT numbed by throat and shoved a tub down and and saw nothing. After about 4 weeks of thinking I was going to die my family dr put me on steriods and all my symptoms went away.

Every once in a while, I have the heart palps and I can feel that thing in my throat. It makes me want to swallow all the time to clear what ever it is away. It lasts a day or so then goes away.

I have also had issues with nausea after eating and in the morning. I figured it was hormones. The nausea comes and goes during the day, but I have never vomited from it. I was diagnosed with gastritis at my endoscopy.

Does any of this sound like celiacs disease or EE? What exactly does EE feel like, how long does it last etc? My son is only 2 so its hard to get answers from him on celiac disease and EE!!!!! Thanks for your help. Buy the way, went gluten free to see if my nausea would go away. I have been gluten-free for 3 days and feel wonderful and have lost 3 lbs!

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mommida Enthusiast
mommida
Posted

My daughter was diagnosed with "probable" Celiac at 17 months and EE December '08 at the age of 6.

EE is supposed to feel like severe GERD. As you know part of the treatment is to have steroids to heal the damage, and it does seem to clear up some of the symptoms. You did not mention if there were any biopsies taken during the endoscope. Part of the problem getting EE diagnosed is the eosinophils are not always visible during the scope and normal looking tissue has the eosinophils laying deeper in the biopsy sample. I know what you mean about finding more information, and chatting with an EE adult. I am in the process of starting an EE online chat room. I have my domain name and am starting the site set -up tonight. :) My daughter has been vomitting and complains her whole stomach hurts. An adult with EE reccomended popsicles and frozen banana chips for easing the pain. It seemed to work wonders for my daughter.

I was having heart palpatations and a feeling of something stuck in my throat before I was finally diagnosed with Hashimoto's thyroiditis. You need to be tested by an Endocronologist. You need to have thorough testing done because auto-immune thyroid disease has a connection to Celiac Disease.

codyb87 Rookie
codyb87
Posted

I've had a bit of experience in that area. I am still going through testing to see if I have celiac but about 3 weeks ago I went to the hospital one night after what seemed to be something caught in the back of my throat and I had to swallow a lot as well. They did the small scope thing as well and found nothing but a scratch and no swelling. I panicked a lot that night in thinking it was cutting off breathing but it really wasn't.

So I thought this was just me choking on something that night and didn't think much of it afterward. That next morning after, I ate something and the same feeling happened, so I calmed myself down and realized that it wasn't blocking off my airway but merely making some sort of block in my esophagus.

This happened on and off for about 2 weeks until one day, I noticed that it happened only on days that I ate a banana (I have been keeping a food diary for keeping track of gluten).

So since cutting out bananas I haven't had serious blocking, yet every once and a while I get a weak swollen throat so I am going to be talking to my doc about it soon to get tested for EE on the safe side.

I have read that EE can be allergy related and often happens when you get an autoimmune disorder (celiac) so maybe try and keep a food journal and see if it's something your eating.

Also there is a good EE website for more info.

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Good luck!

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