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Member Since 23 Sep 2009
Offline Last Active Dec 02 2012 11:00 PM

Topics I've Started

Diagnosed Celiac Disease 3 Years Ago, Still Not Getting Better

20 November 2012 - 07:06 AM

Hello All ! I just wanted to post a little story on what's happened in my past.

Firstly...My senior year in highschool (17 at the time, Male) One night i went to sleep and suddenly felt like I lost breath and started hiccuping non stop. I went to the E.R. and they said I looked fine except I had a sinus infection. Months passed and I was still having problems mostly with this feeling of shortness of breath. I then began to start getting stomach pains. Pains were just mostly really bad cramps and they would very in level on and off. After a year of these pains and multiple testing (Including a lot of breathing tests/asthma which i was fine with all of and told I had very good lungs) to seeing a GI doctor that ordered blood work for me. It was then he informed me that I showed sensitivity to Celiac Sprue and I got an EGD and Biopsy done which confirmed it.

I have been gluten free for about three years now. I have been trying my best on my own to stick to a clear gluten free diet and use gluten free products. My stomach was feeling better, but my breathing still felt the same until this last december in 2011 where I started getting bad stomach pains again.

I've gone through another 2 additional EGDs, Colonoscopy, Esophogram, Barium Swallow, Upper GI w/ lower GI follow through, Hida Scan, Food Emptying test and maybe more that I can't think of. Only thing thats shown is my damage villa and gasritis.

My symptoms have gotten worse though. Mostly having to do with my throat and mouth area. I started having difficulty swallowing and had a lot of burping/gas. My throat is always red and I always have white goop in the back of my throat and my tounge is coated and will sometimes get these spots over it and will feel really soar.

My GI doctor says Its reflux and so has my ENT. I saw a surgeon about possible surgery for such a problem, but when he looked over my tests he said there is zero evidence of such a thing occuring.

I can barely eat a lot of food that doesn't bother me and my throat and I'm taking 150zantac x2 and a 40mg ppi x1.

I'm losing weight because I can't eat much and weigh 117 pounds and I am 5-8"

Ontop of this I just found out I am in stages of osteoporosis and am actually about to get what I think is called a reclapse? In about 2 hours.

Has anyone had these sort of problems with Celiac Disease, or has anyone done anything that has helped them ?

At 21 years of age I just feel like my life has been cut short of who I once was because I always feel miserable.

I don't go out much because of my problems and its hard to enjoy anything.

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