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Guest BERNESES

How Were You Diagnosed?

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Guest BERNESES

Sorry- I haven't used the poll option in awhile. Arrrggghhh! Please keep THIS as the post and disregard the other two. thanks, B

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Had to figuire it out for myself. The doctors just wanted to take my insurance company for a ride and pump me full of drugs.

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Diagnosed twice here actually.

First time, in my early 20's, after over a year of diarrhea, doubled over in pain, hospitalizations, etc. Dr. diagnosed celiac disease. Then, after almost 2 years on the gluten-free diet with no response, he started the "Okay, maybe it IBS, then maybe its Crohn's",and alas, the diagnosis roller coaster began.

Then, about maybe 4 years ago, after symptoms worsening and pain unbearable, was sent to a different GI. This time, bloodwork was available that confirmed it was indeed celiac. Biopsy showed my intestines were smoother than the inside of a garden hose. After a couple of years on the gluten-free diet STILL without positive reponse, (we are talking over a decade of permanent diarrhea).I was then sent to a professor at St. Mike's here in Toronto who specializes in celiac disease. He did a colonoscopy that showed collagenous colitis. We have tried several treatments so far, still with no success. First the bismol treatment (LARGE doses of Pepto Bismol for 8 weeks), budesonide (started out hopeful, then got worse again) , prednisone, all without success. Now he is trying me on Clonidine, which is a blood pressure medication (even though I have low blood pressure!) What we are hoping for actually is the major side effect of Clonidine, which is constipation. No such luck though.....

I go back to see him the end of March to see what our next course of action is.....

Karen

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