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S_J_L

Member Since 14 Apr 2008
Offline Last Active Mar 26 2010 03:55 PM
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#597150 Far Too Underweight, Possibly Refractory?

Posted by S_J_L on 07 March 2010 - 02:03 PM

Thanks for your posts, yes i have eliminated all those sources of gluten.

For some reason there is a '-1' at the bottom of the post, how do i get rid of it haha
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#597013 Far Too Underweight, Possibly Refractory?

Posted by S_J_L on 06 March 2010 - 07:07 PM

Hi everyone,
I haven't been on here in awhile, but i appreciate your opinions on the following.
I was diagnosed with celiac disese two years ago by blood tests and biopsy. I was told that i had subtotal villous atrophy.
I went fully gluten free, and did improve abit, but it seemed slow. I did have abit more energy, and my constipation went away within a month. Initially, my tissue transglutaminase went down from 164 to 40 within 6 months. However, for the last year and a half, this has stayed at 40 (tested about 3 or 4 times). For the last two months i was incredibly ill. Everytime i ate food i wanted to vomit, i woke up in the night wanting to vomit, constipation returned, and i actually began to vomit. I lost 3kg in two months and im now even more severely underweight-47kg, 5'8, female, 22years, bmi approx 16. I haven't changed my diet at all (except increasing calorie count), i had a lot of blood tests, which were all normal (except celiac ones), and had faecal tests for bacterial infections, but that was normal too.
I am currently waiting for another endoscope after seeing the specialist. The specialist wasn't too sure what was wrong from just talking to me but he didn't think it was another intolerance. He said that there is a slight chance that i may have refractory celiac disease. I know that this is bad if that's the case.
What do you guys think?
Does anyone know anything about refractory celiac, and what are the chances of me having it?
It really is impossible for me to gain weight, ive never had a bmi higher than 16.5/17 in all my life!
Im starting to feel better again, but was the last two months some sort of flare up?
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