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Member Since 14 Apr 2008
Offline Last Active Mar 26 2010 03:55 PM

Topics I've Started

Far Too Underweight, Possibly Refractory?

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?

Feel So Sick, Please Help

07 November 2009 - 10:09 PM

Hi i am not sure what the problem is....

I have celiac disease and have been gluten free for about 1.5 years. I went out for dinner at someones house and they said the curry we ate didn't have gluten in it. About a day later i started feeling sick...nausea, stomach cramps, passing bowel motions 3 times a day (not normal for me). I don't know if i have been glutened or not as i just usually get a headache when i have been. Maybe its coinceidence and ive picked up a bug.
The problem is i have no appetite now and feel like vomiting everytime i eat. I am concerned cos im already extremely underweight.

Any ideas?


07 September 2009 - 12:39 AM

Hi everyone.

I was wondering if other people may have some insight as to what is wrong with me!!

I was diagnosed with celiac disease about 1.5 years ago. My symptoms were extreme tiredness, severely underweight and constipation. My tissue transglutaminase was intitially 164 (normal<20). Then over 6 months later it was 38, and now it is about the same, no change!! However, my IgA was like 0.5 or something. The IgA test came back first and the doctor was really happy as he said that test shows i have been following the diet well. The tissue transglutaminase later came back, showing no change over the 6 month period.
Assuming i havnt been eating gluten (i have been careful), is there any other explaination for the 'no-change'?
Its just that i have been tired for alot of my life and it seems a little worse lately. Are other auto-immune problems likely, and if so what??? (I have never had deficiency problems except for iron.)

I still only have a bmi of 16. I thought this would have changed

Any Ideas? Really Need Some Help

16 May 2009 - 02:19 AM

Hi everyone,

Im a 21yr old female and have been gluten free for over a year now. Was diagnosed as celiac by blood and biopsy (subtotal villous atrophy). I am 5'8 and was only 95lb (43kg) when diagnosed. Ive gained some weight, but not enough, im about 107lb (48.5kg). My BMI puts me as being severly underweight, and i think it is this that makes me really tired. My bloodtest results are fairly good now, but i havn't been putting on any weight in the past 6 months, only early on in the diet. I don't think i have other intolerances either.
My family doctor said to my mum that he doubts i'll get any bigger :( I thought that i would be ok once my intestine had healed, but obviously not.

Help please

What Is 'subtotal' Villous Atrophy?

03 April 2009 - 11:56 PM


My endoscope showed i had subtotal villous atrophy. What does this actually mean- is it early or late stage celiac disease etc? This was about a year ago, and my tissue transglutaminase was 164 (below 20 is normal). Now it is 36 after the gluten free diet. Should this be below 20 by now?
Im still having weight issues, ive only put on about 3kg since going gluten-free. I have a bmi of only about 16 (im 5'8), dispite eating quite well. I am, female, 21 years old.
Any ideas??
My family is thin too, but not underweight.
I once had a chest x-ray and the doctor was kinda shocked at how super-fine boned i am-they thought i had Marfan syndrome for awhile cos i also have heart problems and the long 'spidery' hands lol. Do you think that having celiac disease would have done this to my bones or is it just genetic?? I think i got my first celiac symptoms at about 8, when i became chronicly constipated. When i went through puberty i went bone-thin rather than putting weight on.
My stomach has also been really acidic lately but i think this is due to stress.

Sorry for such a rant, I just want answers

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