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New to gluten diet, are these things normal?

Rianabow
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Rianabow Newbie
Rianabow
Posted

Hi everyone, 

I'm new to the gluten free diet. So I've suffered with belly pains for a while, doctors thought it was acid so I took the pills, they settled the pain but only masked the problem. My nana, and my mum are celiac, and they constantly told me you probably have celiac disease. I went to the doctors had the blood test what showed that I didn't. Anyway I thought I will try gluten free diet see if it is, 3 weeks ago I started. No pains, no bloating, nothing I've never felt so good. I went out to the fish shop a week ago and stupidly ordered gravy and chips, me thinking no gluten, how wrongwas i. The pains was like labour, i literally thought i was going to pass out. So my question is am I celiac? 

I would really appreciate your opinions. Thank you xx

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trents Grand Master
trents
Posted

Welcome to the forum, Rianabow!

First, from your use of the terms "mum" and "nana" I would assume you live in the UK. If so, I am aware that the blood testing for celiac disease that doctors there usually do consists only of one celiac antibody test, namely, the tTG-IGA, rather than a "full" celiac panel which would include several other tests. Can you confirm this? Do you know what test or tests were run? The reason I bring this up is that, although the tTG-IGA is the single best test to run when checking for celiac disease, it can and does miss some people who actually do have celiac disease who would have thrown a positive on other tests.

Second, had you already cut back on gluten to a significant degree when the blood test was run? If so, you would have undermined the test results.

Third, even if you don't have celiac disease you could have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease and also requires complete abstinence from gluten. There is no test for NCGS. Celiac disease must first be ruled out. The difference between them is that celiac disease does damage to the villous lining of the small bowel but NCGS does not. However, some experts believe that NCGS can be a precursor to celiac disease.

Rianabow Newbie
Rianabow
Posted
  • Author
1 hour ago, trents said:

Welcome to the forum, Rianabow!

First, from your use of the terms "mum" and "nana" I would assume you live in the UK. If so, I am aware that the blood testing for celiac disease that doctors there usually do consists only of one celiac antibody test, namely, the tTG-IGA, rather than a "full" celiac panel which would include several other tests. Can you confirm this? Do you know what test or tests were run? The reason I bring this up is that, although the tTG-IGA is the single best test to run when checking for celiac disease, it can and does miss some people who actually do have celiac disease who would have thrown a positive on other tests.

Second, had you already cut back on gluten to a significant degree when the blood test was run? If so, you would have undermined the test results.

Third, even if you don't have celiac disease you could have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease and also requires complete abstinence from gluten. There is no test for NCGS. Celiac disease must first be ruled out. The difference between them is that celiac disease does damage to the villous lining of the small bowel but NCGS does not. However, some experts believe that NCGS can be a precursor to celiac disease.

Hello, thank you so much for commenting. Yes I am from the UK. I've just checked me doctors note and it says- ( IgA anti-tTG ) so I'm unsure what test. 

I had eaten gluten and was eating normally before the test. 

X

trents Grand Master
trents
Posted

That would be the tTG-IGA.

knitty kitty Grand Master
knitty kitty
Posted

@Rianabow, 

Was a total serum IgA test done?  This test checks to make sure you're producing sufficient IgA, while the tTg-IgA tests for a specific sort.  Some people for various reasons don't produce sufficient total IgA, and hence test negative on the specific tTg-IgA.  Anemia and Diabetes can cause false negatives on tests.  

I had a false negative blood test result, so I had genetic testing done.  Turns out I have two genes for Celiac Disease.  

Hope this helps!

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