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ktmlee

Tested Negative For Celiac Gene...

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I recently was diagnosed with late onset type 1 diabetes (at age 33).  My endocrinologist wanted me tested for Celiacs, after mentioning I've had IBS my entire life.  Here was the results:

 

Gliadin Antibody Iga - my value 47 (standard range <20) - High

Gliadin Antibody Igg, Ttg Iga, and Ttg Igg were all < 5 (standard range <20) - Normal

 

My doctor said the high value was on the "less specific" test, but may still have Celiac's.  I was then referred to a Gastroenterologist who tested me for the Celiac gene HLADQ2 &HLADQ8, both of which just came back as negative.

 

Now I'm scheduled for an Endoscopy in 3 weeks for final confirmation.  But, based on this information, is it likely that I do NOT have celiacs?  

Edited by ktmlee

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Most people with celiac disease are DQ2/DQ8 positive, but it is possible to have it without the genes (depending on the source I've seen that between 1 and 4 percent of celiacs do not have of the main genes). I was diagnosed 4 years ago with celiac disease, then found out after the fact that I am DQ2/DQ8 negative. I am double DQ7. So is my mom, who also has celiac disease. There were a few scientific posters at the International Celiac Disease Symposium in Chicago in Sept. showing that celiac can occur in non DQ2/DQ8 individuals as well. Hope this helps!

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I recently read in Dangerous Grains that only 90% of celiacs have the DQ2 gene and 94% have the DQ8 gene (I believe those were the numbers). It is very possible to have celiac disease without the DQ2 or DQ8 genes, most celiacs do have it though.

 

The AGA IgA is not used very often now a days because it is not a very sensitive test. It is not solely specific to celiac disease either; it is thought by some to occur in those with non-celiac gluten intolerance (NCGI) as well. Pages 10-12 of thios report discusses the tests: http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 

Because you have diabetes, if you have gluten sensitivity it is probably in the form of celiac disease; diabetes is the most common partnering autoimmune disease to appear with celiac disease. :( I would guess it is celiac disease.

 

Good luck with the biopsies. i hope you get some definitive results. Kepp eating gluten until the test is complete.

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Thanks for the replies.  It makes sense why my doctor still wants the endoscopy then, since it could still be Celiacs.  Forcing myself to eat enough grains for this test has been hard though, since it doesn't help my blood sugar.  But, I guess I'll know in a few weeks time, and can go bread-free again after that!  Thanks again.

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