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Positive Abs, Negative Genetics

slf8

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slf8 Newbie
slf8
Posted

Hello,

 

I was diagnosed with ulcerative proctitis in 2003 while pregnant with my third daughter. In 2008 I had ulcers further up in the colon. My colitis presentation is not "typical" however, in that the inflammation is not continuous but rather spotty, but it is not all the way through the mucosa like in Crohn's. I do, however have all of the typical IBD symptoms (pain, blood, mucous, D, cramps), off and on, mild to moderate, thankfully never bad enough to land me in the hospital.

 

I switched gastroenterologists last year and he suspected that perhaps I had undiagnosed celiac disease which had contributed to my IBD. I had a celiac blood panel and these were the results:

 

Gliadin IgG 18.99 U/mL Positive

Gliadin IgA 11.29 U/mL Negative

TTG IgG      20.98 U/mL Positive

Total IgA    265 mg/dL

 

He did an endoscopy, though visual inspection saw some mild blunting of the villi, the histology was negative for celiac.

 

After being on a gluten-free diet for two months, I had another test:

TTG IgA 8.44 Negative

 

I also had the genetic test done and I was NEGATIVE for both DQ2 and DQ8.

 

I understand that often the blood test can be false negative when the genetics say predisposed to celiac. I think my case is perhaps unusual that I am borderline positive on the blood test, but negative genetically. Does this mean I am non-celiac gluten intolerant? And what does that even mean? I have been reading about "leaky gut". Perhaps if tested I would have antibodies to many other foods as well.

 

As a result of the negative genetic test, I went back on gluten. I actually felt great over the summer but now I am in a flare again along with quite a bit of esophagitis so I am wondering if that was such a great idea.

 

Thanks for your time.

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nvsmom Community Regular
nvsmom
Posted

Welcome to the board.  :)

 

I don't know much about genetic testing, never having looked into it myself, but I do know that there are a few people on these boards who have celiac and did not test positive for the "usual" genetic tests. I believe there are other genes that are linked to celiac, but I can not remember what they are.

 

Two positive blood tests is a pretty sure sign that you have celiac disease. So is the villi blunting (others around here will know more about this)... And so is the fact that your ttg test went down after being gluten-free. :( I would say it looks a lot like celiac disease.

 

If you want to be more sure, why not re-test yourceliac blood tests? You've been on gluten for some time, and are having symptoms again, so you might as well get it checked and see if your auto-antibody levels have gone up again.... and unfortunately I bet they have.

 

If you decide to skip re-testing, I would advise you to go gluten-free again in the very least. If your symptoms improve again (and give it a few months) then you have your answer.

 

Good luck in whatever you decide to do.

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