Celiac or not?

[Lizzielou]

I need advice with my diagnosis (or lack of) please. 

I have a history of Ulcerative Colitis and during one of my recent colonoscopy they found villus atrophy and crypt hypoplasia. I also have a history of reactions to gluten foods but had previously tested negative for celiac. So my gastro had me tested for the celiac gene and that was negative. So I don’t have celiac disease. However every time I eat gluten I also have an autoimmune response which can be measured by a positive ANA blood test. 

My gastroenterologist has prescribed a gluten free diet and just shrugs and says that I probably do have celiac disease. 

I don’t like not knowing what is going on and I wondered if anyone else has this bizarre set of test results? I’ve googled like mad and can’t find anything about it. 

TIA

[tessa25]

Have you had the full Celiac panel done?

The full celiac panel includes:

TTG IGA
TTG IGG
DGP IGA
DGP IGG
EMA
IGA

You have to be eating gluten daily for 12 weeks before the blood test. A positive on any one blood test along with your villous atrophy confirms a celiac diagnosis.

[Lizzielou]

I’ve had the IgA but not the others while I was still eating gluten, and it was normal. I am Negative for the gene so then I can’t have celiac right? Yet I have other autoimmune markers when I get ‘glutened’ and the initial gut damage too.

[tessa25]

Genetic testing isn't 100%. And many people with celiac only test positive on one of the blood tests. So you can still have celiac.

[Lizzielou]

Oh that’s interesting, I was under the impression that the genetic test was quite trustworthy.

[GFinDC]

We have members on the forum who don't have the usual gene markers but do have celiac disease.  There are also many people walking around with the usual genes who don't have celiac disease.  There be more genes that can affect celiac than what we know at the moment.  They don't know everythi9ng about celiac disease yet.

[cyclinglady]

Yeah, like remember they used to say that celiac disease affected just Northern Europeans?  Now India has the most celiacs and China is now starting to report it.  

We are definitely still learning about celiac disease!