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Anyone With Neg Gene But Has Celiac?

krisb

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krisb Contributor
krisb
Posted

My 8 year old has been on a gluten free diet for about 3 years now. I know he feels better on the diet and he definitly reacts when he slips up. The only testing we did for him before was the antigen test and it came back way positive. He recently had the genetic test done through a genetisist and it came back negative. I'm still going to keep him off of gluten because I do feel he has a gluten intolerance. I was wondering if anyone else has celiac with a negative gene test. My older son tested positive to the gene.

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ShayFL Enthusiast
ShayFL
Posted

Im neg. for Celiac genes, but pos. gluten sensitivity. I have 2 gluten sensitivity genes according to Enterolab. But not the official Celiac genes.

Ursa Major Collaborator
Ursa Major
Posted

Scientists admit that they haven't found all the celiac disease genes yet. In other countries they consider certain genes official celiac disease genes that here they claim don't cause it.

There are some people with celiac disease who don't have the two 'official' American celiac disease genes. I guess your son may be one of them.

Good for you for keeping him off gluten anyway, you are doing the right thing for your son's health.

fedora Enthusiast
fedora
Posted

it is rare to have celiac without the main two genes, but definately possible. There are at least a couple of people on here with biopsy and blood confirmed celiac without the genes. There are documented studies proving that there are some people who get it without the genes. Also males are more likely to not have the 2 main genes

ravenwoodglass Mentor
ravenwoodglass
Posted

I was firmly diagnosed celiac in 2002. I have had DH since childhood. I had a fantastic resolution of a myriad of health issues, most autoimmune related. I didn't have my gene test done until I had been gluten-free for almost 5 years. By US gene standards I could never develop celiac because I don't have the genes. In other countries I would have been diagnosed celiac in childhood. Gene testing is NOT a reliable test to use to diagnose. We just don't know enough about the genes yet, most doctors don't even know there are now 7 more celiac genes recently 'discovered' and if you use the gene tests for diagnosis many of us will be missed.

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