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Genetic Testing

Mary5757

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Mary5757 Newbie
Mary5757
Posted

Anyone done genetic testing for celiac? My daughter has it and I'd like to have my son tested to see if he has the gene. My insurance doesn't cover it. How expensive is it? Is there an at home kit? Any experiences with it?

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taxlady23 Newbie
taxlady23
Posted

Anyone done genetic testing for celiac? My daughter has it and I'd like to have my son tested to see if he has the gene. My insurance doesn't cover it. How expensive is it? Is there an at home kit? Any experiences with it?

My son had genetic testing done for celiacs. Our insurance did cover it, but it couldn't be done at a regular lab, we had to go to the hospital lab that does the prometheus test for celiac.
cassP Contributor
cassP
Posted

i did genetic testing thru enterolab .. it was about 150$ im happy i spent the money!

1974girl Enthusiast
1974girl
Posted

If it would make a difference then do it. They did it on both my girls to try rule it out. It ruled it in. But.... Even though I know my younger dd has dq 2 I am still not gluten-free with her. 30% of the population has it, too. My celiac dd has both 2 and 8 so we are gluten-free with her despite no gi symptoms.

ravenwoodglass Mentor
ravenwoodglass
Posted

I found it interesting. My DD, who was both biopsy and blood work positive, had her's done and was told she didn't have the genes. Thus they said her diagnosis was a false diagnosis. I then had my genes tested. Turns out I don't have either one of the two most commonly tested for celiac associated genes either. I have a double dose of a gene that is recognized in other countries but not in the US. So if you want to have the testing done have it done but know that it can not fully rule out celiac if the gene tests are not positive for DQ2 or DQ8.

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

ravenwoodglass

Can you tell us more about the double gene?

My GI took bloods for genetic testing Monday, so I want to be ready in case it is negative. I am not sure which tests are done in the UK, but he was very clear his view is no genes no celiac.

He was very helpful and listened. I am always up for educating a doctor if necessary :)

Thanks

1desperateladysaved Proficient
1desperateladysaved
Posted

I had a genetic test from a lab in Sweetwater, Texas. I was very satisfied with the results and information they provided me with. I had both 2 DQ2 snf 2 DQ8. I was told that all of my children were therefore carriers of the genes. I also discovered that both of my parents have the genes. Most people could probably not discover all of that from the one test. I had 4/4 gene alleles for gluten intolerance. The cost was under 400 dollars and involved swabbing some cells from the cheeks with cotton swab, filling out paperwork and mailing it back to the lab. The genetic test plus my symptoms were used by my MD for diagnosis. ***

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MoMof2Boyz Enthusiast
MoMof2Boyz
Posted

I was told that since my ds tested negative for DQ2 an DQ8 that there is NO chance he can have celiac. hmmmmm...

jerseyangel Proficient
jerseyangel
Posted

I had the genetic test, ordered by my gastro. Insurance paid for it.

Cara in Boston Enthusiast
Cara in Boston
Posted

We had the test and based on the result, it led our original doctor to believe that my son did NOT have it. After we switched doctors and they did an endoscopy, he was found to be very positive. People with the genes don't always get it. People without the genes do get it. I'm not really sure how a test like that can be helpful.

Cara

shadowicewolf Proficient
shadowicewolf
Posted

not nessisarily. The doctors in the U.S. only test for those two. I've heard that outside of the States they test for more.

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