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CeliacMommaX2

Genetic Testing for celiac

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My husband and I have been convinced to go through genetic testing (if not too expensive).  I have a few questions...

Do I ask the doctor's office or call our insurance about how much it will cost?

If both my husband and I have both genes, does that mean all of our children will also have both genes?  We already have 2 with celiac, so it seems our odds are high...  I wonder if we would need to bother getting the non-celiac kids tested if that was the case.

Is there any reason to test a person who has already been diagnosed with celiac?  (probably a stupid questions, but I'm asking anyway :) )

Thanks!


Mom to 2 young kids with celiac, diagnosed March 2015

*Gluten free household

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I'm not an expert by any means but I'll tell you our experience. My three year old was diagnosed based upon a very high ttg level and a positive genetic test. My husband got tested and has the gene but hasn't triggered celiac. My 7 year old has the gene but not celiac. My 5 year old doesn't have the gene. I haven't been tested because I figure it's coming from my husband's side, but I might still be tested just in case when the baby is old enough to be tested. I questioned our gi dr about the combination of genetic markers for the three of them with the gene. He said he would look over the genetic tests to see what their individual combinations could tell us. He did confirm my question about different genetic combinations raising or lowering the chance of triggering celiac. The advice we got was to monitor all immediate family members (blood tests every two years or sooner if showing signs of celiac). We chose genetic testing so we could potentially rule out having to test some kids continually. We just requested it from our regular dr and didn't contact insurance ahead of time. If someone is already diagnosed with celiac you wouldn't have to do genetic testing on them. Hope this helps a bit

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