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Genetic Testing For Children?

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I was recently diagnosed with celiac disease. The tTg, EMA & DGP tests run on my four young daughters were negative, but I'd like to have them genetically tested so we know which, if any, to monitor going forward.  Their pediatrician said the only reliable genetic test is the HLADQ2/HLADQ8 blood test. 

 

Is it true that HLADQ2/HLADQ8 are the only reliable genetic tests?  Are there any commercially available genetic tests that are reliable?  I've read that insurance companies sometimes use such test results to deny future coverage, so I'm thinking there might be some benefit to staying "off the grid."  Thanks

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30% of the population will have one or two of those genes (DQ2 and DQ8) but only about 1% of the population has celiac disease. Having the genes just meas that you have a greater chance of developing celiac disease compared to the rest of the population. You can have celiac disease without those genes. I know of at least one board member who has celiac disease but not the genes. The genes are found in about 95% of celiacs though.

 

My rambling is basically to say that even without the genes, the kids could have a chance of developing celiac disease. Without knowing the genetics, first degree relatives od celiacs have about a 10% chance of developing celiac disease. If your kids do continue to eat gluten, they should be retested every couple of years as celiac disease can develop, or finally reveal it's presence, at any time of of life. If your kids have symptoms, and test negative, you may want to make them gluten-free for 6 months to see if they improve. It could be non-celiac gluten intolerance (NCGI), or it could be celiac disease - those tests aren't perfect.

 

My three kids were tested and were all negative but two of them had some symptoms (nothing severe). I made the family gluten-free (gluten is not nutritionally required - it's a food of convenience now a days) and their health improved. Just something to consider.

 

Best wishes.

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My son had the genetic test and was found to have a "low probability" . . . this led the doctor to conclude that he DID NOT have celiac disease (no classic symptoms, target size/weight, positive and negative blood test results)   His doctor could not explain the positive blood tests.  Said it might be a "lab error."   By that time, I had tested positive for Celiac too, so we found a new doctor.  He had an endoscopy and was found to have extensive damage.

 

So this is a case where he DIDN'T have the genes, but DID have celiac.  His new doctor (at the Celiac clinic at Children's Hospital Boston) doesn't even do the genetic tests because it doesn't really tell you anything.  You may or may not develop celiac if you have the genes, you may or may not develop celiac if you don't have the genes.  Waste of time and money and potentially misleading.

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