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Genetic Testing For Children?
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4 posts in this topic

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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    • I think the gene tests are accurate.  Not sure if thier interpretation of them is.   If you actually think have Celiac, you need to know that.  You  need to know how careful you must be.  You need a diagnosis to get gluten-free food in hospitals or nursing homes (if you can find one that does gluten-free food).  Because thsese "stool tests" are not medically accepted, it is unlikely that a real medical facility will consider you to have Celiac.   http://www.cureceliacdisease.org/faq/why-dont-you-recognize-tests-stool-tests-or-otherwise-for-gluten-sensitivity-that-are-currently-available-through-companies-like-enterolab-or-cyrex/
    • Why would your doctor order an endoscopy and check for celiac disease, but not order a celiac panel?  Had you been gluten free already?  
    • Thanks cyclinglady ... just wondering, do most of the people on this forum believe the Enterolab stool / gene testing to be non-trustworthy? Or are you just recommending a diagnosis from my MD so that she is also treating me with full belief/knowledge of my condition? I've been gluten free now for 2 weeks - by the time I get in to my doctor, she orders the bloodwork and I get to a lab it could be another 2 weeks before the bloodwork is done. From what I understand, just a month of gluten free eating could skew the results of the blood test. Supposedly, the stool tests are much more accurate. I hate to go backwards and start eating gluten again just so I can have a blood test done that may or may not substantiate the results of the stool / gene testing. I'm so confused ...
    • Try to stick to a whole foods diet.  Things like unseasoned stew, soup, etc.  Things easy-to digest, preferably not processed by a anyone except you.  Too often new celiacs start using gluten-free foods (cookies, bread, crackers).  Your body is not used to these grains and they often contain lots of junk.  For example, I react to Xantham gum.  It does not bother my gluten-free hubby, but it gets me every single time!   Did you read our Newbie 101 thread under "Coping"?   It contains lots of valuable tips.  Make sure those meds are gluten free.  Supplements too.   I hope you feel better soon!    
    • Here are the actual tests.   http://www.cureceliacdisease.org/screening/ Insist on the complete panel.  Let them know (your doctor) that your father had celiac disease.   Document in writing!  If you have celiac disease, your life can be improved.  All the things I attributed to aging were actually related to celiac disease.  It is never too late to feel well!  I am in my 50's but my Aunt iis 81.  We celebrate a Gluten free Thanksgiving every year!   Oh, my kid does not have celiac disease, but she is tested every few years even though she is symptom free!  There are silent celiacs.  My symptom?  Anemia.  No tummy issues.   Please advocate for your health.  Keep all records.  Doctors can not ignore written facts and requests.    
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