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How Often To Retest Family Members?

Ginkgo100

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Ginkgo100 Rookie
Ginkgo100
Posted

My son Z was dx with celiac at age 12 months, in May 2011. Though he didn't have symptoms, I had a blood test done for my other biological son R, who was 4 at the time (test was negative).  I have a number of symptoms on the "list" (IBS, iron deficiency anemia, underweight, unexplained fertility problems, etc.), but my blood test was also negative. (Same thing for DH, who has a somewhat different list of possible symptoms.) None of us have had genetic testing (and we have no other family members with a celiac dx).

 

Fast forward three and a half years. R (now age 7) is having recurrent abdominal pains, constipation, and occasional severe joint pain (in his knees) that were attributed to "growing pains."  I know that while there is a genetic component to celiac disease, it's thought to be an acquired disorder. So should family members be retested periodically? Only if there are symptoms? How often for kids and how often for adults?  I also have a 7-month-old now. Assuming she doesn't develop noticeable symptoms, when should she be tested?

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bartfull Rising Star
bartfull
Posted

All first degree relatives should be tested once every two years. The baby, I'm not sure but I think you should wait until she's two?

 

Hey you guys with kids, let us know. :)

nvsmom Community Regular
nvsmom
Posted

I agree, first degree relatives should be tested every two years (for life) or as soon as symptoms are presented.  Babies and toddlers often don't test as reliably accurate as adults so make sure all the tests are run, especially  the deaminated gliadin peptides (DGP IgA and DGP IgG).  

 

If symptoms are present, but the kids test negative, it is possible that they have sero-negative celiac disease and should go gluten-free... Just something to consider.

 

Best wishes with the testing.

cyclinglady Grand Master
cyclinglady
Posted

Please have the full panel run! I was only positive on one of the tests in the panel. If my doctor had only ordered the TTG tests, I never would have been diagnosed!

My 13 year old tested negative but will get retested every two years or sooner if symptoms present.

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