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Is genetic testing worth it

pokey449
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pokey449 Enthusiast
pokey449
Posted

I’ve basically been told I “might” have celiac. The only clue is an endoscopy showed mild villi blunting. Serology was negative. I asked my GI doc if a genetic test would confirm a diagnosis. He was not that enthusiastic that it would. I requested the test which he granted but I just found out it costs $212 and Medicare may not cover it. As far as I know no one in my family has ever been diagnosed with celiac so I’m wondering if it will be a waste of $$. Wanted to know what folks here experience has been with the HLA  test for celiac?? I’ve been on a gluten free diet since I got diagnosed and treated for SIBO. Supposedly we knocked the SIBO but I’m still feeling rotten and celiac seems to be what we’re hanging our hat on. But as I said I’ve been on a gluten free diet for 6 months and I’m still not feeling well. So wonder if the genetic test for celiac is justified. Thanks 

pokey 

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Scott Adams Grand Master
Scott Adams
Posted

Over 20% of the population have the genetic markers for celiac disease, but only ~1% get it (~12% have non-celiac gluten sensitivity). Also, not all labs will test for all known genetic markers, and new ones have been found in the last few years. It's possible that you will spend the money and still be exactly where you are at now. The best hope is that they would find no markers for celiac disease, but this many not rule out NCGS.

If money isn't an issue I'd probably just do the genetic testing if I were you, but it may not give you the answer you seek.

pokey449 Enthusiast
pokey449
Posted
  • Author

Scott. Do I understand that a negative HLAQ8 test does not mean that I’m not gluten sensitive, but  at least it rules out celiac??? and a positive result does not guarantee I have celiac?? I just have the marker??

Scott Adams Grand Master
Scott Adams
Posted

This article, although older, is helpful:

 

pokey449 Enthusiast
pokey449
Posted
  • Author

thanks. I interpreted the article as a negative result doesn’t necessarily mean negative especially if the lab doesn’t test for both subunits 

I should mention I had an abdominal CT recently that didn’t show anything out of the ordinary for my small bowel or colon. No dilation, lymph nodes or fluid associated with either 

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