Are You Predisposed to Celiac Disease?

by | G+ Amy Leger

I have a daughter with celiac disease, so I figure I am likely predisposed to it right? I haven’t done any genetic testing. But, in my case, when my father’s side has had three cases of celiac and two cases of colitis, I figure I must have the genetic markers for it. Whether it’s gut issues or another potential health issue you’re concerned about, sometimes you just want more information that could save you time, money and months or years of medical hassle.

Testing for Celiac and Beyond

There are several companies out there who offer personal genetic testing. But just yesterday, a company called Navgenics announced it can help you find out about a predisposition to celiac as well as heart disease type 2 diabetes and cancer. Navgenics partnered up with a physician’s group, MDVIP. Together they say you will get your testing done and then work with your physician to understand your genetic risk factors and develop a personal “wellness course to decrease their overall risk, delay…or prevent [the disease] all together”, Navgenics reported. Kind of a big promise — however, they seem to have the entire spectrum results in that quote.

Genetic testing: cost, insurance

I posed a few questions to the company today to try and get more consumer information that hopefully would help anyone who’s interested make a better decision about this testing and whether it’s right for you. Jeremiah Hall Senior Vice President of Feinstein Kean Healthcare told me today the full-service tests cost $2,500 per person. While it is not covered by insurance, Hall recommended checking to see if your health care flexible spending account might reimburse you.

One concern I have is whether insurance companies will consider any results as a “pre-existing condition”. Hall cited the Genetic Information Non-Discrimination Act (GINA) as offering at least some protection. Hall says GINA “…makes it illegal for health insurance companies and employers to request genetic information or use it for coverage decisions”. But Hall says, “…there is a loophole…where life insurance and long-term disability insurance companies are not barred.” He says there are no documented cases of this happening but “…it remains a theoretical risk and one that physicians and patients should openly discuss before undergoing testing.”

Shopping Around for Celiac Gene Tests

If this big test isn’t quite what you’re looking for, several families in our parents’ group have used Enterolab which focuses much more on gluten-sensitivity and celiac disease. The families I have heard talk about it seemed happy with the service and results. The cost may be less as well, but you would have to check on that.

Another good resource if you’re considering genetic testing for celiac disease is celiac.com which has a well-rounded look at genetic testing, how the test is done, what the labs are testing for, and what else you should know before spending the money.

For now, I don’t feel the need to have the testing done; I have enough funky gut genes in my family to prove enough to me that’s likely in my body somewhere. As far as finding out about any other genetic factors like heart disease? I think I’ll keep running, biking and taking preventative measures for now. But who knows, maybe I’ll change my mind someday.

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One Response to “Are You Predisposed to Celiac Disease?”

  1. Amy
    Thanks for posting about the genetic testing. I have been wondering about this since I attended a Celiac Conference last month. I was curious why the doc didn’t offer this to my daughter instead of the $1000plus blood tests for everything under the sun despite her brothers dx of celiac disease. Still no dx for her because she’s been gf so long she needs to do a gluten challenge diet.
    Wendy

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