Genetic Testing

[lizard00]

Has anyone had genetic testing ordered by their doctor? I am not sure I want to go through Enterolab (partly because of the cost), and I wondered if a GI would be willing to order it. I have a follow up with my GI Feb 15, and I'm really considering cancelling because of my first appointment... but I really would like to have this genetic test to find some answers, especially having a son that is 2 1/2. If I, in fact, DO carry the gene (as I suspect I do), I would like his pediatrician to check him out, too.

[JustMe75]

I, along with my two daughters, had the genetic tests done through our doctors. I think the reason most people don't is because a lot of insurances don't pay for it and it is costly. My insurance did cover it (Aetna US Health) so I decided to go that way since it was no cost to me. Another reason some people don't go that route is because if you have the gene it could be used against you later for things like changing insurance carriers, or so I've heard.

My doctor wasn't familiar with the test and the pediatrician didn't even know they could test for a genetic link. But they are pretty good in that they will listen to me and it turned out that one daughter is DQ2 / DQ5 and me and the youngest are double DQ2. It still doesn't give you a celiac diagnosis but it helped ease my mind that it's more likely celiac and that plus my positive dietary response is good enough for me for now. I still think about going back on gluten and having a biopsy but then remind myself that regardless of the results I would end up back on the gluten free diet because it works.

Remember that even if the gene test is negative you could still have celiac or a gluten intollerance so it won't necessarily rule it out like some doctors say. There are a few people on here without either of the genes that have a celiac diagnosis.

In case you need to know (my docs didn't know which tests to order) the tests are called HLA Typing for Celiac.

[ravenwoodglass]

My DD went the conventional doctor gene test way, and was told she could never be celiac because she didn't have the gene. This got me to get my genes tested through enterolab, and guess what, I don't have the recognized celiac genes either. Mine would label me with RA, which has been in remission now for over 5 years. Gene testing can be helpful but it is not the definative. Genetic research is still in it's infancy and not all the genes related to celiac have yet been found for sure. Gene testing can be helpful but as with blood testing and endo it is not the final word, your bodies reaction to the gluten-free diet is usually the best indication.