Genetic Testing

[Brainfog]

Just wondering if anyone has information regarding the genetic test. What to do in order to get the test, cost and any other info. Whether even this is something that someone should look into doing on not?

Any pros v. cons. for doing the test?

thanks

[leadmeastray88]

Just wondering if anyone has information regarding the genetic test. What to do in order to get the test, cost and any other info. Whether even this is something that someone should look into doing on not?

Any pros v. cons. for doing the test?

thanks

Kimball does genetic testing:

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Last time I checked with them I think it's around $300

Remember that gene testing is not diagnostic. It can just show if you possess the gene markers for Celiac. Even if you do have one, it doesn't mean that you have Celiac or that you will develop it...but that it's possible.

The problem with genetic testing is that many diagnosed Celiacs don't have the common "gene markers" (DQ2 or DQ8) so it isn't really a reliable method of testing.

Have you had other testing done?

[leadmeastray88]

I should also have added that Enterolab (www.enterolab.com) does genetic testing for $149.

The problem is that Enterolab and Kimball have different ideas of what markers are associated with Celiac and which are not. For example, I have a copy of DQ*0202. Enterolab says that it's a "gluten sensitivity" gene while Kimball states on their website that it's a Celiac gene.

[caek-is-a-lie]

I sent my sample in to Enterolab this week. I don't care what they call it as long as the right genes are tested. I can figure it out from there. The price is right and I don't have to give the info to the insurance company if I don't want to. I'm just hoping they find something because I have some questions I want answered.

[maile]

Just wondering if anyone has information regarding the genetic test. What to do in order to get the test, cost and any other info. Whether even this is something that someone should look into doing on not?

Any pros v. cons. for doing the test?

thanks

If you wish to do a genetic test on your own you can go to the Enterolab website and order one (except if you live in NY State, the site has details on that) all the costs etc are clearly labled.

Do be aware that the genetic testing is just that, it won't diagnose but it will give you clues with regards to propensity towards celiac/gluten intolerance.

as to whether you should do it is a popular topic on this forum. Search "enterolab" or "genetic testing" and you will find a bunch of threads outlining the various opinions.

[sbj]

Just wondering if anyone has information regarding the genetic test. What to do in order to get the test, cost and any other info. Whether even this is something that someone should look into doing on not? Any pros v. cons. for doing the test?

I had the genetic testing done through my HMO via Prometheus. It was the last step in my diagnosis: first endoscopy, then celiac blood panel, and lastly genetic test. The genetic test was done only to confirm my doctors' suspicion; it cannot diagnose celiac in and of itself. I personally would not bother with this testing as I don't think it really tells you much of anything. I would only recommend it if you have already tested positive via biopsy and celiac panel and wish to confirm the celiac diagniosis prior to undertaking this radical diet/lifestyle change. Just knowing your markers is not really telling you much of anything and might get you worried for no good reason. Lots of folks have the markers and it does not mean they will ever get celiac disease.

[Brainfog]

Thankyou, yeah i probably will not have the test ran, but was curious. My lab test (blood panel)came back neg. still need to get a copy to post.

[caek-is-a-lie]

You're totally right that it's not a substitute for a blood test/endoscopy. For me, it helps me because I don't want to go back on gluten to have the other tests done because I get so sick. Plus I'm dealing with more than one autoimmune disorder that seem to overlap the gluten intolerance and I have some questions about the two that I feel a genetic test would help answer. But in general it's one of those personal preferences, extra little bit of information kind of thing. Certainly not necessary for diagnosis or treatment. Some doctors like to have the info, and some don't.

[lizard00]

I had the testing done through Prometheus. My doctor ordered it because by the time I saw him, I had been gluten-free for around 6 months, and he really felt it necessary to know if we were dealing with celiac or not.

It's not diagnostic in itself, but in my case, it gave us some resolution. My bloodwork was negative because I'm IgA deficient, and going back on gluten for a month to hope for enough damage to see through a scope wasn't really an option. So, for him, he evaluated my risk, looked at the positive dietary response and was satisfied to diagnose me. In my case, it was extremely helpful, to others, maybe not. What it also told me is that my children will have at least one copy of the gene to put them at risk for developing celiac, that's helpful, too. Doesn't mean they'll get it, but at least we know to monitor them.

[CMG]

I had genetic testing done for the same reason as lizard00. My allergist suggested the test after I told her how I react to wheat/gluten. I am DQ2 positive, went to a GI doc with this information, but he won't diagnose base on genetics and symptoms. I did a gluten challenge for a little over a month, and my biopsy was negative. So, I still don't have an official diagnosis, but I do now have my self-diagnosis, bolstered by the genetic result. The GI doc also recommended genetic testing for my children so we will know how closely to monitor them. (One already is gluten free and has responded beautifully - she's the reason I went gluten-free to begin with!)