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Genetic Testing-Laboratory Recommendations?

Mrs. M.

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Mrs. M. Apprentice
Mrs. M.
Posted

I am looking for recommendations for laboratories that do diagnostic genetic testing for celiac disease. My doctor says I have celiac disease based on a (slightly) high TTG-IgG. I have been gluten-free for a couple months and feeling a little better but never had severe symptoms.

I am interested in genetic testing for two reasons: (1) to lend support to or to rule out my diagnosis of celiac disease, and (2) I want genetic testing for my kids, assuming I have the Celiac-predisposing genes.

My health care providers do not seem to be very well-informed about Celiac disease. At least they have a very different approach than what I read about in this forum and in all the many celiac books I've been reading. No one seems inclined to do more testing on me, especially not genetic testing since it is expensive. I would be interested in paying for it if I can find a lab that offers it for a reasonable price. The one quote I have so far is $400 per person which is too much since I have several kids who would need to be tested. The other caveat is I want the option of cheek swab/saliva testing since my kids will not want blood draws.

So, if anyone has experience with genetic testing, and lab recommendations, please send them my way--thanks!!

by the way, I understand that the genetic testing doesn't tell everything. But I think it would be helpful information for me.

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Type1CDE Newbie
Type1CDE
Posted

Yikes! I will be watching this closely b/c I want my sons tested too... Sorry I don't know of any for you.

beachbirdie Contributor
beachbirdie
Posted

I am looking for recommendations for laboratories that do diagnostic genetic testing for celiac disease. My doctor says I have celiac disease based on a (slightly) high TTG-IgG. I have been gluten-free for a couple months and feeling a little better but never had severe symptoms.

I am interested in genetic testing for two reasons: (1) to lend support to or to rule out my diagnosis of celiac disease, and (2) I want genetic testing for my kids, assuming I have the Celiac-predisposing genes.

My health care providers do not seem to be very well-informed about Celiac disease. At least they have a very different approach than what I read about in this forum and in all the many celiac books I've been reading. No one seems inclined to do more testing on me, especially not genetic testing since it is expensive. I would be interested in paying for it if I can find a lab that offers it for a reasonable price. The one quote I have so far is $400 per person which is too much since I have several kids who would need to be tested. The other caveat is I want the option of cheek swab/saliva testing since my kids will not want blood draws.

So, if anyone has experience with genetic testing, and lab recommendations, please send them my way--thanks!!

by the way, I understand that the genetic testing doesn't tell everything. But I think it would be helpful information for me.

Don't know of any place that does this for under $350.

The latest price I saw for Open Original Shared Link was around that. This is quoted from a Open Original Shared Link site, it came from an email that Kimball sent to a member in response to pricing inquiry in 2009:

Thank you for your inquiry. The list price for the Celiac Disease DNA Test is $395. Patients who enclose payment with their sample receive a 10% discount (check or credit card) bringing the price to $355.50. In addition, we offer a family discount. After the first family member is tested at the $355.50 rate, each additional family member (immediate and extended) is entitled to the family discount rate of $316.00 for upfront payment. These samples can be sent in at any time. All individuals being tested will receive a statement from our laboratory. This statement contains the CPT codes that insurance companies require to make a claim, and the statement can be submitted directly to the insurance company. Most insurance companies cover this type of testing, but since insurance plans vary, we recommend individuals contact their insurance company to check their individual coverage. In order to find out from the insurance company if this test is covered, the insurance company will need the CPT codes for the Celiac Disease DNA Test which are as follows: 83891, 89896 x72, 83901 x2, and 83912

You might want to call Kimball for the latest. Their toll-free number is 800-320-1807.

You can do Open Original Shared Link for $329, it is a saliva test. They do not mail your results to you, you get them at an online link. They do not bill insurance or help you bill your insurance.

There might be others, but I don't think they are any less expensive.

Mrs. M. Apprentice
Mrs. M.
Posted
  • Author

Thank you. Kimball is the lab I spoke with. I like them because they have certified genetic counselors and I know I can trust their results and quality of service. I just don't think my husband will fork out that kind of money for a test he doesn't understand (and a disease he doesn't understand). I will check out the My Celiac ID as well.

You might want to call Kimball for the latest. Their toll-free number is 800-320-1807.

You can do Open Original Shared Link for $329, it is a saliva test. They do not mail your results to you, you get them at an online link. They do not bill insurance or help you bill your insurance.

frieze Community Regular
frieze
Posted

1) you may want to consider that you may complicate healthcare and life insurance issues if you document celiac disease.

2) the gene test doesn't give you a lot of useful info, you can have a gene, and never develope the disease, and conversely not have one of the two commonly recognized genes, and develope the disease...

3) money may be better spent elsewhere.

nora-n Rookie
nora-n
Posted

note that some labs only test for DQ2 and 8.

Some choose to test privately through Enterolab, and they get the results of both beta chains.

PattyBoots Apprentice
PattyBoots
Posted

I got an email on April 19 from Prometheus stating that they will discontinue the genetic testing as of April 30 and the myceliacid.com address will be shut down on May 18. Also, directly from the email: "Prometheus will continue to offer celiac genetics testing which can be ordered by your healthcare provider." IOW, you'll no longer be able to order it on your own, but you can try to get a doctor to order it. I'm sure it has something to do with the insurance companies getting their knickers in a knot.

I had the test done; I'm glad I did because I have both the DQ2.2 AND the DQ2.5 genes. Explains a lot for me and my family history.

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nora-n Rookie
nora-n
Posted

intersting.

Ninja Contributor
Ninja
Posted

I got an email on April 19 from Prometheus stating that they will discontinue the genetic testing as of April 30 and the myceliacid.com address will be shut down on May 18. Also, directly from the email: "Prometheus will continue to offer celiac genetics testing which can be ordered by your healthcare provider." IOW, you'll no longer be able to order it on your own, but you can try to get a doctor to order it. I'm sure it has something to do with the insurance companies getting their knickers in a knot.

I had the test done; I'm glad I did because I have both the DQ2.2 AND the DQ2.5 genes. Explains a lot for me and my family history.

That is sad! I was hoping to do the genetic testing through them this summer. Guess not. :(

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