Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Celiac.com Sponsor:                                    


Photo
- - - - -

Genetic Testing-Laboratory Recommendations?


  • Please log in to reply

8 replies to this topic

#1 Mrs. M.

 
Mrs. M.

    New Community Member

  • Advanced Members
  • Pip
  • 15 posts
 

Posted 19 April 2012 - 07:46 PM

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.
  • 0

Celiac.com Sponsor:

#2 Type1CDE

 
Type1CDE

    New Community Member

  • Advanced Members
  • Pip
  • 22 posts
 

Posted 20 April 2012 - 06:38 AM

Yikes! I will be watching this closely b/c I want my sons tested too... Sorry I don't know of any for you.
  • 0

#3 beachbirdie

 
beachbirdie

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 652 posts
 

Posted 20 April 2012 - 08:09 AM

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 Kimball Genetics was around that. This is quoted from a Gluten Intolerance Group 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 My Celiac ID 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.
  • 0
1999 - Hypothyroid
2003 - Hashimoto's Disease
2008 - Diverticulitis
2009 - Significant Vit D Deficiency
2011 - Diverticulitis again
2011 - HLA-DQ2.2
2012 - TtG IgG positive... I am now, finally, Gluten Free - 5/16/2012

#4 Mrs. M.

 
Mrs. M.

    New Community Member

  • Advanced Members
  • Pip
  • 15 posts
 

Posted 20 April 2012 - 11:14 AM

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 My Celiac ID 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.
  • 0

#5 frieze

 
frieze

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,093 posts
 

Posted 20 April 2012 - 12:01 PM

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.
  • 0

#6 nora_n

 
nora_n

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,490 posts
 

Posted 23 April 2012 - 06:44 AM

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.
  • 0
gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.
daughter officially diagnosed celiac and casein intolerant.
non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5
Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet
Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

#7 PattyBoots

 
PattyBoots

    Community Member

  • Advanced Members
  • PipPipPip
  • 71 posts
 

Posted 25 April 2012 - 05:39 AM

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.
  • 0

#8 nora_n

 
nora_n

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,490 posts
 

Posted 25 April 2012 - 08:59 AM

intersting.
  • 0
gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.
daughter officially diagnosed celiac and casein intolerant.
non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5
Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet
Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

#9 Ninja

 
Ninja

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 338 posts
 

Posted 25 April 2012 - 09:32 AM

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. :(
  • 0

Gluten Free 2/12 

 

Let the soul speak with the silent articulation of a face

~Rumi
 

 





0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: