Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Genetic Testing-Laboratory Recommendations?

Mrs. M.

Recommended Posts

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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. :(

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Kimmy88
      - Kimmy88 commented on Scott Adams's article in Winter 2026 Issue
      8

      Can You Really Trust Gluten-Free Menus? What Every Celiac Needs to Know Before Eating Out

      Thanks this is helpful!
    2. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Fermented foods, Kefir, Kombucha?

      very interesting thanks for the info
    3. Florence Lillian
      - Florence Lillian replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      13

      gluten free cookie recipes

      More cookie recipes ...thanks so much for the heads-up Scott. One can never have too many. Cheers, Florence.
    4. Russ H
      - Russ H replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting...
    5. cristiana
      - cristiana replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

      Hi @Charlie1946 You are very welcome. I agree wholeheartedly with @knitty kitty: "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis. I noticed it after standing in cold wind, affecting...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,915
    • Most Online (within 30 mins)
      7,748
    DRIZZE
    Newest Member
    DRIZZE
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      very interesting thanks for the info  
    • Florence Lillian
      gluten free cookie recipes

      By Florence Lillian · Posted

      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Severe severe mouth pain

      By Russ H · Posted

      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
    • cristiana
      Severe severe mouth pain

      By cristiana · Posted

      Hi @Charlie1946 You are very welcome.   I agree wholeheartedly with @knitty kitty:  "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis.  I noticed it after standing in cold wind, affecting  me after the event - for example, the evening after standing outside, I would feel either tingling or stabbing pain in my cheek.   I found using a neck roll seemed to help, reducing caffeine, making sure I was well-hydrated, taking B12 and C vitamins and magnesium.  Then when the lockdowns came and I was using a facemask I realised that this pain was almost entirely eliminated by keeping the wind off my face.  I think looking back I was suffering from a type of nerve pain/damage.  At the time read that coeliacs can suffer from nerve damage caused by nutritional deficiencies and inflammation, and there was hope that as bodywide healing took place, following the adoption of a strict gluten free diet and addressing nutritional deficiencies, recovery was possible.   During this time, I used to spend a lot of time outdoors with my then young children, who would be playing in the park, and I'd be sheltering my face with an upturned coat collar, trying to stay our of the cold wind!  It was during this time a number of people with a condition called Trigeminal Neuralgia came up to me and introduced themselves, which looking back was nothing short of miraculous as I live in a pretty sparsely populated rural community and it is quite a rare condition.   I met a number of non-coeliacs who had suffered with this issue  and all bar one found relief in taking medication like amitriptyline which are type of tricyclic anti-depressant.   They were not depressed, here their doctors had prescribed the drugs as pain killers to address nerve pain, hence I mention here.  Nerve pain caused by shingles is often treated with this type of medication in the UK too, so it is definitely worth bearing in mind if standard pain killers like aspirin aren't working. PS  How to make a neck roll with a towel: https://www.painreliefwellness.com.au/2017/10/18/cervical-neck-roll/#:~:text=1.,Very simple. 
    • Scott Adams
      gluten free cookie recipes

      By Scott Adams · Posted

      We just added a ton of new recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-cookie-recipes/
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.