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. JudyLou
      - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Seeking advice on potential gluten challenge

      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician? Have you been checked for nutritional deficiencies? Osteoporosis? Thyroid? Anemia? Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the...
    2. knitty kitty
      - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Seeking advice on potential gluten challenge

      @JudyLou, I have dermatitis herpetiformis, too! And...big drum roll... Niacin improves dermatitis herpetiformis! Niacin is very important to skin health and intestinal health. You're correct. dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form...
    3. trents
      - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest...
    4. trents
      - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

      @Mark Conway, here is an article outlining the various tests that can be used to diagnose celiac disease. By far, the most popular one ordered by physicians is the tTG-IGA. But almost all of these tests are known by different names so the terminology will vary from place to place and lab to lab. The article gives common variant names for each test. In...
    5. JudyLou
      - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Seeking advice on potential gluten challenge

      Thank you so much @knitty kitty! My feet aren’t dry or ashy and I don’t have a rash that gets scaly. It’s like very itchy/burning vesicles that are symmetrical - on both arms, both legs, etc. They actually feel better in direct sunlight as long as it isn’t really hot or I’m not exercising outside, but gets worse if I sweat (especially if the area is covere...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,154
    • Most Online (within 30 mins)
      7,748
    Kathy N
    Newest Member
    Kathy N
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Upcoming Events

  • Posts

    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
    • trents
      Have I got coeliac disease

      By trents · Posted

      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
    • trents
      Have I got coeliac disease

      By trents · Posted

      @Mark Conway, here is an article outlining the various tests that can be used to diagnose celiac disease. By far, the most popular one ordered by physicians is the tTG-IGA. But almost all of these tests are known by different names so the terminology will vary from place to place and lab to lab. The article gives common variant names for each test.  In addition to IGA tests there are IGG tests which are particularly useful in the case of IGA deficiency.  
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thank you so much @knitty kitty! My feet aren’t dry or ashy and I don’t have a rash that gets scaly. It’s like very itchy/burning vesicles that are symmetrical - on both arms, both legs, etc. They actually feel better in direct sunlight as long as it isn’t really hot or I’m not exercising outside, but gets worse if I sweat (especially if the area is covered up). It’s not usually on the outside of my elbows and knees which seems more typical of dermatitis herpetiformis (unless it spreads there). It tends to first hit the inside of those areas. Interestingly, twice the rash broke out soon after eating an unhealthy meal and having an alcoholic drink (I only drink a few times a year, no more alcohol content than a glass of wine).  So I wonder if there is a connection. I’m halfway considering doing a gluten challenge for a few months to see what happens, knowing I can stop if I have any symptoms, and asking for a full celiac disease panel at the end. I really appreciate your thoughts! 
×
×
  • 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.