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


ashase

Recommended Posts

ashase Newbie

Just wondering if anyone else had had the genetic testing for Celiac? I did and received my results--positive for both markers....so I guess it's official now. Well at least the docs won't think it is all in my head anymore....


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



Celiac.com Sponsor (A8-M):



Alexolua Explorer

How'd you get your testing done? I went through Enterolab.

Gene Test for Gluten Sensitivity

Molecular analysis:  HLA-DQB1*0602, 0301

Serologic equivalent:  HLA-DQ 1,3  (Subtype 6,7)

My results, LOL.

gf4life Enthusiast

ashase,

I also had myself and my children tested through Enterolab. Here are our results:

Me (32 year old female):

Gene Test for Gluten Sensitivity

Molecular analysis: HLA-DQB1*0201, 0301

Serologic equivalent: HLA-DQ 2,3 (Subtype 2,7)

HLA gene analysis reveals that you have the main gene that predisposes to gluten sensitivity and celiac sprue (HLA-DQ2). This genotype also can predispose to microscopic colitis and other autoimmune syndromes.

My 9 year old son:

Gene Test for Gluten Sensitivity

Molecular analysis: HLA-DQB1*0301, 0301

Serologic equivalent: HLA-DQ 3,3 (Subtype, 7,7)

Although you do not possess the main genes predisposing to celiac sprue (HLA-DQ2 or HLA-DQ3, subtype 8), HLA gene analysis reveals that you have two copies of a gene (HLA-DQ3 subtype 7) that predisposes to gluten sensitivity.

My 8 year old son:

Gene Test for Gluten Sensitivity

Molecular analysis: HLA-DQB1*0502, 0301

Serologic equivalent: HLA-DQ 1,3 (Subtype 5,7)

HLA gene analysis reveals that you have a genotype that predisposes to gluten sensitivity (HLA-DQ1, 3 especially that involving DQB1* 0301). This genotype also can predispose to microscopic colitis and other autoimmune syndromes.

My 5 year old daughter:

Gene Test for Gluten Sensitivity

Molecular analysis: HLA-DQB1*0201, 0301

Serologic equivalent: HLA-DQ 2,3 (Subtype 2,7)

HLA gene analysis reveals that you have the main gene that predisposes to gluten sensitivity and celiac sprue (HLA-DQ2). This genotype also can predispose to microscopic colitis and other autoimmune syndromes.

Based on our results I have to assume (since he won't get tested) that my husband would carry HLA-DQ 1,3 (Subtype 5,7) since that would be the only combo that would result in the mix of genetics that we have going. I would like to get him tested to confirm this, since he won't currently go on the diet. He eats gluten-free when he eats with us at family dinners, but he works through dinner 5 nights a week and so that means he is only getting a few gluten-free meals a week. He does also have symptoms, but is in denial that he is sick. He just thinks that he is getting old, and that is why he is having more health issues. 36 is NOT old!! He is physically fit, but his insides are falling apart!

Currently the only two genes that are being called Celiac Markers are the DQ2 & DQ8(or is it DQ3 subtype 8?). Anyhow, there may come a day when these other gluten intolerance genes are also recognised as Celiac markers. My middle boy has a lot of health issues and sees a lot of specialists in different areas. His Rheumatologist/Immunologist is not ruling out Celiac in him, since he has so many of the symptoms and those symptoms improve so dramatically when he is gluten-free that it can hardly be ignored. This doctor (Dr. Wright at Central California Children's Hospital) says that there has not been enough research on celiac disease and genetics to show that they have isolated ALL of the genes responsible for the disease. My son also has a rare varient of Familial Meditteranean Fever (for which they have not isolated all of those genes yet either!). We are just a little bit ahead of the researchers. Maybe someday they will catch up to us and realise that gluten free is best for almost all of the global population!! That might just be wishful thinking. I'd bet the government here would have to keep it quiet since wheat is such a big commodity in the USA. Maybe we should just turn all those wheat fields into rice paddies! :D

I hope this helps with your personal genetics research.

God bless,

Mariann

ashase Newbie

My Dr. a gastroentrologist that specializes in Celiac ordered the test through prometheus labs (in CA I think) It was a blood test. I came back positive for DQ2 & DQ8. Why did you go through enterolab and not through youor doc? just curious...

Thanks for all of the info. I am mgoing to have my kids tested...I am scared to death I gave it to them :(

Alexolua Explorer
Why did you go through enterolab and not through youor doc?

Because unfortunately, my doctor isn't a Celiac specialist. Though he did mention he heard of genetic testing done by a group in CA, when I showed him enterolabs' results. So guess he knows a little, lol.

gf4life Enthusiast

My insurance wouldn't pay for Promethius labs for my kids when they were ordered by the pediatric GI and they cost $750 for the gene test (which has to be done with the antibody blood tests and automatically is performed if the antibody tests are negative). It costs about $150 at Enterolab ($350 for complete stool/gene panel), and is performed at a top genetics lab in Colorado called Laboratories at Bonfils, so I was confident with the accuracy of the results. I am also glad I went through Enterolab since they also check for the lesser genes that cause non-celiac gluten intolerance. Two of my kids don't carry either of the two celiac genes, yet they are gluten intolerant. Promethius tests will miss those people who are gluten intolerant but not Celiac.

My GI doctor would not order the gene test for me. She doesn't think I have a problem with gluten, she still thinks it's IBS. I suffered for over 25 years and was not willing to go to yet another doctor and keep trying to get a diagnosis. I had already done a gluten free diet trial and the results were so dramatic that I just needed confirmation of what I already knew. That is when I did Enterolab for myself last October. I then went and got my kids blood tested and referred to a GI when they all came back positive on Gliadin IgG only. The GI wanted to do the Promethius tests since he trusts that lab, but the insurance wouldn't approve it. $750 x 3 was just too much to pay, so we chose to go with Enterolab. We had the complete stool and gene panel done on all three for around $1000, and found all three of them are gluten intolerant and casein intolerant. They are all doing so well on the diet that their GI wants to keep them on the diet and moniter their progress, even though they currently do not have a diagnosis of Celiac. Not a problem with me. The kids are so much healthier now, and that is all that I care about.

God bless,

Mariann :)

ashase Newbie

Why don't docs trust enterolab? Was the gene testing done with a blood orcheek sample?

Thanks,

Jessica


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



Celiac.com Sponsor (A8-M):



Alexolua Explorer

Cheek sample.

I can't speak for all doctors. Mine had just never heard of Enterolab, so doesn't agree with his testing. Doctor Fine (at Enterolab) said he was working on a study to be published, which I'd hope would then give something for doctors to read about his work.

Archived

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

  • 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. - Scott Adams replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

    2. - MogwaiStripe replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      Gluten Issues and Vitamin D

    3. - Butch68 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

    4. - trents replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      Taking Probiotics but Still Getting Sick After Gluten – Advice?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,216
    • Most Online (within 30 mins)
      7,748

    Athenablue
    Newest Member
    Athenablue
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
×
×
  • 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.