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

Mary5757

Recommended Posts

Mary5757 Newbie
Mary5757
Posted

Anyone done genetic testing for celiac? My daughter has it and I'd like to have my son tested to see if he has the gene. My insurance doesn't cover it. How expensive is it? Is there an at home kit? Any experiences with it?

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

Celiac.com Sponsor (A8-M):


taxlady23 Newbie
taxlady23
Posted

Anyone done genetic testing for celiac? My daughter has it and I'd like to have my son tested to see if he has the gene. My insurance doesn't cover it. How expensive is it? Is there an at home kit? Any experiences with it?

My son had genetic testing done for celiacs. Our insurance did cover it, but it couldn't be done at a regular lab, we had to go to the hospital lab that does the prometheus test for celiac.
cassP Contributor
cassP
Posted

i did genetic testing thru enterolab .. it was about 150$ im happy i spent the money!

1974girl Enthusiast
1974girl
Posted

If it would make a difference then do it. They did it on both my girls to try rule it out. It ruled it in. But.... Even though I know my younger dd has dq 2 I am still not gluten-free with her. 30% of the population has it, too. My celiac dd has both 2 and 8 so we are gluten-free with her despite no gi symptoms.

ravenwoodglass Mentor
ravenwoodglass
Posted

I found it interesting. My DD, who was both biopsy and blood work positive, had her's done and was told she didn't have the genes. Thus they said her diagnosis was a false diagnosis. I then had my genes tested. Turns out I don't have either one of the two most commonly tested for celiac associated genes either. I have a double dose of a gene that is recognized in other countries but not in the US. So if you want to have the testing done have it done but know that it can not fully rule out celiac if the gene tests are not positive for DQ2 or DQ8.

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

ravenwoodglass

Can you tell us more about the double gene?

My GI took bloods for genetic testing Monday, so I want to be ready in case it is negative. I am not sure which tests are done in the UK, but he was very clear his view is no genes no celiac.

He was very helpful and listened. I am always up for educating a doctor if necessary :)

Thanks

1desperateladysaved Proficient
1desperateladysaved
Posted

I had a genetic test from a lab in Sweetwater, Texas. I was very satisfied with the results and information they provided me with. I had both 2 DQ2 snf 2 DQ8. I was told that all of my children were therefore carriers of the genes. I also discovered that both of my parents have the genes. Most people could probably not discover all of that from the one test. I had 4/4 gene alleles for gluten intolerance. The cost was under 400 dollars and involved swabbing some cells from the cheeks with cotton swab, filling out paperwork and mailing it back to the lab. The genetic test plus my symptoms were used by my MD for diagnosis. ***

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

Celiac.com Sponsor (A8-M):


MoMof2Boyz Enthusiast
MoMof2Boyz
Posted

I was told that since my ds tested negative for DQ2 an DQ8 that there is NO chance he can have celiac. hmmmmm...

jerseyangel Proficient
jerseyangel
Posted

I had the genetic test, ordered by my gastro. Insurance paid for it.

Cara in Boston Enthusiast
Cara in Boston
Posted

We had the test and based on the result, it led our original doctor to believe that my son did NOT have it. After we switched doctors and they did an endoscopy, he was found to be very positive. People with the genes don't always get it. People without the genes do get it. I'm not really sure how a test like that can be helpful.

Cara

shadowicewolf Proficient
shadowicewolf
Posted

not nessisarily. The doctors in the U.S. only test for those two. I've heard that outside of the States they test for more.

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. knitty kitty
      - knitty kitty replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

      Check your multivitamin to see if it contains Thiamine Mononitrate, which is a "shelf-stable" form of thiamine that doesn't break down with exposure to light, heat, and time sitting on a shelf waiting to be sold. Our bodies have difficulty absorbing and utilizing it. Only 30% is absorbed and less can be utilized. There's some question as to how well multivitamins...
    2. Scatterbrain
      - Scatterbrain replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

      I am taking a multivitamin which is pretty bolstered with B’s. Additional Calcium, D3, Magnesium, Vit C, and Ubiquinol. Started Creapure creatine monohydrate in June for athletic recovery and brain fog. I have been working with a Nutritionist along side my Dr. since February. My TTG IGA levels in January were 52.8 and my DGP IGA was >250 (I don’t ...
    3. knitty kitty
      - knitty kitty replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

      @Scatterbrain, What supplements are you taking? I agree that the problem may be nutritional deficiencies. It's worth talking to a dietician or nutritionist about. Did you get a Marsh score at your diagnosis? Was your tTg IgA level very high? These can indicate more intestinal damage and poorer absorption of nutrients. Are you eating...
    4. knitty kitty
      - knitty kitty replied to Larzipan's topic in Related Issues & Disorders
      34

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Vitamin and mineral deficiencies can make TMJ worse. Vitamins like B12 , Thiamine B1, and Pyridoxine B6 help relieve pain. Half of the patients in one study were deficient in these three vitamins in one study below. Malabsorption of vitamins and minerals is common in celiac disease. It's important to eat healthy nutrient dense diets like the Autoimmune...
    5. Celiac.com Sponsored Post
      0

      Recently launched Daura Non-Alcoholic Named One of the Best in the World by Forbes

  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,311
    • Most Online (within 30 mins)
      7,748
    EMP6543
    Newest Member
    EMP6543
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • knitty kitty
      Feel like I’m starting over

      By knitty kitty · Posted

      Check your multivitamin to see if it contains Thiamine Mononitrate, which is a "shelf-stable" form of thiamine that doesn't break down with exposure to light, heat, and time sitting on a shelf waiting to be sold.  Our bodies have difficulty absorbing and utilizing it.  Only 30% is absorbed and less can be utilized.   There's some question as to how well multivitamins dissolve in the digestive tract.  You can test this at home.  YouTube has instructional videos.   Talk to your nutritionist about adding a B Complex.  The B vitamins are water soluble, so any excess is easily excreted if not needed.  Consider adding additional Thiamine in the forms Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) or thiamine hydrochloride.   Thiamine is needed to help control electrolytes.  Without sufficient thiamine, the kidneys loose electrolytes easily resulting in low sodium and chloride.   We need extra thiamine when we're emotionally stressed, physically ill, and when we exercise regularly, are an athlete, or do physical labor outdoors, and in hot weather.  Your return to activities and athletics may have depleted your thiamine and other B vitamins to a point symptoms are appearing.   The deficiency symptoms of B vitamins overlap, and can be pretty vague, or easily written off as due to something else like being tired after a busy day.  The symptoms you listed are the same as early B vitamin deficiency symptoms, especially Thiamine.  Thiamine deficiency symptoms can appear in as little as three days.  I recognize the symptoms as those I had when I was deficient.  It can get much worse. "My symptoms are as follows: Dizziness, lightheaded, headaches (mostly sinus), jaw/neck pain, severe tinnitus, joint stiffness, fatigue, irregular heart rate, post exercise muscle fatigue and soreness, brain fog, insomnia.  Generally feeling unwell." I took a B 50 Complex twice a day and extra thiamine in the forms Benfotiamine and TTFD.  I currently take the Ex Plus supplement used in this study which shows B vitamins, especially Thiamine B 1, Riboflavin B2, Pyridoxine B 6, and B12 Cobalamine are very helpful.   A functional evaluation of anti-fatigue and exercise performance improvement following vitamin B complex supplementation in healthy humans, a randomized double-blind trial https://pmc.ncbi.nlm.nih.gov/articles/PMC10542023/
    • Scatterbrain
      Feel like I’m starting over

      By Scatterbrain · Posted

      I am taking a multivitamin which is pretty bolstered with B’s.  Additional Calcium, D3, Magnesium, Vit C, and Ubiquinol.  Started Creapure creatine monohydrate in June for athletic recovery and brain fog.  I have been working with a Nutritionist along side my Dr. since February.  My TTG IGA levels in January were 52.8 and my DGP IGA was >250 (I don’t know the exact number since it was so high).  All my other labs were normal except Sodium and Chloride which were low.  I have more labs coming up in Dec.  I make my own bread, and don’t eat a lot of processed gluten-free snacks.
    • knitty kitty
      Feel like I’m starting over

      By knitty kitty · Posted

      @Scatterbrain, What supplements are you taking? I agree that the problem may be nutritional deficiencies.  It's worth talking to a dietician or nutritionist about.   Did you get a Marsh score at your diagnosis?  Was your tTg IgA level very high?  These can indicate more intestinal damage and poorer absorption of nutrients.   Are you eating processed gluten free food stuffs?  Have you looked into the Autoimmune Protocol Diet?  
    • knitty kitty
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By knitty kitty · Posted

      Vitamin and mineral deficiencies can make TMJ worse.  Vitamins like B12 , Thiamine B1, and Pyridoxine B6 help relieve pain.  Half of the patients in one study were deficient in these three vitamins in one study below. Malabsorption of vitamins and minerals is common in celiac disease.  It's important to eat healthy nutrient dense diets like the Autoimmune Protocol Diet, a Paleo diet that has similarities to the Mediterranean diet mentioned in one of the studies.   Is there a link between diet and painful temporomandibular disorders? A cross-sectional study https://pmc.ncbi.nlm.nih.gov/articles/PMC12442269/   Nutritional Strategies for Chronic Craniofacial Pain and Temporomandibular Disorders: Current Clinical and Preclinical Insights https://pmc.ncbi.nlm.nih.gov/articles/PMC11397166/   Serum nutrient deficiencies in the patient with complex temporomandibular joint problems https://pmc.ncbi.nlm.nih.gov/articles/PMC2446412/  
    • Iam
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Iam · Posted

      Yes.  I have had the tmj condition for 40 years. My only help was strictly following celiac and also eliminating soy.  Numerous dental visits and several professionally made bite plates  did very little to help with symptoms
×
×
  • 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.