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
ashase
Posted

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
Alexolua
Posted

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
gf4life
Posted

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
ashase
Posted
  • Author

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
Alexolua
Posted
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
gf4life
Posted

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
ashase
Posted
  • Author

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
Alexolua
Posted

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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,134
    • Most Online (within 30 mins)
      7,748
    Driver
    Newest Member
    Driver
    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

    • Sarah Grace
      Headaches / Migraines and Hypoglycaemia

      By Sarah Grace · Posted

      Dear Kitty Since March I have been following your recommendations regarding vitamins to assist with various issues that I have been experiencing.  To recap, I am aged 68 and was late diagnosed with Celiac about 12 years ago.  I had been experiencing terrible early morning headaches which I had self diagnosed as hypoglycaemia.  I also mentioned that I had issues with insomnia, vertigo and brain fog.   It's now one year since I started on the Benfotiamine 600 mg/day.  I am still experiencing the hypoglycaemia and it's not really possible to say for sure whether the Benfotiamine is helpful.  In March this year, I added B-Complex Thiamine Hydrochloride and Magnesium L-Threonate on a daily basis, and I am now confident to report that the insomnia and vertigo and brain fog have all improved!!  So, very many thanks for your very helpful advice. I am now less confident that the early morning headaches are caused by hypoglycaemia, as even foods with a zero a GI rating (cheese, nuts, etc) can cause really server headaches, which sometimes require migraine medication in order to get rid off.  If you are able to suggest any other treatment I would definitely give it a try, as these headaches are a terrible burden.  Doctors in the UK have very limited knowledge concerning dietary issues, and I do not know how to get reliable advice from them. Best regards,
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
×
×
  • 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.