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

Just Got Results And What's This Double Dq Thing You Talk About?


LynneM

Recommended Posts

LynneM Apprentice

Hi, I was just reading some of the other posts and saw some references to double DQ, what is that? Just got my test results today, apparently I do have the main gene that predisposes to celiac and then the other that predisposes to sensitivity. I'm so glad I caught it before I ended up with all the horrible illnesses my mom had. If only I'd known about this earlier, it could have saved her a lot of suffering too. Here are the results, any comments would be appreciated, especially about the HLA gene analysis, I'd like to understand it better. Thanks.

Fecal Antigliadin IgA 17 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 13 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units)

Fecal anti-casein (cow


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



Celiac.com Sponsor (A8-M):



Nantzie Collaborator

Some of us have double DQ1, which tends to predispose to more neurological, pain and mobility problems (fibromyalgia is a common one), sleep problems and mood issues as well as GI issues.

I have double DQ1. My genes are - Serologic equivalent: HLA-DQ 1,1 (Subtype 6,6).

The DQ1 gene you have happens to be the same as the one I have double of. So you might notice the more neuro issues. Aches and pains you've had for years might lighten up or go away completely. I used to get shooting pain in my hips and back that was like an electric shock. That's gone away and I only get it now when I'm glutened. I never suspected that it had anything to do with gluten, so it was a great surprise when it went away.

I don't know if having double DQ1 made the symptoms more intense than someone with one DQ1 gene, or if it would be the same for anyone with that gene if it's been activated.

Nancy

LynneM Apprentice

I've suffered from depression and anxiety disorder all my life, along with both my parents and two brothers. One brother has taken it all the way to schizophrenia. Isn't gene sharing a wonderful thing? :lol:

Nantzie Collaborator

Oh yea, my Grandma had schizophrenia. She also at one point wasnt' eating wheat. My mom told me once that she used to eat these weird cookies called Digestives. Lo and behold, one of my first online orders for gluten-free food and what did they have? - Digestives. :blink:

I think she may have been told she had celiac at one point. My mom also said that her mom went to a doctor that filled her head with all sorts of weird things. My grandpa was always a jerk to her. It wouldn't surprise me at all if my grandpa convinced her she didn't have a problem with wheat and she went back to eating it. Especially considering how many of us put up with the same attitude from relatives in this day and age.

Nancy

foxglove Rookie

Do you find out from a biopsy all these things? Because I only got a blood test for the antibody, I guess, and because I was so high the celiac association said a biopsy wasn't necessary. And they said it wouldn't help anyway because i've been gluten-free for a month. But I would like to know more, like if I have any other sensitivies. Any suggestions?

confused Community Regular
Hi, I was just reading some of the other posts and saw some references to double DQ, what is that? Just got my test results today, apparently I do have the main gene that predisposes to celiac and then the other that predisposes to sensitivity. I'm so glad I caught it before I ended up with all the horrible illnesses my mom had. If only I'd known about this earlier, it could have saved her a lot of suffering too. Here are the results, any comments would be appreciated, especially about the HLA gene analysis, I'd like to understand it better. Thanks.

Fecal Antigliadin IgA 17 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 13 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units)

Fecal anti-casein (cow

LynneM Apprentice

Paula, that's very interesting, what were his symptoms that tipped you off? My only really bad symptoms were migraines and canker sores in my mouth, both of which disappeared when I stopped eating gluten. I had the genetic test to see if I was prone to celiac disease, and now I know I can't cheat. Boo hoo:(

And foxglove, I got the full test array from Enterolab. They do a stool and DNA analysis (from cheek swabs). The full works cost about $560, but I'm so glad I did it, because now all my questions have been answered about my food intolerances.


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



Celiac.com Sponsor (A8-M):



confused Community Regular
Paula, that's very interesting, what were his symptoms that tipped you off? My only really bad symptoms were migraines and canker sores in my mouth, both of which disappeared when I stopped eating gluten. I had the genetic test to see if I was prone to celiac disease, and now I know I can't cheat. Boo hoo:(

And foxglove, I got the full test array from Enterolab. They do a stool and DNA analysis (from cheek swabs). The full works cost about $560, but I'm so glad I did it, because now all my questions have been answered about my food intolerances.

That is so intersting, his major sign was canker sores and nosebleeds, and major stomach pains, that the drs said was just gastritis. But I knew better after i researched celiac. ANd he was very moody, one moment he would be screaming the next he was crying. Plus he was very skinny, but his bio mom and his dad were skinny at that age, so everyone kept saying it was his genes, but my mom and I knew better. I knew something was wrong, and tg i researched celiac for him, or i would have never dignosed myself as celiac.

Im guessing those genes might be a good indicator of canker sores.

paula

LynneM Apprentice

Paula, that IS interesting, because my brother used to have terrible nosebleeds when he was a kid and was very skinny, he always said he thought he had a tapeworm. And I don't see a lot of references here to canker sores, although it was one of the questions that enterolab asked about.

brizzo Contributor

I suffer from DH and when I get "glutenated" , my canker sores show almost immediatly; even before my DH starts to flare

confused Community Regular
Paula, that IS interesting, because my brother used to have terrible nosebleeds when he was a kid and was very skinny, he always said he thought he had a tapeworm. And I don't see a lot of references here to canker sores, although it was one of the questions that enterolab asked about.

Does your brother have the same genes as you?

I am so glad i found someone with the same genes as him, and we can compare stuff.

We always know when he has had gluten cause of the nosebleeds and canker sores, plus he gets really bad skin around his mouth.

paula

chocolatelover Contributor

I get terrible canker sores and have my whole life until I went gluten free. The one time I've had gluten since, I got 3 of them that lasted about a week. It was good to find out the cause of them--now I don't get them at all any more!

1-out-of-133 Newbie

Hi Lynne,

Thanks for posting- I've been lurking since October of last year and have been thinking about joining- but haven't been able to think of a really cool screen name or haven't "had" to add my input until your post.

I actually have been gluten free since October because of blood allergy testing (which wasn't even specifically for celiac). I've had such a great dietary response, the two weeks gluten free have turned into six months and I'll never purposely eat gluten again even without the EnteroLab fecal test or a biopsy.

I did decide to go ahead with the gene testing because of the link with schizophrenia, which my mother had. I just got my gene testing back from EnteroLab this past week and I have the exact same genes you have HLA-DQ 2,1 (Subtype 2,6).

Also the main reason I am so anti gluten (yeah- my friends hate me sometimes) is quite a bit of my anxiety and depression have gone away. Most of the other symptoms I was able to deal with (ok the joint pain decreasing and not having piles of my hair everywhere and those well formed bowel movements are nice too).

Thanks for such a great topic

Viola

LynneM Apprentice

Wow, the gene thing is really fascinating. Paula, my brother hasn't been tested (and won't, I'm sure, he doesn't take it all that seriously), but when he was a kid, as well as nosebleeds and being skinny, he also suffered from what was diagnosed as an "ulcer". But then it mysteriously "disappeared". And I was incredibly moody as a kid too, I remember being the same way as your stepson, happy one minute, and then crying the next.

Hi Viola, glad you registered! The schizophrenia thing is really interesting to me too, because I'm convinced that mental illness runs in my mom's family (she is the one who had undiagnosed celiac, and suffered horribly). My brother who "developed" schizophrenia was a heavy wheat eater, in fact, he was convinced that he could live just on wheat bread! I always thought his obsession with wheat was rather weird, and then he finally descended into total paranoid schizophrenia. As I said above, I've suffered from major depression and anxiety disorder all my life, I started taking paxil four years ago. I haven't stopped taking it since going gluten-free, but I have noticed that I'm feeling even better mentally now. Perhaps one day I'll take the plunge and stop the paxil, but it really saved my life and I'm afraid of going back to how it was before.

hathor Contributor

Do you mean what genes you have? You can find that out by swabbing the inside of your cheek.

I did that through Enterolab. They also did stool testing showing my intolerance to casein, egg, soy, & yeast, in addition to gluten. They don't test for anything else. I'm on my own trying to figure that out ...

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. - knitty kitty replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      Insomnia help

    2. - TheDHhurts posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      need help understanding testing result for Naked Nutrition Creatine please

    3. - cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      Insomnia help

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,107
    • Most Online (within 30 mins)
      7,748

    Maggie1349
    Newest Member
    Maggie1349
    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)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • knitty kitty
      @cristiana,  I react the same way.  Dairy consumption flushes out my digestive system within an hour, too! As casein is digested, it forms casomorphins that bind to opioid receptors in our bodies.  This is similar to digested gluten peptides being able to attach to opioid receptors in our bodies.   We have opioid receptors throughout our bodies including lots in the digestive tract. Casein raises tTg IgA antibodies just like gluten consumption does, which leads to further intestinal damage and continuing inflammation.  No wonder our bodies react to it by pushing the "emergency evacuation" ejection seat button! The mother of my childhood friend was British and introduced me to drinking tea properly with milk or cream.  I miss it so much.  And chocolate ice cream.  Not worth the after effects, though.  I've found taking Omega Three supplements (flaxseed oil, sunflower seed oil, evening primrose oil) helps shake those dairy cravings.   Green leafy veggies like broccoli, kale, and greens (mustard, turnip, collards) are great sources of calcium.  Avoid spinach as it is high in oxalates that block calcium absorption and may cause kidney stones.  Yes, more leafy greens are needed to reach the same amount of calcium in a glass of milk, but the greens have other benefits, like increased dietary fiber and polyphenols that act as antioxidants, reduce inflammation, and promote health.   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.  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.  
    • TheDHhurts
      Hi, I bought Naked Nutrition Creatine. It lists itself as gluten free but is not certified. (It used to be, but they dropped it in the past year or two apparently.) I wrote the company and asked them what testing results they had for creatine and they sent me the attached, which says the test result for gluten is <0.025MCG. I'm used to seeing test results as ppm, so I'm not sure what <0.025MCG means. Can it be converted to ppm easily? I want to confirm that it is safe to use.
    • cristiana
      When I was still recovering my gastroenterologist suggested I bought lactofree product as I was very bloated.  So I bought some from the supermarket and from memory, I drank a nice big glass of milk - and it went right through me literally within an hour or so, if my memory serves correctly.  I came off dairy completely next and it worked like a charm, but started to reintroduce quite gradually it as I missed it! To this day, if I overdo dairy products, they work like a mild laxative.  I've never wanted to give up milk completely as I like it so much, and my mum had osteoporosis and it's an easy way of getting calcium.  But it doesn't really 'sit' well with me.   You may need to experiment a bit as when I was healing certain dairy products were worse than others - I could cope with one brand of Greek yoghurt, but I got extremely and painfully bloated with another brand of live British yoghurt.  
    • wellthatsfun
      i have been strictly gluten free for 7 months. this includes avoiding anything that may contain gluten and making sure surfaces and appliances are clean. i am 18 years old in australia and my tTG-IgA results were 69U/mL, pretty low compared to most people's, for reference. i feel the exact same as before. sure, i was pretty much asymptomatic/silent. the worst i'd get was occasionally bad stools and pitting of the nails/brittle hair since early childhood - and i was diagnosed with low iron and vitamin d which checks out due to easy bruising and such. but those symptoms have remained. maybe i'm jumping the gun, sure. i know it can take years to fully heal. but being over half a year in, i feel that i should be, y'know, healing. i'm nearly at my wits end and wondering if i should have a piece of bread or something to see how i go - to see if i possibly have refractory? my mental health is declining as i feel myself wanting to bang my head against a damn wall out of frustration every day. cravings haven't gotten better. look, i love the stuff i still can have, like salads and such. OH! i haven't lost any weight, which is mind boggling considering i eat very healthily now! i've always been on the chubbier side which is atypical of coeliac. i just don't know what's going on with me. i try to remain hopeful but i'm just so sad all the time. thanks for reading  
    • trents
      @Charlie1946There is a PM (Personal Message) tool built into the forum website that allows you to send a private message to other forum users. Just hover over their name with your mouse cursor and the menu containing that tool will pop up. This is useful if you want to communicate with an individual without everyone else involved in the thread seeing it.  Are you realizing that in my PPI taper down recommendations in an earlier post above, I was responding not to your posts but to @Caligirl57? If you must use a PPI, I certainly would advise taking the lowest dose that is effective for you.  
×
×
  • 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.