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

[LynneM]

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

[Nantzie]

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]

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?

[Nantzie]

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.

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]

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]

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]

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.

[confused]

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]

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]

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

[confused]

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]

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]

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]

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]

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 ...