Other Double Dq3 People Out There?

[JenKuz]

Hi All,

So I got my results back from Enterolab and I'm HLA-DQ3,3 (subtypes 7,8). Does anyone eles have double DQ3? I searched a bit for info on DQ3, but only found info from folks who had it with DQ1 or DQ2. I'd love to share symptoms stories with other DQ3's out there.

[Miriam3]

Hi Jen,

I did a search and found your thread after my enterolab results just came back. If you're still around the boards, I'm another DQ3 (Subtype 7,9). Here's what I got after a little over a month of gluten free (wish I had done things in a different order now!) But gluten-free has done me wonders of good and I'd be happy to exchange symptom stories with you:

A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value

Fecal Antigliadin IgA 10 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 7 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 893 Units (Normal Range <300 Units)

Fecal anti-casein (cow

[nora-n]

Hi All,

So I got my results back from Enterolab and I'm HLA-DQ3,3 (subtypes 7,8). Does anyone eles have double DQ3? I searched a bit for info on DQ3, but only found info from folks who had it with DQ1 or DQ2. I'd love to share symptoms stories with other DQ3's out there.

You might get more meaningful hits with a search if you type in DQ7 and DQ8 because that is what that means.

DQ8 is an official celiac gene and DQ7 has also been described as a gluten-sensitive gene because it is so similar to DQ8. But the DQ8 should be enough anyway.

Both DQ7, DQ8 and D9 are subsets of DQ3 and quite similar.

Here something about DQ7 being a celiac gene too:

Open Original Shared Link

[JenKuz]

Thanks so much for the extra information, Nora.

Miriam--I thought I was the only one out there!

Yes, it seems we both have similar manifestations; I also had a really high fat malabsorption score. I suspect it still is, since I've had a rough summer for glutening, and my responses seem to be getting stronger. I haven't quite been able to bring myself to stop eating out but I think I'm going to have to.

I feel pretty sure that I've had gluten intolerance in a mild form for a while, but the really severe symptoms seem to have been sparked by a bout of food poisoning, which was a rather unfortunate red herring.

I find I'm pretty susceptible to food illnesses now; more than I used to be. Sometimes it can be chalked up to glutening, but other times I know its food poisoning because of fever and vomiting, and it happens much much more often than it used to. I don't know if that's just from the damage to the guts letting more viruses and bacteria in, or a frenzied gut immune response, or what, but it's not fun.

My diagnosis was, as for most people, problematic. I had an endoscopy and a colonoscopy. At then endoscopy, the doc saw inflammation in the stomach, and took a biopsy to rule out h. pylori. But for some reason he decided not to scope any further down than the duodenum, and he didn't take any biopsies of the small intestine. In the colonoscopy, in histo, they found high numbers of eosinophils.

The doc said that was probably left over from the parasites I had "probably" caught while in Africa. From that I gleaned that the doc was a moron, because eosinophil response is limited to 6 to 12 hours in circulation. I had returned from Africa a year before, and had taken full rounds of anti-parasitics on returning, as a precaution. I had had three rounds of negative tests parasites (and assorted other gut infections) over the course of that year. So what he thought eosinophils would still be doing hanging around, I don't really know.

My suspicion is that they are involved in the on-going gluten/soy intolerance. Eosinophils normally respond to IgE type antibodies more than IgA, but they do have IgA receptors, and have been shown to respond to the binding of those receptors, so it seems that IgA involvement is frequently overlooked.

Now, my doc said that the gastritis was probably GERD and inflammation was visible in the esophagus. I dunno. Wicked heartburn is usually my first sign that I've been glutened, and it always sends me re-reading ingredients lists if I get it. This is the daggers-in-the-chest variety, just to be clear, not the burning-in-the-throat variety. I sort of wish the doc had taken a biopsy of my esophagus. Right when I cut out wheat, before I'd started to heal, the heartburn was awful. It could lay me out for a night, because it hurt so badly. I posted a couple times on that subject looking for tips on relief, and those topics are out there somewhere.

So, hmm, what else about my symptoms? I don't really know. Before I cut out gluten, I was nauseous all the time, and had a lot of pain in the intestines. Now, when I am glutened at home, or suspect that I have been eating out, it tends to be more lower-GI symptoms, except for the heartburn. The nausea isn't as bad; or at least, it's not as constant

I've found, given the high fat malabsorption, that when I'm glutened I'm really sensitive to eating too much fat. It makes things much, much worse for me. I also feel like I'm really sensitive to bacterial overgrowth, because usually eating too much starch also seems to prolong symptoms when I've recently been glutened. No gluten/no soy/low fat/no starch is not a particularly fun or easy diet, but I feel so much better that it becomes appealing as a dietary solution. Lots of lean protein, yogurt, fresh vegetables (helps if they're mostly cooked right after a glutening), olive oil, and it's usually not long before I'm back on my feet.....

[EBsMom]

Miriam--I thought I was the only one out there!

I read these posts with interest. My 12 year old ds is a 3,3 (7,7.) His symptoms to date have been mostly neurological - brain fog so severe that he seems to have transient learning problems; he has very mild GI stuff. Have either of you had any neuro involvement?

Rho

[lonewolf]

My 12 yo son is DQ3,3 subtype 7,7 also. His primary symptoms are also things like brainfog, ADD type episodes, mild GI stuff and this funny eye-rolling thing. He's much better off gluten!

[EBsMom]

My 12 yo son is DQ3,3 subtype 7,7 also. His primary symptoms are also things like brainfog, ADD type episodes, mild GI stuff and this funny eye-rolling thing. He's much better off gluten!

NO WAY!!!! My ds has all that stuff, including a funny eye rolling (well, more twitching) thing. He has been so much clearer off of gluten that I can't believe it. He had some educational testing done a few years ago and the tester wrote that he had a very slow processing speed, so slow (compared to his very high scores in other areas) that she couldn't account for it. I really think it must've been the gluten-induced brainfog. I used to notice that his "fogs" were better when he'd had eggs for breakfast, and I gave credit to the protein....but now I assume that it was the lack of gluten. Thanks for responding, Lonewolf!

Rho

[lonewolf]

NO WAY!!!! My ds has all that stuff, including a funny eye rolling (well, more twitching) thing. He has been so much clearer off of gluten that I can't believe it. He had some educational testing done a few years ago and the tester wrote that he had a very slow processing speed, so slow (compared to his very high scores in other areas) that she couldn't account for it. I really think it must've been the gluten-induced brainfog. I used to notice that his "fogs" were better when he'd had eggs for breakfast, and I gave credit to the protein....but now I assume that it was the lack of gluten. Thanks for responding, Lonewolf!

Rho

It is nice to know that my son isn't the only one. I started to notice that on days my husband took the kids to the bakery before school for a special breakfast (big, gluteny scone) he was worse. That was really our first clue that it could be related. I guess I had just assumed that I was the only one in the family with food intolerance problems.

Has your son been tested for Celiac? (Sorry if it's in your signature - I can't see it from this screen.) My son was negative, even from Enterolab, but he'd been gluten light for a long time before any of the testing. We tried the diet 100% anyway, with great results. It took him a while to "get on board", but now he does pretty well.

[EBsMom]

Has your son been tested for Celiac? (Sorry if it's in your signature - I can't see it from this screen.) My son was negative, even from Enterolab, but he'd been gluten light for a long time before any of the testing.

He was tested through Enterolab. He had a positive antigliadin, tTg and a borderline casein....no malabsorption. He'd also been gluten light for a while, by choice. I think on some level he must've realized that certain foods made him feel bad, even though he never said so. He rarely ate bread, wasn't a huge pasta fan, etc. He's always been dairy light by choice, too, so I think that his casein score might have been higher if he'd been consuming a lot of it. He's taken to a gluten-free diet better than I'd imagined he would. In all honesty, Kinnikinnick donuts and Pamela's brownie mix have a lot to do with that, lol! We don't have them often, but it helped him to know that there were some gooey treats that he could have on this diet!

Rho

[Drollchick]

Hi Everyone!!

This is actually my first time posting - I've done plently of reading in the forum, but it wasn't until now that I had the urge to "jump in" on the conversation.

I am a double DQ3 as well (subtype 7,8). My testing was done through Enterolab - in addition to the gene results, I tested positive for Gluten, Casein, Soy and Egg, and my anti-tissue transglutaminase was elevated. So, you can kind of say I hit the jackpot on problems.

It is sad to realize I've spent 24 years (i.e. my whole life) unknowingly poisoning myself. Oh well...I'm content to say "better late than never".

I TOTALLY had the same brain fog symptoms as others described...in fact, the disturbing mental/personality changes are what pushed me to get tested. I definitely had an increasing frequency of digestive problems, but when I started to lose my ability to communicate, concentrate, socialize and pretty much function normally, I really knew something was very, very wrong with me.

Eliminating gluten resulted in 100% improvement of my brain symptoms...my digestive symptoms are still on the rebound (with all the food intolerances, my organs have taken a severe beating), but I FINALLY FEEL LIKE ME AGAIN!!

Tomorrow I get scoped with biopsies, so I'm crossing my fingers that my villi are on the mend.

Lots of Love to everyone in the Forum!!

[Miriam3]

For me (double DQ3, subtypes 7,9) the symptoms have been mostly non-gastro (ice cold hands/feet, eyelid and other muscle twitches, migraines, brain fog, fatigue, bad memory). Does anyone else have the cold hands and feet? I can't tell you how many tests of my thyroid I had to go through because of that! And it was always perfect, no antibodies even. This is when the doctor stopped being interested and I got sent away with no help. Days after I went gluten free I realized I could sit in an air-conditioned room and not be miserable for the first time. BTW, the acne on my back and chest I had for over 10 years went away once I went Gluten-free Casein-free.

I wasn't totally without gastro symptoms-- I always had a baseline level of bloated stomach, gas and constipation, I just got to ignoring it after a while. The thing is, in times of stress or very high gluten intake, the gastro symptoms got scary (vomiting, wracking stomach pains, can't eat ANYTHING without pain).

Nice to compare notes with y'all. Anyone have any feedback on memory function after starting the diet. In some ways my short-term memory seems a little better. But there are still times I find myself way behind other people in what I remember. Can this get better?

[Drollchick]

Here's a list of my life's symptoms (in no particular order):

constipation (birth, teens, early adult years)

diarrhea (past year)

eczema

keratosis pilaris

peeling/flakey lips

cold hands/feet

numbness & tingling in hands/feet

facial twitching

abnormal sleep patterns

delayed development/puberty

irregular menses

joint pain

easy bruising

gastric reflux

brain fog

phases of panic/anxiety/OCD/paranoia

My memory seems to be improving so far...my brain fog is completely gone, and I have very few phases of psychiatric distress now. I got SO sick of doctors wanting to put me on antidepressants!! They never trusted me when I said that I wasn't depressed or crazy. I wonder how many more people are being medicated for something that might be solved by a change in diet.

The same goes for the irregular menses - I stopped menstruating December of 2006 (for no apparent reason). Doctors wanted to put me on birth control to "fix" the problem (which I refused to do). After all of my recent food intolerance testing and subsequent change in diet, surprise surprise: I started my period again!!

Anyway, I'm confident that things will just keep getting better, both mental and physical symptoms. It might take a while for the body to recover and "reset" itself, but it's entirely possible nonetheless.

MIRIAM3 - Try taking Solaray's PHOSPHATIDYLSERINE COMPLEX...a really great supplement to support neurological function.

[Miriam3]

Thanks Drollchick, I'll give that a try. I've been choosing my own list of supplements for a while-- I think it's time to jump on board with something that's already formulated.

[nora-n]

Here is an old posting about amongst other things double dq3:

Open Original Shared Link

nora