Double Dq1s-what's Your Story?

[oceangirl]

Hi. I'm interested in a bit of an informal survey of those of you who have two DQ1 genes and what your symptoms are/were and perhaps what other food intolerances you have. Just something as brief as can be. Also, if anyone knows of any other labs/researchers who recognize DQ1 as related to gluten-intolerance besides Dr. Fine's Enterolab. For instance, does Prometheus recognize these genes as potentially problematic? There are a few of us on this board who seem to have no fun being DQ1s and it would be interesting to hear from others.

For my part, I am DQ1 , sub-types 5 and 6 (Enterolab), positive anti-tissuetransglutaminase, inconclusive biopsy, positive dietary response. Symptoms since I was 11, diagnosed with ulcerative colitis (think that was wrong), then IBS for 35 years and after a year of the following symptoms, went gluten-free after positive bloodwork: alternating diahrrea and const., excruciating abdominal pain, distention, bloat, gas, bone pain, joint pain, red eyes, mouth ulcers, lip sores, intense left-side pain at night, deep depression, feeling lost, forgetful, tailbone pain (intense at night), fuzzy throat, inability to concentrate... MUCH improved, not quite symptom-free. Also avoid: soy, corn, legumes, nightshades and now have a bit of dairy (hard cheese).

Anyone with experience with these two genes or information on them I'd love to hear from you and thank you so much everyone in advance!

Wishing for good health to all,

lisa

[gfpaperdoll]

Hi I am double DQ1 & my grandson is also & one granddaughter we are the only ones that have done the test thru Enterolab. I do have a sister that has double DQ1.

Me: continuous "colic" when I was born, childhood = bone pains, anemic, broke several bones, tired constantly, very bad hayfever stuff, slept a lot, introverted book reader, bad vision, bad teeth with cavities, headaches, vomiting, constipation, we all had ear infections we thought everyone did, every illness that was going around I got it except polio thank goodness I missed that one, nosebleeds, appendics out, ovary problems, walking pneumonia for 1 year, high IQ but my teachers thought that I was umm slow, felt awful most of the time, food allergies but we did not know it then, adult: weight gain, constipation, more anemia, more fatigue, more feeling "out of it" when it came to my brain, diagnosed food allergies, more bone pain, broke an ankle, broke my knee, lost sight in one eye, high blood pressure, slight depression, gall bladder problems right before I went gluten-free, bouts of the "flu" now know it was a gluten flare because I do not have those anymore, bladder infections constantly, peridontal disease, acne rosea (gone now), shingles, I am sure there is more stuff that I am just forgetting, but you get the picture always sick but nothing anybody could really find wrong...

A couple of things saved my life. When I was 25 I got myself & my son tested for food allergies here in Houston at the new McGovern Allergy Clinic. I was severly allergic to barley & oats plus a bunch of other foods. Looking back I was probably also allergic to wheat but they did not tell me, maybe because I was allergic to so many foods, I remember the nurses whispering at the door...

I could never eat anything that was bread that was bought because everything had barley in it. Like bagels & donuts & hamburger buns etc. So I only ate bread stuff at home & it was homemade, ugh no wonder I was always sick breathing in the flour.

Then 13 years ago, I went mostly wheat free thinking I had an allergy to wheat. My energy level went thru the roof & the bladder infections stopped. But I would still get sick occasionally when I would to to my son's house & eat wheat etc, come home & started back eating no wheat. 3 years ago one doctor thought I had leukemia, I was living temporarily near a whole foods so I started eating a lot of sour dough bread, thought if I was going to die I was going to die happy, well then I really got sick & had to quit eating the bread, found out that I did not have leukemia, it was something else wrong with my blood that got fixed when I went gluten-free. Then I found out about celiac when I was researching the disease that my father's brother had died of many years ago, we had found some cousins. He died of Hemochromatosis, which is too much iron in the blood, it is one of the signs of celiac & it seems that a lot of the celiac people have this in their families also. this Hemochromatosis comes from a certain group of people which I cannot recall at the moment but I think it is the Vikings. there is a great website for hemochromatosis.

then as an adult I exercised. I think this did a lot to keep me alive, I always knew I had to exercise & I was like well why don't all these other people have to exercise to stay healthy?

I am very interested in your tail bone pain, I have just started getting that this year. Any idea what causes it? Mine comes & goes. I am dairy free but I cheat on dairy. Are you dairy free?

Sorry this is not so brief !!

[oceangirl]

Hi. Thank you for posting and I'm so sorry you had to go through all of that! The tail bone pain seems related to the gluten; it's gone now, I hope for good, but I do still get pain in my left hip bone from some foods. Weird, I know. Those pains are always worse at night for me, maybe because I'm digesting dinner? I wish I had some better answers for you. I did have a bone density done- have you had that checked out? Mine was okay but I'm also a runner so I think I've been helping my bones by doing that for 27 or so years. I hope other DQ1s post; it will be interesting to see what they say. May you feel and be well!

lisa

[luckygfme]

subtype 5,5

I started getting stomach trouble when i was 10 right around the time i had mono. But they'd be really rare. Then in beginning of 2004, things got bad. Everyday, It was either constipation or diarrhea, and lots of mucous a long with both :/. i've also had panic attacks,depression and was recently diagnosed with hoshimoto's. everything went away after going gluten free but now came back in full swing, after 9 months about :/

[Kelleigh]

Subtype 6,6 (can someone explain what that actually means??)

Have had bone pain since I was a kid (I'm 38) - told it was just "growing pains", weight issues since I was 13 even though I exercised as much and ate no more than anyone else - it's just been piling on ever since. Although, about 10 years ago I was diagnosed with Migraines and anxiety and I decided to give up meat and dairy and just started eating a lots of beans and rice (practically no gluten more by accident than by conscious choice) and I lost a lot of weight, but then a year or so later started adding gluten & dairy back in. Didn't put two and two together until recently. Anyway, often feeling lethargic - never understood that "full of energy" feeling after work-outs - always wanted a nap, depression, never feeling quite "right". The last few years have been the worst - constant migraines, leg pain, chest pain, and other weird pain that made no sense, exhausted all the time, super emotional, planter faciitis, more constipation than D, bloating, stomach pain, pain in my right side, more colds than I've ever gotten in my life, forgetful, inability to concentrate, constant nausea, dizziness, etc.. DX with Hashimotos earlier this year, then my doc made the connection between Hashis and gluten and, for me dairy & soy, and I've been feeling much better since giving it up (still working on the Dairy). Most of the weird chronic pain went away and I feel more clear-headed and the nausea that I've had for 5 years is finally gone!! Some other symptoms are still there, but over all I barely notice because I feel so much better. I've been feeling, though, that as my body heals, it's taking one "layer" of this off at a time. Things that came up before - ie cronic hip pain - and went away, comes back for a while, gets fixed, then goes away for good. Weird, I know.

K