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Dq-1 Question
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Did anyone on this forum who was gene tested come back as a DQ-1 or double DQ-1 and then go on to have a positive biopsy? Any info on this would be greatly appreciated!

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Hi Gemini,

I'm curious about others who have double DQ1 as well. My Dad has double DQ1 subtype 6 and has MAJOR issues with ataxia.. balance issues started about 6 years ago...but they didn't put two and two together, walks with a wide gait, had chronic hives for close to four years and no doctors could relieve them. He is considered by the medical community to be "wheelchair bound" although he gets around with a walker and assistance from my mom, but has falls way too often. There are many other things ... difficulty swallowing, slurred speech, arthritis, joint pain... so many things.

After trying to get doctors to listen and test him, I finally went with him to a doctor appointment and asked if they would test him. When they said no, I said... is it okay if he goes gluten free? The doctor said, well, it certainly won't harm him, but its not going to help either. My dad went gluten free in April, and his chronic hives went away, his gait is more normal, his speech is improved, his strength is better. His doctor was stunned to find that out that his 4 years of chronic hives were gone, and is going to try gluten free on 4 other patients with chronic hives that he hasn't been able to treat successfully.

We saw Dr Joseph Murray at Mayo Clinic in Rochester, MN (head of Mayo's Celiac Research Dept and practicing GI) a couple of weeks ago... who said, almost all people he sees with gluten ataxia are wheelchair bound at their first visit, because this doesn't get diagnosed accurately or quickly and there is about a 6 month window from onset to no reversal of neurologic symptoms. I should add to this that my dad was always VERY athletic, agile, active... and for years... you would never have suspected that gluten was doing its dirty work on him. He is now a very different person from the dynamo that he was. Gluten takes its toll in a very very destructive way. Also, people should be aware that 15 percent of celiacs have digestive issues... 85% do NOT. Digestive issues were thought to be key, but they've realized that the people with digestive issues screamed loudly and that's why they were heard... others didn't have those types of symptoms... therefore didn't/don't get diagnosed.... for a VERY long time... if ever. There are so many doctors that are so clueless. Gluten is a systemic poison...and it doesn't affect just intestines (although that is a primary symptom for me personally... it isn't the case for my dad).

Please...if you or someone you love has symptoms like these... and double DQ1... get them to go off gluten PRONTO! It is pure poison to their system. My dad unknowingly ingested the toxic gluten for 80 years and it wasn't until he'd ingested it for 65 years that symptoms showed up.... damage had been done for years and years. My Mom is diabetic and carries the DQ2.5 celiac gene... I have that from her and the gluten sensitive gene from my dad.... an unlucky combination, but I finally was diagnosed with celiac after many many years, and things have turn around 98%!!! I feel like a different person. It scares me to no end that I could have ended up like my dad in 25 years. Don't let them tell you double DQ1 isn't a big deal...its a HUGE deal. :( There are studies being done ... and in fact a paper was publish about it, but most doctors don't stay abreast of the research papers like they should. You'll find it if you Google it.

I don't know if ALL of my dad's issues are caused by gluten, but a good chunk of them seem to be directly related. And I know what it does to me, and I have 1 DQ1 gene. Good luck to you... hope you find the answers you seek.

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m.hadjivassiliou@sheffield.ac.uk

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m.hadjivassiliou@sheffield.ac.uk

Thanks frieze... that's the one! B)

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    • Hi everyone, I've been reading this forum sporadically and have some questions of my own. I'm in my 40s and was diagnosed with celiac last December by biopsy and blood work after months of tests by my primary and then a gastro. My husband, around the same age as me, was dx'd with stage 4 cancer a month later, so admittedly it's took me longer than I'd have liked to learn about celiac. Now I feel pretty on top of my diet. I mostly make my own food - proteins and veggies, with some certified gluten-free snacks in the mix - and am pretty strict about what I will/won't eat at friend's houses or in restaurants (I prefer to go to dedicated gluten-free kitchens whenever possible). I'm doing okay on the diet, but still getting glutened every so often, usually when I let me guard down outside the home. I also periodically see my primary and a naturopath (who happens to have celiac!), but still, I have many questions if anyone would care to answer:

      -FATIGUE. I'm still so tired, fatigued so much of the time. My doctors blame this on the stress of my husband's diagnosis and my periodic trouble sleeping. But even during weeks where I'm sleeping enough (8-10 hrs a day), eating right, exercising as I can, trying to keep stress at bay, I'm still so bleeping tired. Maybe not when I wake up, but by late afternoon. Often my legs even feel weak/wooden. Has anyone else experienced greater fatigue early on after being diagnosed? This will pass, yes? I know I could cut out the sweets and that could help, but also, being a caregiver is hard and sometimes it's nice to eat your feelings between therapy sessions.  

      -SYMPTOMS CAUSED BY FATIGUE? Sometimes I'll have other "feels like I've been glutened" symptoms if I haven't gotten enough sleep, though I'm trying so hard to sleep at least 8 hours a night these days. Hasn't happened in a while thankfully, but there was a point this summer where my insomnia was bad and my arms were achy and I had some crazy flank/back pain I'd never experienced before. For weeks. Doctor ordered me to sleep sleep sleep, taking Benedryl if needed. I did, and the symptoms went away, but weird, yes? Has this happened to you? I ask because I want to make sure I'm getting all strange pains tested to the full extent if there's a chance it's something other than celiac. I do sometimes still feel that strange side stitch after a CC incident.

      -SKIN PROBLEMS. I have had a smidge of eczema since I was a teen and it - and the dermatitis herpetiformis I've acquired with my dx - are out of control right now. I recognize the connection with stress, but also, has anyone found any great natural remedies for DH to stop the itching? I've tried so many useless ointments and medicated creams, a number of them given to my by a dermo months ago. I see my naturopath this week, but thought I'd ask here too.

      -MOSTLY gluten-free KITCHEN GOOD ENOUGH? My husband is supportive of my diet and mostly eats gluten free meals with me, but we still keep a gluten-y toaster for him and the gluten-y dog food in a corner of the kitchen and he still makes the occasional meal with gluten for himself on his own cookware (ravioli, pizza, mac n cheese, etc). Or sometimes I make eggs/toast and the like for him when he's too sick to move. Otherwise, we're militant about how we cook, which cookware we use, etc. He even has a kitchen nook off our den where he makes sandwiches. But sometimes I wonder if having two separate sponges in our shared-ish main kitchen is enough and I should just banish all gluten whatsoever from the kitchen. I can't be the only one with a mixed kitchen, right? How do you do it if you have a mixed-eating family?

      Thank you so much!  
    • Hang in there!  Count your blessings.  Do something you like to do and relax. I know that is hard to do as a young mother (as I sit here in the kitchen sipping coffee quietly as my teenager is sleeping in after a late football game last night where she marched in 90 degree plus weather in full uniform).   But seriously, take a few minutes to relax!  
    • Meredith, this is very true. A colonoscopy is for diagnosis of the lower intestine, endoscopy for the upper intestine.  How did your doctor interpret the tests? I suggest you read the link Cycling Lady gave you because it contains a lot of good information. 
    • Sorry, but this product (supplement) is not even certified gluten free.   Seems odd that a product geared to Non-Celiac Gluten Intolerance would not take the extra step of getting certified.   I guess I am a Nervous Nellie, especially after the reports that several probiotics were contaminated with gluten.   https://celiac.org/blog/2015/06/probiotics-your-friend-or-foe/
    • Thank you for posting that. I've had a lot of that bloodwork done and everything is normal. At the peak of this belly bug I had blood work done and my white count was fine. I think it's just my health anxiety scaring me into thinking this is something scarier (to me) than celiac. Maybe the anxiety will subside once I go gluten-free. The anxiety is brutal.
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