I am highly gluten-sensitive (very high gliadin -- over 80), and I am wondering if I should have a DQ1 test run. I do not have Celiac (biopsy, DQ2/8 negative).

My question: For the past few years prior to my diagnosis, I have been having abnormal (for me) difficulties with typos, finding the right words when I try to explain something, especially when someone asks me where to find something in the house -- I have to get up and show them, I cannot explain it . . . and brain fog. Oh my gosh, for a while I felt as though I couldn't read even the most simple set of instructions without having a nervous breakdown!

I was never this way. I always used to love instructions. Nerd, yes, I know, I know.

I have never been the most coordinated person in the world. I don't fall a lot, but I do have to really watch myself. I have taken a few life-threatening falls in my life, especially right after waking in the morning.

Simple things such as going down an elevator may take me a little longer than most, and good grief, I still cannot figure out how people in airports can get on an elevator with their luggage behind them. Things like that are impossible for me.

Numbness in arms and hands, especially at night.

Numbness in legs before being diagnosed. During my gluten challenge, numbness in legs became almost intolorable, especially at night. I could not keep my legs still for more than a minute, and I would awaken numb quite frequently.

MUCH of this has gotten better since going gluten-free, thank goodness!

The typo thing really haunts me, though. When it started to happen, it bothered me, but over time, it really freaked me out! It still is not completely better. I am a writer. I know how to type and write. So horrible!

So, I guess after all of this, my question is if it would be smart for me to be tested for DQ1. And if yes, why? If I am already eating a gluten-free diet, does it matter at this point?

THANK YOU for any assistance.

Also, ringing in my ears has become more pronounced.

All of those cognitive symptoms, and neurological symptoms... can be caused by B12 deficiency... often found in those with gluten sensitivity.

If you aren't already, I would consider taking mega dose B12 (1000-2000mcg daily), preferably the methylcobalamin type. Along with a multivitamin or B-complex.


Please read these two pages... especially the symptom page. I think I had every symptom you mention. I can totally relate to the brain fog, word finding problems, typo problems (also drives me nuts... still... because I will mix up words that I KNOW BETTER!), numbness... would wake up with entire body numb, ringing, buzzing and clicking sounds in my ears (completely resolved!), and much more!
http://jccglutenfree.googlepages.com...ciencysymptoms
http://jccglutenfree.googlepages.com/b12deficiency


Now, having said that, gluten sensitivity alone can cause these symptoms, too. But, very often B12 deficiency is part of the problem. Afterall, celiac disease/ gluten sensitivity is a disease of malabsorption. In addition, B12 deficiency can be caused by another autoimmune disease, pernicious anemia.

Have you had a B12 level taken at any point? If you are going to ask to be tested, don't start supplementing until after you have the blood drawn because the blood levels can come up quickly (although it can take months for symptoms to resolve). But, if you don't think you will be tested... I would definitely consider supplementing B12. The B12 deficiency link above confirms the dosage of 1000-2000mcg as standard and safe for treating B12 deficiency.

While in theory, B12 absorption will improve once the gut is healed, many people find they need it for life. Some people do have pernicious anemia and that absolutely requires rest of life treatment. Pernicious anemia is commonly found in those celiac disease, thyroid disease, etc.

As for testing for DQ1... We did do the testing after a year or two on the diet. I thought for sure my family would have the main genes because our medical history read like that of classic celiac disease. But, instead I found my daughter and I both had double copies of DQ1. It was a matter of satisfying a curiousity for me, but was also validating given Dr. Hadjivassiliou's work that shows 20% of his gs neurological patients to have HLA DQ1. It sort of explained why we didn't pass the "celiac disease" tests (and we did seem plagued with neurological symptoms) but it still didn't do too much to help other mainstream doctors buy into our non-celiac gluten sensitivity... at least back then (8 years ago).

If you can afford it and are curious... go ahead and order up the genetic testing. Otherwise, it doesn't change your course of action. You already know you need a gluten free diet.

We did the genetic testing via Enterolab because it doesn't just tell you whether you have the main celiac genes or not... it tells you what HLA type you are.

Thank you so very much! Excellent information!

My physician just ran a check on my vitamin levels. We'll see how things are doing soon.

In the meantime, I must say that I find that when I take a sublingual B-12, along with a B-multi, my numbness improves.

All of this is so interesting.

Again, I really appreciate your response. I hope more will reply. I want to learn all I can.

Best,
Lyn

If you have been supplementing sporadically with B12, your level might show higher than it was at its lowest point. One needs to get the level up into upper range, and keep it there... and over time many to all of the symptoms may resolve. For me, lots of things improved within a couple of months, but other things slowly improved over a number of years.

Some more excerpts on neuropathy in gluten sensitivity:

Cognitive decline can also be caused by both gluten sensitivity and B12 deficiency:
http://jccglutenfree.googlepages.com...cline-dementia

Just be sure to get the results yourself and read them. My doctors have done this, told me I am doing great, then I see the results, and realize I am not doing so good. My ferritin level was near anemia, my Vit D level was 25, and many of the other levels are very low in the "normal range".

I too am a double DQ1, and considered not celiac, yet I am not so sure I believe them, and my PCP tells me he knows I am celiac...so who knows. I too have/had ataxia, and all of the symptoms you mentioned. I still deal with the brain fog, typing the word I want in connection to what I am thinking is sometimes a real issues for me.

Do the gene test, but also stay gluten free.

Deb,

Its like "sure" we don't have the disease, we just have all of the complications that go with it.

Cara

EXACTCALLY!!!!!!

Hi!

I know you posted this topic a while ago, but I was interested in your 'typos'. I always find, that I write a completely different word to what I intended. There is one little specific one that I do and its swap 'my' and 'me' around. That one is neither here or there really, although I always do that.

Is that the type of thing you do?