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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

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I've been getting pretty bad bilateral leg pain/weakness off and on for a long time. It seems to be worse in the morning, and is sometimes accompanied by tingling in my feet or hands. Is this something that is Celiac related? I've had my thyroid levels checked as many family members have Hashimotos , but i'm fine. I also had normal calcium, magnesium and b12 levels.......I do have a slight D deficiency.

Does anyone else get this? I've been gluten free for a couple months......will this go away?

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yes, I think it is related. Mine started after going gluten free, and lasted for about 6 months. I would get sharp shooting pains across my shins, and had tingling in my feet and ankles. Thank goodness, it stopped for me.

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I've been getting pretty bad bilateral leg pain/weakness off and on for a long time. It seems to be worse in the morning, and is sometimes accompanied by tingling in my feet or hands. Is this something that is Celiac related? I've had my thyroid levels checked as many family members have Hashimotos , but i'm fine. I also had normal calcium, magnesium and b12 levels.......I do have a slight D deficiency.

Does anyone else get this? I've been gluten free for a couple months......will this go away?

I have this as well - i think it comes from a combination of too many carbohydrates (sugar/ etc) and a lower b12 even though your b12 came back "normal" you still may need more and/or an injection every once in a while. I've been told by my doc that I *don't need* b12, but when I stop for more than 6 weeks, I have more inflammation etc. The theory is when I'm gluten free for two years or so, I shouldn't need it by injection any more.. but until then I still get it.

The tingling can be diabetic neuropathy, b12 related, magnesium, zinc and/or related to high blood pressure, high levels of plaque/ cholesterol, inflammation generally or heavy metal deposits. So it could be a few things - if you go gluten free for 6 months and aren't noticing a difference, I'd get another opinion... but maybe in the meantime just focus on eating meat/veg/fruit diet and keep all the refined carbs until you know you are feeling better?

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I've been getting pretty bad bilateral leg pain/weakness off and on for a long time. It seems to be worse in the morning, and is sometimes accompanied by tingling in my feet or hands. Is this something that is Celiac related? I've had my thyroid levels checked as many family members have Hashimotos , but i'm fine. I also had normal calcium, magnesium and b12 levels.......I do have a slight D deficiency.

Does anyone else get this? I've been gluten free for a couple months......will this go away?

I get leg pain when I eat gluten. It's more like restless leg symdrome. They ache (especially at night) and I feel like I must move them in order to feel better. I was glutenated last week and my legs have been bothering me for the past few nights.

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I get leg/hand pain/numbness if I don't take all my vitamins/minerals/calcium/and EFA's. I'm newly diagnosed Celaic, gluten-free for 7 weeks, and pain the in my hands/feet is getting less and less as I move forward and take the supplements. For me it has all been Celiac related. Hope you get to feeling better so soon!

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I had bilateral peripheral neuropathy before going gluten free. (That's in fact why I went gluten free, hoping to make it better.) Neuropathy can be very painful, and can cause tingling in feet and hands as well. Ataxia can cause weakness in limbs. If you google "gluten neuropathy" and "gluten ataxia" you'll come up with some links on new research being done by Dr. Hadjivassiliou. He's researching the connection between gluten and nerve/brain disorders.

Maybe what you're experiencing is nerve damage caused by years of eating gluten. Nerves are very slow to heal, so perhaps in a few more months they'll start to get better.

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I was having significant problems with episodes of muscle weakness, although I've always taken a multi-vitamin, along with extra calcium and vit. D. The weakness was fairly constant, but I would have episodes where i would suddenly be almost unable to stand or if I was carrying something that wasn't necessarily that heavy I would have to put it down. Through a bit of online research I learned that potassium supplements can help with muscle weakness. Potassium levels in my blood were at normal early on after being diagnosed with celiac, but I've since learned that this doesn't mean the muscles necessarily have their needed supply of potassium in those with our condition. So, on a hunch, I decided to try the extra potassium. By day 4 of taking them, the episodes of weakness had improved by 50%, and now, about day 7, the episodes are much fewer and are about 75% less in intensity. The supplements I take are only 50 mg, plus I eat a banana every day (along with lots of other fruits and veggies), and I am now thinking of taking 2 supplements a day to see if taking more will completely reverse this annoying weakness.

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I was having leg pain and occasional weakness before I got diagnosed -- some of it was bone pain (ache) and some was more neurological. My vitamin D was low/low-normal, and my rheumatologist put me on mega-doses of D. The bone pain started to go away, even before I knew about the celiac and went gluten-free. The gluten-free diet has resolved the weakness and neurological symptoms.

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I was just diagnosed with celiac via biopsy about a week ago. I haven't seen the nutritionist (scheduled for late Nov) and am trying to be gluten-free while waiting. Since dx, I have also started to have leg pain and severe knee pain, bad enough to side-track any exercise. Any recommendations for tests on vitamin levels the Drs should be running? I have already scheduled an appt with a Rheumotologist due to issues resembling Sjorgrens?

Cora, 51 and just learning about this...

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    • Almost 2 years into my diagnosis after losing about 35-40 pounds I have now added about 60 with clean gluten free eating. I also changed jobs which for me has been much more of a physical change, thus needing more calories I have finally been able to put back some pounds. It is possible, for me the clean diet which helped restore my guts let me finally start absorbing the nutrients I was lacking. 
    • Hi Niza, Try to eat lots of protein.  Meats, peanut butter, avocadoes, things like that.  Try to avoid processed (pre-made) foods like frozen pizza, cereals, pot pies, cookies etc.   There gluten-free versions of many of these foods, but they are best saved for later on like 6 months after going gluten-free. If you are just starting out gluten-free, eat a simple diet of mostly foods you make yourself at home.  Also, try not eat eating any dairy (milk, cheese etc) for a couple months.  Oats are also a thing to avoid eating for a couple months.  You may not have any problem with dairy or oats, but some people do. Welcome to the forum Niza!
    • I am. I went undiagnosed for years and years and I honestly thought I was dying. I had been trying to gain weight even before my diagnosis and could barely gain a thing. I am so relieved to actually have an answer as to WHY! I was just diagnosed last weekend so I still have a lot of internal healing to do after years of villus atrophy. I have been drastically underweight for some time now, although I am slowly gaining. I am currently eating around 2,500 calories a day and not doing any strenuous exercise. I am only 74 lb (at 5'2") and I started out at 67 back in the beginning of December. I eat as much as some of my guy friends eat in order to "bulk" when they are lifting heavy at the gym and yet I still seem to gain at a slower rate. Just goes to show how messed up your intestines can become after years of abuse. 
    • Hey Deb, In theory (based on some studies), your small instestine should heal pretty fast (within weeks), but often there is collateral damage that can take longer (like your bone pain).  For me, personally, a gluten exposure can set me back three to six months.  My antibodies can last over a year.  And worse, I now developed autoimmune gastritis and hives.  Yikes!   I had  some hip and rib cage pain when I was first diagnosed.  Two months later I fractured some vertebrae.  I had been undiagnosed for so long, that I developed osteoporosis.  I assume that once on a gluten free diet, your pain should diminish based on a strict adherence to the diet and  your previous experience.   I hope you feel better soon!  
    • I know-pretty dumb. I'm usually very careful. I didn't check into it. Thanks for reply. DebLee
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