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Leg Pain
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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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    • Hi.  I have been reading your post and thinking about how my pain was around diagnosis.  It was above the belly button, I think where you are describing.  At the time I assumed I had a stomach ulcer.   I had been taking Neurofen for an ear problem and assumed it was the NSAID that had caused my stomach ulcer (which I actually didn't have, when I had an endoscopy a few weeks later my stomach was looking great! My small intestine was not!).   Going back to the pain, it was a burning feeling.   My doctor prescribed Omeprazole but it didn't touch it.   In fact I ended up with bad D. which eventually lead to me having all the tests for Celiac Disease.   I still get that pain if I eat oats (pure oats) that are supposed to be OK for most Celiacs.     I get various pains in different places in my digestive tract from time to time, but that burning pain is something I won't forget. The other thing I had that you mention was that pain between the shoulder blades.  I had that - I felt almost like someone was pushing my shoulders down.  So odd. I get palpitations when I am anemic.    I hope you get some answers soon.  It is pretty tough having to keep going from one doctor to another, but sometimes it is the only way.   
    • I sit in an ice bath after a long training (running or riding).  It speeds my recovery, I swear!  
    • Oh, one last thing..... ICE PACKS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! You'll feel better. Hey, you have a tub? Want to join the polar bear club in the privacy of your own home? Fill that thing with cold water & dump a 5 or 10 lb bag of ice in there. I'm serious.
    • I don't care what she specializes in, you MAKE her do a dh biopsy. I'm not being mean. Please understand that. It's just that I've heard this a thousand times before - no, a thousand one hundred!  Here's another thing ~~~ get her to order a eTG aka TG3 serum (blood test). That is specific for dh.  Oh gosh! Don't you just hate the ones in your ears???!!!!! Nah, we hate ALL of them! I swear though, when those suckers get going in & on your ears it just drives you stark raving mad!!!!! You've convinced me there is more than ample reason to strongly suspect it's dh.  Here's a tip..... the patterning the lab will be looking for is very easily destroyed by scratching so pick you out some prime places that are new & maybe, just maybe you haven't scratched them to smithereens thus far, and make some super thick gauze bandages & place them over those places so even if you reach to scratch (& we know you will! right?) the gauze will remind you & hopefully help to protect it. The biopsy needs to be taken from a clear area adjacent to a fresh lesion. No steroid creams okay? Not till after the biopsy. BTW, if she wants to put you on steroids after the biopsy be warned, 99% of the time there is such a backlash of the rash the moment you go off the steroid that you will wish you were never born. A dx of dh IS a dx of celiac disease & no further testing is needed. Please come back & update us after you see her tomorrow. In the meantime you have my heartfelt sympathy. Take those cold showers & grit your teeth. Hopefully you will soon be able to go gluten free & start getting some relief.   
    • Extremely itchy and keeps me up at night to the point I was taking cold showers at 3am.   Currently my ears, scalp, feet, and chin just will not stop itching, my elbows have the rash and look purple. Eventually the rash will heal and leaves scars that seem to be purplish in color. I have not tried gluten free diet yet.  Waiting for all the testing to stop.  The new allergist i am seeing tomorrow specializes in skin disorders.
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