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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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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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