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Neuropathy


Marie1976

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Marie1976 Enthusiast

I am dealing with neuropathy (I guess that's what it is) in my hands and arms. It is sometimes really painful. I used to think it was caused by accidental "glutening" but I am getting it more frequently. Does anyone else have this problem? Is this celiac-related or ... not? Just wondering about other celiacs' opinions/experiences on this. 


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1desperateladysaved Proficient

I don't know.....  I have neuropathy in the form of numbness pretty much everywhere.  There have been times it lessoned, and it isn't at its worse level of all times, but is pretty thickly numb now.  I have read it has to vitamin B, but vitamin B didn't seem to help me get rid of it.  I know time for healing is needed.  One person said their problem cleared after 3 years gluten free.  If I ever get to the bottom of the numbness, I will try to let you know.

 

Dee

LauraTX Rising Star

While neuropathy can be caused my a Celiac ingesting gluten/ untreated Celiac, it can be caused by other stuff, too.  So if you are getting it much more than usual, a trip to the doctor is in order to make sure there isn't another cause.

frieze Community Regular

perhaps benfotiamine would help?

Azenka Newbie

Too much B6 is also a known cause of neuropathy and nerve damage, (a source, but I've read other, better ones years ago) Open Original Shared Link

Other source I've read showed that even 50mg a day can be too much for some. Unfortunately every B vitamin complex seems to have a minimum of 50mg of it. 

B12 deficiency can cause neuropathy, as can folate (it's also a B vitamin) deficiency.

 

Personally, I cannot have coffee or chocolate anymore, neuropathy and mood changes (which is, really, just nerve issues in the center of my nervous system). I can abide chocolate chip cookies in moderate amounts, but that's it. (Yes, the chocolate is always gluten free.)

 

Tea and caffeinated things like red bull do not have anywhere near the severity of problems that having a cup of coffee give me, but if I've had more than a serving, my neuropathy gets noticeable. I would not be at all surprised for me if it's simply linked to reduced blood flow in my extremities in regards to caffeine. Caffeine constricts blood vessels, and poor circulation to, well, anywhere is linked to things like cell death, reduced healing of various other tissues (like in planar fasciitis), and all sorts of other issues. De-constriction of key blood vessels in Muscular Sclerosis, MS, which is *defined* as a nerve disease, is a fairly recent surgical option for sufferers. It's controversial because it's not -supposed- to work, but yet I know someone for whom it's worked nothing less than amazingly.

Anyways, I personally think that the neuropathy I do have (which is nowhere near as bad as the OP's is) is initially caused by nerve damage, and so gets exacerbated quite easily. I also figure I  must have issues with something else in coffee and chocolate besides caffeine.

cristiana Veteran

Hi Marie

 

I'm wondering if you might also have some nerve entrapment?  I read somewhere that celiacs are prone to carpal tunnel etc.  I was diagnosed with ulnar nerve entrapment earlier this year. I have had pins and needles and numbness but I admit it tends to be there mostly when I wake up and wears off.  I have buzzing in my left foot and up my calf: it was worse at diagnosis but still get it, particularly after excercise.  I noticed that as my B12 and iron levels improved, so too has the neuropathy.  Mind you having that said, I have also noticed that when I get pins and needles they last longer than before I was ill.  A doctor told me that when we celiacs have deficiences, our nerves start complaining!

 

Anyway, here's some info on ulnar entrapment.

 

Open Original Shared Link

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    • AlwaysLearning
      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
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      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
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