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Do You Ever Get Nerve Pain Like This? And Why Am I Getting This Now?

Sarah8793

By Sarah8793
in Coping with Celiac Disease

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Sarah8793 Enthusiast
Sarah8793
Posted

Before going gluten free (and casein) I never had nerve pain like this. I'm suspecting that this is gluten related but not sure. I get random pain in my finger tips and toes, tops of my feet, shoulders, arms, and neck. It comes and goes throughout the day and I never know which body part will begin to ache at any moment. If it is from gluten then it is definately from cross contamination only because I am not eating anything that has gluten added to it. And if it is from gluten then it starts out intense and 2 weeks later is winding down. Anyone else have experiences like this in which it seems to be your nerves? Also, I know that as we go longer without gluten we become more sensitive but this seems ultra sensitive to me. And it seems like (from the nerve pain) that it is harming my body more now than before. Is this crazy? I never had nerve pain before. Totally frustrated now.

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marciab Enthusiast
marciab
Posted

Sarah,

When I saw that you were having pains in the top of your feet, I just had to reply. I did this too for about a month. Prior to that I had a fluttering feeling in both fore arms for about a month. Presently I am getting a twitching sort of feeling in my right eye, but no real twitching ...

Since, my body has been healing since going gluten free, I am assuming that it is nerve endings healing. I had mild nueropathy in both hands and feet for over 16 years. The good news is that it is gone now, but the bad news is that my hands are even more sensitive to cold ... I have Raynaud's ...

I'm still figuring out my reactions to getting gluttened though. The last time I was gluttened I was awake until 6 am and felt depressed off and on for a few days.

Hopefully some one else has had this experience too. Marcia

Sarah8793 Enthusiast
Sarah8793
Posted
  • Author
I'm still figuring out my reactions to getting gluttened though. The last time I was gluttened I was awake until 6 am and felt depressed off and on for a few days.

Hopefully some one else has had this experience too. Marcia

Hi Marcia,

Thanks, I hope it is healing. My reactions to gluten seem to vary, but I have had the insomnia like you and then the blues. It is awful, because I stay in bed all night thinking I will eventually fall asleep and then around 5:00 a.m. I finally do. :blink:

Nancym Enthusiast
Nancym
Posted

I went through a period of weird nerve things happening. I've been taking a vitamin B complex and additional B12 because neuropathy can be caused by low B vitamins. Anyway, it has gotten MUCH better.

georgie Enthusiast
georgie
Posted

I have lots of nerve tingles in my feet and hands. My legs feel numb from knees down. I have very low B12, and need injections every month. I was doing better on weekly injections - so may have to go back to Dr and ask what to do.

darlindeb25 Collaborator
darlindeb25
Posted

It is true, when nerves are healing, they twitch, buzz, and other things, similiar to when they are dying....I was sick with celiacs for such a very long time before going gluten-free. My neuropathy was diagnosed over 3 yrs before we found out about celiacs. Mine started as carpal tunnel, then my toes became involved, my hips, and neck.

Last year I had a doppler done and they found periphreal neuropathy in my upper body and determined I have small fiber neuropathy in my lower body. I take 2400mcg of B12 daily and was able to slow the progression. This summer I found that it was slowly progressing again, some days I drag my feet, I trip up stairs, I have this terrible pinched nerve feeling in my shoulders and neck, and I suffer with dizzy spells--some days much worse than others and when someone stands close to me, as in hugging, I tip over backwards when I look up to them.

I truly hope yours is a reversal of the damage. Many celiacs find the damage repairs itself.

RiceGuy Collaborator
RiceGuy
Posted

I concur about the B12. I take the sublignual type.

As for my nerve pains, I narrowed it down to nightshades. Once I got those out of my diet, I started feeling better, but unfortunately it took quite some time to figure it out, and I think I now have a lot of nerve damage to be healed. It seems to be a very slow process, and as I research things, I add certain types of nutrients to my diet in order to maximize healing. Proper amounts of the right proteins and fats (plant-derived) are my latest focus. I wish I could help you more, and in a week I should have additional information once I've received some new stuff I ordered. I hesitate to make a recommendation until I've tried it, so I know whether it helps first. I'll try to post an update then, or feel free to PM me.

Hope your recovery is quicker than mine...

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Sarah8793 Enthusiast
Sarah8793
Posted
  • Author

Thanks to all of you for your help! Many of you have mentioned B12. I had mine checked and I was told that it is in the normal range. Maybe I should be taking it anyway. I'll take a closer look at the nightshades family as rice guy mentioned. I feel so fortunate to me a member in this forum and receive such support. Thanks!

Sarah

RiceGuy Collaborator
RiceGuy
Posted
Many of you have mentioned B12. I had mine checked and I was told that it is in the normal range. Maybe I should be taking it anyway.

I've read that the body robs B12 from various places in order to keep blood levels up. It wouldn't surprise me one bit if that's true.

Nancym Enthusiast
Nancym
Posted

Do you know what the level of your B12 was? It can be low normal and cause issues. Lots of times doctors would treat for deficiency at the low end of the range. Technically in-range, but low enough that some patients have issues. It is a vitamin you don't store so unless you go crazy with it, you really can't over dose on it.

RiceGuy Collaborator
RiceGuy
Posted
Do you know what the level of your B12 was? It can be low normal and cause issues. Lots of times doctors would treat for deficiency at the low end of the range. Technically in-range, but low enough that some patients have issues. It is a vitamin you don't store so unless you go crazy with it, you really can't over dose on it.

Actually, the body can store B12 for decades. However, you'd need to be obtaining more than your body uses in order to build up reserves.

Research shows it is absorbed in smaller doses more effectively than higher doses, and around 3000 mcg is a typical daily recommendation, spread out over the entire day rather than all in one dose. Apparently there is little if any benefit from doses above around 5000 or 6000 mcg. I take 1000 mcg three times per day. There is no known toxicity level, so getting extra isn't supposed to cause any problems.

Sarah8793 Enthusiast
Sarah8793
Posted
  • Author
Do you know what the level of your B12 was? It can be low normal and cause issues. Lots of times doctors would treat for deficiency at the low end of the range. Technically in-range, but low enough that some patients have issues. It is a vitamin you don't store so unless you go crazy with it, you really can't over dose on it.

I don't remember the exact number but I'm thinking 500 something. I remember thinking that it was in the normal range but not near the top. I'm going to look for the sublingual type to start taking.

RiceGuy Collaborator
RiceGuy
Posted
I'm going to look for the sublingual type to start taking.

One I considered is Freeda brand, which specifies gluten-free. Some say wheat-free, but stop short of specifically saying gluten-free. The one I ended up with is from Source Naturals, as they are one of only a few others that state gluten-free. It's also the methylcobalamin type, which is apparently the best to take. It doesn't have a potency guaranty, but the ones that do typically cost far more.

After much research, I came to the conclusion that the methylcobalamin type is favorable over the other kinds. Most are cyanocobalamin, which must be converted by the body before it can be utilized, and actually has a cyanide molecule that the body has to dispose of. I didn't like the sound of that. Here's an article explaining these forms:

Open Original Shared Link

Sarah8793 Enthusiast
Sarah8793
Posted
  • Author
After much research, I came to the conclusion that the methylcobalamin type is favorable over the other kinds. Most are cyanocobalamin, which must be converted by the body before it can be utilized, and actually has a cyanide molecule that the body has to dispose of. I didn't like the sound of that. Here's an article explaining these forms:

Open Original Shared Link

Thanks for the B12 information.

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    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      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
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      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
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      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
      My only proof

      By AlwaysLearning · Posted

      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
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      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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