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Peripherial Neuropathy

Jill0711

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Jill0711 Rookie
Jill0711
Posted

I know that peripherial neuropathy can be related to Celiac; however, in my case, the numbness and tingling didn't start until after I was gluten-free. I have no history of having it except about two years ago I had it as a side effect of a medication. My next thought was vitamin or nutrient difficiency. I thought it was B-12 related so I started eating eggs everyday and it seemed to help. Now it is back. I did have a lot of vitamins and minerals tested, but am waiting on the results. By the way, I didn't start eating the eggs until after I had the blood drawn.

Anyone have peripherial neuropathy as a result of the gluten-free diet? Any advice on how to make it better?

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cahill Collaborator
cahill
Posted

I know that peripherial neuropathy can be related to Celiac; however, in my case, the numbness and tingling didn't start until after I was gluten-free. I have no history of having it except about two years ago I had it as a side effect of a medication. My next thought was vitamin or nutrient difficiency. I thought it was B-12 related so I started eating eggs everyday and it seemed to help. Now it is back. I did have a lot of vitamins and minerals tested, but am waiting on the results. By the way, I didn't start eating the eggs until after I had the blood drawn.

Anyone have peripherial neuropathy as a result of the gluten-free diet? Any advice on how to make it better?

do you have any blood sugar issues ??

the B vitamin deficiencies and blood sugar issues are the first two things I am considering as possible reasons this is occurring for me. I didnt notice it until after being gluten free, but to be honest I was so ill before going gluten free I might not have singled it out from everything else going on.

rosetapper23 Explorer
rosetapper23
Posted

I recently read an article that said that iron anemia can also cause peripheral neuropathy because of lack of oxygen to the cells. Could that be a possibility?

I've had peripheral neuropathy since I was 15 from celiac and it worsened during chemo when I was 50, but it's a lot better now--still there, but better.

IrishHeart Veteran
IrishHeart
Posted

Anemia---iron deficiency, B-12 deficiency or Folate (B9) deficiency--can all cause neuropathy. Since it is quite common amongst us, it is wise to have all those checked. All are remedied by certain foods and/or supplementation if necessary.

Hope you find the reason!!

It's maddening , isn't it?? I burn and tingle and go numb everywhere---like crazy.

I am hoping that it resolves as I have just begun supps. for the folate deficiency I just discovered after I requested the testing. I knew my B-12 was fine, glucose normal and thyroid perfect...then, I read about folate levels in celiac.....go figure. It was B9!!

We have to be detectives..... :blink:

  • 7 months later...
twe0708 Community Regular
twe0708
Posted

So from what I have read so far, you need to make sure your iron, b12 and folate levels are where they should be. Does anyone know if ther are certain foods or drinks we should avoid if you have this? In the last two months I have experienced a burning feeling on my calf. as if i scrapped my skin or have a sunburn No other symptoms and it goes away within 24 to 48 hours. I was experiencing a few months ago that my legs would feel like they were going to give out if I was on them too long, which was weird bc I hadn't felt like I had been on them that long but now I know. I also experience a slight tingling/ numb feeling when I rub lotion on my ankle and top of my feet in the morning, but other than that I don't feel it unless putting on lotion or rubbing my hand over the area. Is it necessary to see a doctor or do we just need to lead a healthy life? I'm tired of doctors!

  • 2 weeks later...
Jamie15 Newbie
Jamie15
Posted

I was diagnosed with small fiber neuropathy they believe was caused by the gluten and vitamin deficiencies I had. Going gluten free and taking D helped quite a bit and gave me a lot of my mobility back. I also take monthly B12 injections to help with the tingling. After still having some pain(burning, tingling), I decided to look into other food intolerances and took a test. Cutting out several other foods I reacted to helped enough for me to get off my pain medicine I was taking daily. I do still communicate with the doctor that diagnosed me but she is across the country so I do not see her. I am hoping my neuropathy was caught early enough for a possible reversal once I get my diet right. I know how frustrating the neuropathy is and hope you find some relief soon.

AVR1962 Collaborator
AVR1962
Posted

I know that peripherial neuropathy can be related to Celiac; however, in my case, the numbness and tingling didn't start until after I was gluten-free. I have no history of having it except about two years ago I had it as a side effect of a medication. My next thought was vitamin or nutrient difficiency. I thought it was B-12 related so I started eating eggs everyday and it seemed to help. Now it is back. I did have a lot of vitamins and minerals tested, but am waiting on the results. By the way, I didn't start eating the eggs until after I had the blood drawn.

Anyone have peripherial neuropathy as a result of the gluten-free diet? Any advice on how to make it better?

Numbness and tingling in the hands and feet? Are these the only neuro issues you are having? Any burning or pins and needles poking feeling?

I'll attempt to answer this from my experiences. I was having a pins and needles poking feeling between my toes, between my fingers and in my eyes off and on for 2 years before my symptoms came to a head. I went to the eye doc, I mentioned this to my doc, no one had an answer. It wasn't all the time, just occasionally.

When I finally got real sick the pain in my feet was bad, at this point I was still on gluten. My feet were burning, I was having tingling and numbing, the pins and needles poking in my feet were constant. I have been off gluten now for 7 months and while the ataxia did go away, I can only keep all the other symptoms away by supplementing with a fair amount of B complex and L-carnitine.

The ataxia I related directly to the glutens. I think though the neuro issues are related to a deficiency. My labs showed very low marks before I started supplements, and doc wants me to keep doing what I am doing as it does work.

What I have questioned though, and maybe this will help you too, is am I having this because my system became so wrecked that my body was no longer absorbing nutrients OR have the nerves been damaged from something else. I honestly felt I was going to be diagnosed with MS, read about how an MRI can show stroke or MS by the location of lesions on the brain. Patients with MS and diabetes have many of the same symptoms due to nerve damage as well but I am assuming their issues are not due to a deficiency. The complex I take is recommended for people with problems with MS and diabetes. I have been tested for diabetes and nothing in my MRI to be concerned about.

I have had plenty of questions myself. I odered a book about neuropathy and another book on diet for nueropathy and I am hoping to learn more.

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Lori2 Contributor
Lori2
Posted

I have had plenty of questions myself. I odered a book about neuropathy and another book on diet for nueropathy and I am hoping to learn more.

Please keep us posted on what you learn. I'm just on the verge of asking for something to help with the burning at night. Still hoping that the nerve damage will heal and wondering what I can do to speed it along.

AVR1962 Collaborator
AVR1962
Posted

Please keep us posted on what you learn. I'm just on the verge of asking for something to help with the burning at night. Still hoping that the nerve damage will heal and wondering what I can do to speed it along.

Will do!

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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
      Gluten related ??

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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

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      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
      Gluten related ??

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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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