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Neuropathy

k2626

By k2626
in Coping with Celiac Disease

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k2626 Explorer
k2626
Posted

How common is neuropathy -ie muscle twitching all over, stinging/stabbing pains (electricul feeling)

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naturally gluten free Newbie
naturally gluten free
Posted

How common is neuropathy -ie muscle twitching all over, stinging/stabbing pains (electricul feeling)

For me it was very common.Took heavymetal testing and research to realize I collected arsenic from our well and eating rice. Use only purified water and limit rice consumption to a minimum.Full recovery still can build levels up if careless. When levels get high loose articulation of fingers, ability to walk, severe pain. Ungodly levels of pain "suicide watch". Unable to use hands for anything.

Wolicki Enthusiast
Wolicki
Posted

I developed pretty bad neuropathy AFTER going gluten free. Started in the sides of my feet and eventually moved all the way up to my face.

Thankfully, it all went away within about 7 months. I still get an occassional tinge of tinglies, but nothing like before.

MoniDew Newbie
MoniDew
Posted

it is very common if you do not take a sublingual vitamin b12 in the form of METHYLcobolamine. Celiacs are often extremely nutrient deficient, and vitamin 12 is a common deficiency among them. Celiacs often do not take the correct FORM of nutrients, either. The METHYL form is best absorbed and utilized by celiacs.

k2626 Explorer
k2626
Posted
  • Author

The odd thing for me my B 12 is on the HIGH side (I slam down supplements). Is the neuropathy with celiac only due to b 12? These stinging pains hurt, its like a bee sting jumping around my small joints!

Kathy59 Rookie
Kathy59
Posted

The odd thing for me my B 12 is on the HIGH side (I slam down supplements). Is the neuropathy with celiac only due to b 12? These stinging pains hurt, its like a bee sting jumping around my small joints!

I ended up being Dx with Celiac because of the neuropathic pain; the pain was excruciating;my neurologist had extensive bloodwork ordered and it was found basically all viruses I had ever been exposed to were active in my body. It has been explained to me that my body was busy trying to attack the glueten and the other viruses were able to become active making their way to my nerves causing nerve damage..I also had a B12 and Vit D deficiency. I currently take Lyrica, Baclofen, and Cymbalta to keep the nerve pain tolerable. It is just going to take awhile to manage. However, I am much better. It might be what is going on with you. My empathy extended to you!!!

YoloGx Rookie
YoloGx
Posted

I have had similar nerve problems which can still recur, particularly after I have been glutened.

I discovered a while back that I am B-1 deficient, which causes Beri Beri like symptoms. Certain Nordic families in particular have this trait--though my friend who is English and Welsh also seems to suffer from some similar symptoms.

In any case I have discovered that by taking co-enzyme B vitamins from country life on an empty stomach (I take two at once) it got rid of many of my beri beri like symptoms. It even made my heart stop racing as well as helped stop the aching, jerking, tingling and buzzing neuropathy problems in my feet, calves and forearms as well as occasionally around my lips.

I still continued to have some leg problems too however in part due to old injuries as well as poor mineral absorption. I now take liquid silica drops as well as MSM in addition to the more usual minerals (zinc, magnesium citrate, calcium), including trace sea minerals.

I seem to need to take very absorpable calcium. I thus take E-zorb. Nothing else seems to work as well, not even the calicium citrate. I think the Bone Up would be good too--one just has to take an awful lot of it at a time for it to do any good.

The addition of the silica and msm has made a huge difference for me, so I thought I would pass it on. I now can do push ups without worry of injuring my joints as I used to up until the end of December--after which I started taking the silca and msm. Now I can actually sleep at night for the most part--though I still need to exercise and do some meditation earlier on.

I also eat a lot of home made yogurt that I ferment for 24 hours. This removes the lactose while preserving the calcium (--though for someone who is allergic to casein it would still not work). The 24 hour yogurt creates a much better source for acidophilous etc. It is easy to make and at least half as expensive as regular yogurt. I was reading that casein is a great food source for creating energy for the mitochondria and a variety of neurotransmitters as well as co-Q 10--so thus the yogurt is perfect for me since otherwise I am allergic to all milk and all cheeses.

In addition eating a lot of fresh vegetables seems to be vital, as well as going on regular walks or doing some other similar exercise. Further saunas and/or detox teas taken fairly regularly are a good idea.

Make sure that with all this that you add in some good oils. I actually need to have animal fats as well as the Omega 3's, 9's and 6's. The nerve sheath after all is composed of oil and fat. Thus I am not a vegetarian. Similarly my body seems to crave meat. Without it I can get very spacey, even though I don't need to eat a lot, its good to have some meat at least by mid day and then for my evening meal.

Good luck!

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  • 5 months later...
suen Newbie
suen
Posted

I developed pretty bad neuropathy AFTER going gluten free. Started in the sides of my feet and eventually moved all the way up to my face.

Thankfully, it all went away within about 7 months. I still get an occassional tinge of tinglies, but nothing like before.

Thank you for this posting. I suspected that I might have celiacs and couldn't get in to see a doctor for several months, so I went ahead and tried the diet. Foot pain that had bothered me for two years improved within 5 days. However, 3 weeks into the diet, I accidentally ingested wheat and had an anaphylactic reaction...couldn't breathe and swollen throat. So sad. Now I can't go back on for official testing.

After accidentally ingesting trace amounts during the 4th week, I experienced strange brain symptoms - electric jolts in my brain as I fell asleep and brain pressure followed by brain wave type things and my spinal chord felt like it was on FIRE. Also, serious tingling in my limbs, falling alseep of my limbs, muscle weakness, loss of feeling in my fingers. I have had to start taking B complex vitamins twice a day and I just added acetyl-l-carnitine (3GM/day). It seems to help, but I find if I ingest just a tiny bit that it takes me four days to get through it. This last time I ate three Starbursts. I have started to wonder if I have MS.

I don't dare eat anything that I haven't prepared myself. When I explained all of this to my doctor, he looked at me like it was all news to him.

I am HAPPY to hear that you have had some relief from the neurological issues. I pray that mine will improve over time.

mommyto3 Contributor
mommyto3
Posted

I have crazy neuro symptoms just like yours that come and go. And sometimes I swear that I haven't eaten any gluten. It actually seems to have gotten worse since going gluten free but I'm thinking my gluten sensitivity has just skyrocketed so now it only takes a tiny bit to get my nervous system going. It really drives me nuts! I'm actually at the end of a flare up right now and I think it was an accidental glutening on Thursday. I had to do a presentation and decided to try to be like everyone else and eat the luncheon food (staying away from obvious gluten). But of course, I know gluten was in there somewhere and sure enough, Friday morning the twitching and stinging and burning and jerking starts. Funny thing is that I totally forgot about eating the buffet food and thought it was because I had caffeine Friday morning. Duh.

I've had this neuro stuff for 10 years and only now am I coming to think it's the gluten. It's still hard to wrap my head around it. I'm sure I'm deficient in Magnesium and B vitamins but still trying to figure out how to supplement correctly. All I know is that liquid Magnesium really seems to help.

This neuro stuff is enough to drive you mad. I've been worried about MS, ALS, Lyme Disease and just freaking being out of my mind! I sure hope it actually is the gluten because I can control that...........

Good Luck

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    • knitty kitty
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