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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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    • Theresa2407
      Is this celiac?

      By Theresa2407 · Posted

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I use Calm because my body doesn’t absorb Magnesium and I only need to take once in evening.                                                    No dairy of any kind (milk, cheese, yogurt, No breads, No past,  No oats, No pizza, No gluten-free beer, No snacks like cake, biscuits, pies, donuts.                                                                                                Many dietitians will tell you to follow a gluten free diet but you have to heal first. Don’t misunderstand me, dietitians are our friends and help us.                                                                                              10% of people with gluten-free will be intolerant to dairy                                                                                  10% can not tolerate oats                                                                                                                     After the six weeks, you can start to add these foods back into your diet. 1 new food every 4 days; this way you know if you react to this food.                                                                                                  Oats shouldn’t be tried for 1 year after being diagnosed; then start with 1/3 of a cup. Only gluten-free Oats are acceptable.                                                                                                                                              You should have results within 3 days of following a correct healing diet. Bloating should be leaving, migraines should be gone. Might take bowels a little longer to respond. If you start with 5 times a day on the Citrucel and cut back as your bowels return to normal; then use 1 Tbsp. daily. 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I talk to many newly diagnosed people who start the gluten-free diet with pasta, breads, snacks, and pizza. After a month or so, they do not know why they don’t feel any better and still are sick with their original symptoms: They worry the diet is not working for them. For some there may be other factors involved, but most just aren’t letting their body heal properly. I blame the internet, and misinformation it contains. People want a quick fix, not realizing this is a life long disease. They need a good support group, with people who have been through this and knows what works! This is what I have found will work for you. 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Oats shouldn’t be tried for 1 year after being diagnosed; then start with 1/3 of a cup. Only gluten-free Oats are acceptable. You should have results within 3 days of following a correct healing diet. Bloating should be leaving, migraines should be gone. Might take bowels a little longer to respond. If you start with 5 times a day on the Citrucel and cut back as your bowels return to normal; then use 1 Tbsp. daily. This works if you have constipation or diarrhea. Meanwhile make sure you have had a Dexa test (bone density) and a blood test to check your vitamin and mineral levels: Zinc, D,K,B,C and iron levels. Don't take supplements while healing as your body is not accepting them and they will flush through your body. Have you had a breath test for Dairy, Fructose, and bacteria overgrowth? Should have done when first diagnosed. Remember to have a tTg IgA blood test repeated at 6 months then every year after, with another scope done in 3 years. Only way to know if you are healed. 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    • Wheatwacked
      Is this celiac?

      By Wheatwacked · Posted

      Marsh 3b is the Gold Standard of diagnosis for Celiac Disease.  Until recently, regardless of antibody tests, positive or negative, you had to have Marsh 3 damage to be awarded the diagnosis of Celiac. As I understand you,  you were having constant symptoms..  Your symptoms improved on GFD, with occassional flare ups. Did your doctor say you do and you are questioning the diagnosis? Regarding your increasing severity when you get glutened it is "normal".  Gluten acts on the Opiod receptors to numb your body.  Some report withdrawal symptoms on GFD.  I was an alcoholic for 30 years, about 1/2 pint of voda a day. Each time I identified a trigger and dealt with it, a new trigger would pop up.  Even a 30 day rehab stint, with a low fat diet (severe pancreatis) during which I rarely had cravings.  Stopped at a Wendys on the way home and the next day I was drinking again.  20 years later, sick as a dog, bedridden on Thanksgiving, after months of reasearch, I realized that gluten free was my Hail Mary.  Back in 1976 my son was diagnosed at weaning by biopsy with Celiac Disease and his doctor suggested my wife and I should also be gluten free because it is genetic.  At 25 years old I felt no gastro problems and promised if I ever did I would try gluten free.  Well, I forgot that promise until I was 63 and my wife 10 years dead.  Three days of gluten and alcohol free, I could no longer tolerate alcohol. Eleven years gluten and alcohol free, with no regrets. Improvement was quick, but always two steps forward and one back.  Over time I found nineteen symptoms that I had been living with for my entire life, that doctors had said, "We don't know why, but that is normal for some people". Celiac Disease causes multiple vitamin and mineral deficiency.  It is an autoimmune disease, meaning your immune system B and T cells create antibodies against ttg(2) in the small intestine in Celiac Disease, and sometimes ttg(3) in skin in Dermatitis Herpetiformus.  'Why' is poorly understood.  In fact, it wasn't even known that wheat, barley and rye gluten was the cause.  Celiac Disease was also called Infantilism, because it was deadly, and believed to only be a childhood disease. So, as part of your recovery you must deal with those deficiencies.  Especially vitamin D because it contols your immune system.  Virtually all newly diagnosed Celiacs have vitamin D deficiency.  There are about 30 vitamin and minerals that are absorbed in the small intestine.  With Marsh 3 damage you may be eating the amount everyone else does, but you are not absorbing them into your system, so you will display symptoms of their deficiency.   As time passes and you replenish your deficiencies you may notice other symptoms improve, some you did not even know were symptoms. Our western diet has many deficiencies built into it.   That is the reason foods with gluten are fortified.  Gluten free processed food are not required to fortify.  Vitamin D, Iodine, choline.  The B vitamins, especially Thiamine (B1) run deficient quickly.  We only store enough thiamine for 2 weeks so the symptoms of Gastrointestinal BeriBeri can come and go quickly.  Magnesium, zinc, etc. each having its own symptoms affecting multiple systems.  High homocystene, an indicator of vascular inflamation can be cause by deficient Choline, folate, B6 and or B12.  Brain fog symptoms by deficient choline, iodine, thiamine B1. Dietary intake of choline and phosphatidylcholine and risk of type 2 diabetes in men: The Kuopio Ischaemic Heart Disease Risk Factor Study  
    • Rogol72
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      I cut out the rice because it was affecting my stomach at the time ... not necessarily dermatitis herpetiformis. It was Tilda Basmati Rice, sometimes wholegrain rice. I was willing to do whatever it took to heal. Too much fiber also disagrees with me as I have UC.
    • trents
      Is this celiac?

      By trents · Posted

      But you didn't answer my question. When you consume gluten, is there an identifiable reaction within a short period of time, say a few hours?
    • Scott Adams
      Is this celiac?

      By Scott Adams · Posted

      You can still have celiac disease with negative blood test results, although it's not very common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/   
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