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Neuropathy


k2626

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k2626 Explorer

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


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naturally gluten free Newbie

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

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

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

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

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

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

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

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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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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