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What Is Causing The Numbness


holdthegluten

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holdthegluten Rising Star

I have been having numbness and weakness in my legs,feet,arms,and hands. What is causing this tingly feeling? Its kind of scary. Any info. I dont have any nutritional deficincies. My tests all looked good. I got glutened about a week ago.


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wowzer Community Regular

It could be from getting glutened. That went a way for me when I went gluten free. I will get the tingling if I get glutened. I hope it goes away for you soon. Wendy

Betty in Texas Newbie

I know how you feel I was having this for about a year and finally figured it out. I started taking 500 mg of B12 letting it melt in my mouth. About a month it has all gone a way. It was bad it would wake me up in the middle of the night and I would be shaking my hand trying to get the feeling back in it my husband thought maybe I was loosing it but he under stands . He is just so happy I finnaly found out what was causing it . I am 55 and found out I celiac 3 years ago lot of suffering. Hope this helps I dont go to a lot of Drs. I try to figur it out on my own since I don't have insurance any more since it went to a $ 1,000 a month could't afford that. But I will be fine and I hope you start felling better.

ravenwoodglass Mentor
I have been having numbness and weakness in my legs,feet,arms,and hands. What is causing this tingly feeling? Its kind of scary. Any info. I dont have any nutritional deficincies. My tests all looked good. I got glutened about a week ago.

This is a result of your glutening. The suggestion to start taking sublingual B12 is a good one. It should help. If your B12 levels are down, and different folks feel this lack at different levels, mine was still over 200 but I was having severe symptoms at diagnosis. My doc considered this an OK level but by looking through my old labs I discovered that it had been dropping from about 500 steadily over a couple years.

Also if your celiac presentation has neuro features often these will show up full force when glutened. These neuro features can mimic symptoms for disease like MS, in fact many of us go through a lot of tests for MS and some are misdiagnosed with it from the symptoms alone. It will resolve once the neurotoxin is out of your system.

Hopefully this will pass for you quickly. Try to eat as much whole unproccessed food as you can for a bit while you heal that will help. Feel better soon.

darlindeb25 Collaborator

When doing bloodwork, you must ask for a B12 count or they don't even check it. Then, if the doctor tells you it is in the normal range, then you probably need more. The normal range is much lower than your B12 should actually be. You can't really get too much B12, your body eliminates what you do not need daily. I take 2400mcg daily, the recommended daily 100% value of B12 is 6mcg, which is nothing. I take 40,000% of the daily recommended value. I do have neuropathy and I honestly think the additional B12 has slowed the progression.

Once you have a B12 deficiency, you will always need to take additional B12. I started out at 1200mcg and my B12 level at testing was 1237 with the ranghe being 200-1100. No one told me you must stop taking your B12 several days before testing to get a true level.

If the numbness and weakness continues, ask your doctor to order a nerve conduction test, or a doppler for neuropathy. It's fairly painless, just some little shocks.

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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. 
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      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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