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Neuropathy In My Feet Scares Me!


Kimbalou

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Kimbalou Enthusiast

I noticed I had neuropathy in my feet before my Celiac diagnosis. Yesterday it was really bad. I had tingling and sharp shooting pains in my toes. I read online that anti-depressants can help with the pain. I had no idea. What do you do for neuropathy? I am going to see my dr. soon about this. I don't like how it feels...and it makes me feel OLD. I also have varicose veins...I've had some of them stripped many years ago. My circulation sucks. I wear support hose at work...fun times. ugh.


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cassP Contributor

I noticed I had neuropathy in my feet before my Celiac diagnosis. Yesterday it was really bad. I had tingling and sharp shooting pains in my toes. I read online that anti-depressants can help with the pain. I had no idea. What do you do for neuropathy? I am going to see my dr. soon about this. I don't like how it feels...and it makes me feel OLD. I also have varicose veins...I've had some of them stripped many years ago. My circulation sucks. I wear support hose at work...fun times. ugh.

#1 on your list should be to get your B12 levels checked. a B12 deficiency leads to peripheal neuropathy. and you dont have to be below range- my sis in law was only in the 200s and was suffering from this. Always make sure you get a copy of your results so you can learn about the ranges and your results- many times doctors miss something. good luck

Skylark Collaborator

You also need a super-careful diet. Folks with neuro problems are more sensitive to gluten than most.

Takala Enthusiast

Q. what do you do for neuropathy?

A. eat a gluten free diet.

I have the feeling back in my feet now after years of numbness. The only bad news is that my feet are not exactly the feet one would want to have anyway :lol: and now I can feel them.

YoloGx Rookie

You also need a super-careful diet. Folks with neuro problems are more sensitive to gluten than most.

Unfortunately what Skylark suggests seems to be true--certainly it is the case for me. I am a true "canary".

I tend to be low on B-1, not B-12. But taking a B complex is good in either case since it helps keep a better balance--B vitamins are essential for a heathy nervous system. And unfortunately having celiac or severe gluten intolerance makes absorbing B vitamins often difficult (as well as calcium and other minerals by the way).

I have found taking co-enzyme B vitamins helps me absorb the vitamins more effectively than otherwise. I take country life capsules since I can't handle the sublingual vitamins with their sorbitol and flavoring. I had taken B vitamins for years, but they just didn't do the same job that the co-enzyme variety does.

I have recently discovered that I am salicylic acid sensitive; this sensitivity has given the nerve problems in the feet and legs an extra special special twist--like it was driving me nuts trying to sleep at night and twitching and jerking all night long almost every night until someone here pointed out I might also have salicylic acid sensitivity. Salicylic acid is not only in aspirin; it is in all kinds of fruits and vegetables as well as herbs. I now eat a low salicylic acid (SA) diet, which has greatly reduced the nerve problem in my legs and feet I have especially at night--along with significantly reducing the swelling scabby itchy eczema in my ears and nethers.

I also find it helps to do yoga and go for long walks almost daily. Nevertheless, I still often have to take benedryl to help me sleep at night. It works safely without the side effects of an antidepressant.

I might be worse than some with this problem due to the fact that in 2006 (before I was completely 100 % gluten free) the myelin sheath on my nerves was down by 50%. I started a complete gluten-free experience and diet in November of 2007, and feel I have improved significantly since. The co-enzyme B vitamins by themselves however had already calmed down my nervous, rattling heart that tended to race in the middle of the night or whenever I exerted myself. It also greatly reduced unexplained anxiety I was experiencing from time to time. Going completely gluten-free fortunately got rid of the anxiety. Itonly seems to come back when I have been glutened (along with the migraines, intestinal distress etc.).

Another thing that helps is to take a hot bath with epsom salts in it, or alternatively, baking soda--it is very relaxing and excellent for the nerves.

I also brush my teeth with baking soda. Baking soda actually is an antidote for salicylic acid poisoning and thus is very balancing for someone with SA.

Baking soda is also helpful against radiation poisoning we are all experiencing from the Fukishima disaster--since it helps us get rid of the cesium that is in a lot of our vegetables right now. I think the fact my family lived so close to the Hanford Nuclear plant up in Washington when they did the Green Run experimental release of radioactive materials into the atmosphere did not help my nerves any, or my tolerance to gluten. I have learned a few things since then, however, that makes life a lot easier. I hope this post is helpful to you and that you soon get to the bottom of your neuropathic problems and start to feel better soon.

Bea

Juliebove Rising Star

I do take extra vitamin B12. My levels don't show as low but my Endo. wants me on more. Another Endo. told me to take Evening Primrose Oil, 2,000 mg each morning and night. That really seems to help. Some people find that Alpha Lipoic Acid helps. I take that too. Not sure if it helps.

I tried the antidepressants. They give you a really low dose. They did not help me at all. Just gave me all kinds of side effects. Lyrical is supposed to help too, but the people I know that takes it says it makes them high. This is not how I want to feel. And you are not supposed to drive or operate machinery when you take it. I wouldn't try it.

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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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