Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Peripherial Neuropathy


Jill0711

Recommended Posts

Jill0711 Rookie

I know that peripherial neuropathy can be related to Celiac; however, in my case, the numbness and tingling didn't start until after I was gluten-free. I have no history of having it except about two years ago I had it as a side effect of a medication. My next thought was vitamin or nutrient difficiency. I thought it was B-12 related so I started eating eggs everyday and it seemed to help. Now it is back. I did have a lot of vitamins and minerals tested, but am waiting on the results. By the way, I didn't start eating the eggs until after I had the blood drawn.

Anyone have peripherial neuropathy as a result of the gluten-free diet? Any advice on how to make it better?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



cahill Collaborator

I know that peripherial neuropathy can be related to Celiac; however, in my case, the numbness and tingling didn't start until after I was gluten-free. I have no history of having it except about two years ago I had it as a side effect of a medication. My next thought was vitamin or nutrient difficiency. I thought it was B-12 related so I started eating eggs everyday and it seemed to help. Now it is back. I did have a lot of vitamins and minerals tested, but am waiting on the results. By the way, I didn't start eating the eggs until after I had the blood drawn.

Anyone have peripherial neuropathy as a result of the gluten-free diet? Any advice on how to make it better?

do you have any blood sugar issues ??

the B vitamin deficiencies and blood sugar issues are the first two things I am considering as possible reasons this is occurring for me. I didnt notice it until after being gluten free, but to be honest I was so ill before going gluten free I might not have singled it out from everything else going on.

rosetapper23 Explorer

I recently read an article that said that iron anemia can also cause peripheral neuropathy because of lack of oxygen to the cells. Could that be a possibility?

I've had peripheral neuropathy since I was 15 from celiac and it worsened during chemo when I was 50, but it's a lot better now--still there, but better.

IrishHeart Veteran

Anemia---iron deficiency, B-12 deficiency or Folate (B9) deficiency--can all cause neuropathy. Since it is quite common amongst us, it is wise to have all those checked. All are remedied by certain foods and/or supplementation if necessary.

Hope you find the reason!!

It's maddening , isn't it?? I burn and tingle and go numb everywhere---like crazy.

I am hoping that it resolves as I have just begun supps. for the folate deficiency I just discovered after I requested the testing. I knew my B-12 was fine, glucose normal and thyroid perfect...then, I read about folate levels in celiac.....go figure. It was B9!!

We have to be detectives..... :blink:

  • 7 months later...
twe0708 Community Regular

So from what I have read so far, you need to make sure your iron, b12 and folate levels are where they should be. Does anyone know if ther are certain foods or drinks we should avoid if you have this? In the last two months I have experienced a burning feeling on my calf. as if i scrapped my skin or have a sunburn No other symptoms and it goes away within 24 to 48 hours. I was experiencing a few months ago that my legs would feel like they were going to give out if I was on them too long, which was weird bc I hadn't felt like I had been on them that long but now I know. I also experience a slight tingling/ numb feeling when I rub lotion on my ankle and top of my feet in the morning, but other than that I don't feel it unless putting on lotion or rubbing my hand over the area. Is it necessary to see a doctor or do we just need to lead a healthy life? I'm tired of doctors!

  • 2 weeks later...
Jamie15 Newbie

I was diagnosed with small fiber neuropathy they believe was caused by the gluten and vitamin deficiencies I had. Going gluten free and taking D helped quite a bit and gave me a lot of my mobility back. I also take monthly B12 injections to help with the tingling. After still having some pain(burning, tingling), I decided to look into other food intolerances and took a test. Cutting out several other foods I reacted to helped enough for me to get off my pain medicine I was taking daily. I do still communicate with the doctor that diagnosed me but she is across the country so I do not see her. I am hoping my neuropathy was caught early enough for a possible reversal once I get my diet right. I know how frustrating the neuropathy is and hope you find some relief soon.

AVR1962 Collaborator

I know that peripherial neuropathy can be related to Celiac; however, in my case, the numbness and tingling didn't start until after I was gluten-free. I have no history of having it except about two years ago I had it as a side effect of a medication. My next thought was vitamin or nutrient difficiency. I thought it was B-12 related so I started eating eggs everyday and it seemed to help. Now it is back. I did have a lot of vitamins and minerals tested, but am waiting on the results. By the way, I didn't start eating the eggs until after I had the blood drawn.

Anyone have peripherial neuropathy as a result of the gluten-free diet? Any advice on how to make it better?

Numbness and tingling in the hands and feet? Are these the only neuro issues you are having? Any burning or pins and needles poking feeling?

I'll attempt to answer this from my experiences. I was having a pins and needles poking feeling between my toes, between my fingers and in my eyes off and on for 2 years before my symptoms came to a head. I went to the eye doc, I mentioned this to my doc, no one had an answer. It wasn't all the time, just occasionally.

When I finally got real sick the pain in my feet was bad, at this point I was still on gluten. My feet were burning, I was having tingling and numbing, the pins and needles poking in my feet were constant. I have been off gluten now for 7 months and while the ataxia did go away, I can only keep all the other symptoms away by supplementing with a fair amount of B complex and L-carnitine.

The ataxia I related directly to the glutens. I think though the neuro issues are related to a deficiency. My labs showed very low marks before I started supplements, and doc wants me to keep doing what I am doing as it does work.

What I have questioned though, and maybe this will help you too, is am I having this because my system became so wrecked that my body was no longer absorbing nutrients OR have the nerves been damaged from something else. I honestly felt I was going to be diagnosed with MS, read about how an MRI can show stroke or MS by the location of lesions on the brain. Patients with MS and diabetes have many of the same symptoms due to nerve damage as well but I am assuming their issues are not due to a deficiency. The complex I take is recommended for people with problems with MS and diabetes. I have been tested for diabetes and nothing in my MRI to be concerned about.

I have had plenty of questions myself. I odered a book about neuropathy and another book on diet for nueropathy and I am hoping to learn more.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Lori2 Contributor

I have had plenty of questions myself. I odered a book about neuropathy and another book on diet for nueropathy and I am hoping to learn more.

Please keep us posted on what you learn. I'm just on the verge of asking for something to help with the burning at night. Still hoping that the nerve damage will heal and wondering what I can do to speed it along.

AVR1962 Collaborator

Please keep us posted on what you learn. I'm just on the verge of asking for something to help with the burning at night. Still hoping that the nerve damage will heal and wondering what I can do to speed it along.

Will do!

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

    2. - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

    3. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    4. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    5. - marion wheaton posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,407
    • Most Online (within 30 mins)
      7,748

    H2HPizzaWagon
    Newest Member
    H2HPizzaWagon
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • 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 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.