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

Anyone Here With Nerve Pain/damage


AVR1962

Recommended Posts

AVR1962 Collaborator

For those who have had the tests and come up empty handed, docs not knowing why you have nerve damage, I need some advise. I have been on a gluten-free diet for 1 1/2 years and have improved greatly but my nerves have not. Have any of you done something, taken something that worked?? Please share, I am open ears.

I went to doc today because I yet a new nerve pain....this time on the side of my first finger on left hand. This comes after just seeing the doc in June for lump between my first and second fingers on right hand that he says is bundles nerves.

The numbness in my legs has improved. It used to be everything below the knee, now it is ankle down but I am also taking quite alot of B12. The pins and needles pain in between my toes is managable with 500 mg of L-Carnitine a day.....without it it is painful.

I have had an MRI on my back....2 bulging discs were found. I had a few treatments, did physical thereapy and the sciatic pain went away.

To this day I am having trouble with spasms in my legs. Doc has tried to put me on 2 different meds but they made me sick. As long as I keep my magnesium intake high I do much better but I don't seem to be improving.

Doc told me today he could send me to nuerology and they could stick a needle in my finger and try to figure the extend of nerve damage but he said every test that could be done to find the source has been done. I told me that he has no idea why I am having the issues with nrves and all he can do is try and aleviate the symptoms. So I need advise.


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



Celiac.com Sponsor (A8-M):



flowerqueen Community Regular

For those who have had the tests and come up empty handed, docs not knowing why you have nerve damage, I need some advise. I have been on a gluten-free diet for 1 1/2 years and have improved greatly but my nerves have not. Have any of you done something, taken something that worked?? Please share, I am open ears.

I went to doc today because I yet a new nerve pain....this time on the side of my first finger on left hand. This comes after just seeing the doc in June for lump between my first and second fingers on right hand that he says is bundles nerves.

The numbness in my legs has improved. It used to be everything below the knee, now it is ankle down but I am also taking quite alot of B12. The pins and needles pain in between my toes is managable with 500 mg of L-Carnitine a day.....without it it is painful.

I have had an MRI on my back....2 bulging discs were found. I had a few treatments, did physical thereapy and the sciatic pain went away.

To this day I am having trouble with spasms in my legs. Doc has tried to put me on 2 different meds but they made me sick. As long as I keep my magnesium intake high I do much better but I don't seem to be improving.

Doc told me today he could send me to nuerology and they could stick a needle in my finger and try to figure the extend of nerve damage but he said every test that could be done to find the source has been done. I told me that he has no idea why I am having the issues with nrves and all he can do is try and aleviate the symptoms. So I need advise.

Hi! I have nerve damage in various parts of my body, but not sure whether it's relative to my Coeliacs though. My spine damage isn't (severe sciatica because of degeneration in spine) but I have it in a leg (for 30 years) and my arm for about 20 years. I've only been diagnosed as coeliac 11 months.

pricklypear1971 Community Regular

I'm sorry you're still having problems.

I have had some odd stuff going on with my hands - shaking of fingers, a pain radiating down from my arm to my thumb. My thumb woukd actually twitch if i strained it, or prriodically for no apparent reason. I've always assumed carpal tunnel (the pain) and assumed gluten for the fingers. All of it was worse if I got glutened.

I asked a massage therapist about it once and she advised icing it, if it improved it was inflammation. So I did, and it improved. She said sometimes nerves get tangled in the muscles.

So, fast forward to a few months ago, when i started working out. I feared holding weights, etc. would be a problem because if this. And it was for the first three weeks or so. Then something weird happened - it stopped. The hand shaking stopped, the thumb twitching stopped, hard to tell if the arm pain stopped because I was so sore in general :). But the arm pain is gone now. The only weirdness I notice, and I'm not sure if its really there, is a hypersensitivity where my fingers meet my hand on my palm, on that hand.

So, working out with weights 10 - 20 lbs max, seems to have solved the problem??? I don't know what the cause of it was, I'll assume a tweak somehow exacerbated by gluten inflammation and inflammation in general.

nvsmom Community Regular

I had a burst disc in my lower back a few years ago. As a result, I have some paralysis (drop foot) down my right leg and into my foot. I occassionally get muscle cramps in my shin at night, but I found the homeopathic remedy, Cuprum Metallicum really helped relieve my muscle cramps.

Before my disc burst, I used to get back spasms and sciatic pain quite often beginning in my early 20's. I'm not sure if my lower back pain is Celiac or AI related. My dad had degenerating discs, so did his mother, so I always assumed it was genetic.... but AI are genetic too aren't they? Hmm.

Hope you feel better soon.

AVR1962 Collaborator

Thank you for the replies. My physical therapist mentioned that my connective tissues were abnormally tight and she suggested stretching which I have done. Doc suggested yoga and I think it is worth a try. I will look up the cuprum metallicum, as I need some relief. I didn't realize you could have sciatica in the arm.....I really hope that is not my issue. Having it in my leg was bad enough, I cannot imagine it in my arm. I take comfort being with those have dealt with the pain, and I thank you for your replies.

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. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      2

      Related issues

    2. - MogwaiStripe replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?

    3. - knitty kitty replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      16

      Gluten Issues and Vitamin D

    4. - knitty kitty replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,246
    • Most Online (within 30 mins)
      7,748

    IRENEG6
    Newest Member
    IRENEG6
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Mari
      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years  ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate this low tTG and still have celiac disease. Normal tTG can happen when a person had been reacting for many years. Another way is that the person has not been eating enough gluten to raise the antibody level. Another reason is that the tTG does not show up on a blood but may show up on a fecal test. Almost all Celiacs inherit at least one of the 2 main Celiac genes. I had genetic tests for the Celiac genes at Enterolab.com. I inherited one main Celiac gene from one parent and the report said that the DQ gene I inherited from my other parent, DQ6, could cause a person to have more problems or symptoms with that combination. One of my grandmother's had fairly typical symptoms of Celiacs but the other grandmother had severe food intolerances. I seem to show some problems inherited from both grandmothers. Human physiology is very complex and researchers are just beginning to understand how different body systems interact.  If you have taken an autosomal DNA test you can download your raw data file and upload it to Prometheuw.com for a small fee and search for Celiac Disease. If you don't find any Cekiac genes or information about Celiac disease  you may not have autoimmune gluten intolerance because more than 99% of Celiacs have one or both of these genes.  PLEASE ASK QUESTIONS IF YOU WANT TO KNOW EHAT i HAVE DONE TO HELP WITH SYMPTOMS.  
    • MogwaiStripe
      I can't prove it, but I truly believe I have been glutened by airborne particles. I used to take care of shelter cats once per week at a pet store, and no matter how careful I was, I would get glutened each time even if I wore a mask and gloves and washed up well after I was done. I believe the problem was that because I'm short, I couldn't do the the tasks without getting my head and shoulders inside their cages, and so the particles from their food would be all over my hair and top of my shirt. Then I had to drive home, so even if I didn't get glutened right then, the particles would be in my car just waiting for me to get in the car so they could get blown into my face again. I gave up that volunteer gig and stopped getting glutened so often and at such regular intervals.
    • knitty kitty
      Hello, @MogwaiStripe, Vitamin D is turned into its activated forms by Thiamine.  Thiamine deficiency can affect Vitamin D activation. https://pubmed.ncbi.nlm.nih.gov/14913223/ Thiamine deficiency affects HLA genes.  HLA genes code for autoimmune diseases like Celiac, Thyroiditis, Diabetes, etc.  Thiamine deficiency inside a cell triggers a toggle switch on the gene which in turn activates autoimmune diseases carried on the gene.  The reference to the study is in my blog somewhere.  Click on my name to go to my page, scroll down to the drop down menu "Activities" and click on blogs.  
    • knitty kitty
      Hello, @annamarie6655, Yes, there's many of us who react to airborne gluten!   Yes, animal feed, whether for chickens or cats or dogs, can release airborne gluten.  I can get glutened from the bakery section at the grocery store.   The nose and mouth drain into the digestive system and can trigger systemic reactions.   I find the histamine release in response to airborne gluten will stuff up my sinuses and bother my eyes.  High histamine levels do cause anxiety and migraines.  The muscle spasms can be caused by high histamine, too.  The digestive system may not manifest symptoms without a higher level of gluten exposure.   Our bodies make an enzyme, DAO (diamine oxidase), to break down histamine.   Pyridoxine B 6, Cobalamine B12, Vitamin C, copper, zinc, and iron are needed to make DAO.  DAO supplements are available over the counter.  Taking a B Complex supplement and additional Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) helps reduce the amount of histamine being released.  Mast cells without sufficient Thiamine have an itchy trigger finger and release histamine at the slightest provocation.  Thiamine helps mast cells refrain from releasing their histamine.    I find taking additional TTFD thiamine helps immensely with neurological symptoms as TTFD can easily cross the blood brain barrier without a carrier.  High histamine in the brain can cause the muscle spasms, anxiety and migraines.  Vitamin C really helps with clearing histamine, too.   The Digiorno pizza mystery reaction could have been caused by a reaction to the cheese.  Some people develop lactose intolerance.  Others react to Casein, the protein in dairy, the same as if to gluten because Casein resembles the molecular structure of gluten.  An enzyme used in some dairy products, microbial transglutaminase, causes a gluten reaction because it is the same as the tissue transglutaminase our bodies make except microbes make it.  Those tTg IgA blood tests to diagnose celiac disease measure tissue transglutaminase our bodies release as part of the autoimmune response to gluten.   You're doing great!  A Sherlock Holmes award to you for figuring out the connection between airborne gluten and animal feed!!!  
    • Scott Adams
      This article may be helpful:  
×
×
  • 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.