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

Peripheral Neuropathy And B12


Laurenlovespink

Recommended Posts

Laurenlovespink Newbie

Hi,

I am not diagnosed yet. Presently going through a bunch of tests to figure me out. I just went back to the doctor yesterday to look into what else could be causing my peripheral neuropathy besides celiac disease(even though I have all of the classic celiac symptoms). My new doctor just did a full celiac panel. which my first one did not do the first time, so I am waiting for my results. My new doctor wants to do an MRI to test for MS because of the peripheral neuropathy.

Anyway to my question, What have some of your B12 levels been when experiencing peripheral neuropathy?? When my B12 was tested 2 months ago it was 373 which is "normal". I am just wondering if anyone has had a level in the 200-500 range and still experienced the neuropathy. Did it get better with B12 injections or sublingual B12?

Thank you!


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



Celiac.com Sponsor (A8-M):



rinne Apprentice

My B12 levels were 228 and yes the B shots and the methylcobalmin B12 helped.

My thinking is that it is worth supplementing before having tests such as an MRI. I am of the opinion that testing procedures themselves may stress the body and that once we are ill we don't need more stress especially if by supplementation we can see positive changes.

And hello :) and welcome.

rinne Apprentice

Open Original Shared Link

MRI IN THE NEWS

JUL-17-08: After two years of legal wrangling between a victim of gadolinium contrast dyes used in an MRI procedure and her insurer, the court has order that the woman receive treatment. [NEWS INFERNO: MRI HEALTH RISKS] JUN-25-08: Two patients who had MRIs at the Mayo Clinic last year have been diagnosed with Nephrogenic Systemic Fibrosis, a disease linked to a metal-based contrasting agent used in MRIs. [NEWS: MRI KIDNEY FAILURE] MAY-23-08: Patients with weak kidneys put themselves at risk if they undergo an MRI scan that uses gadolinium dye as a contrast agent. [uS RECALL NEWS: MRI GADOLINIUM]

MAY-30-07: The mother of a man who died after receiving injections of Magnevist for an MRI while he had end-stage kidney disease has filed a lawsuit against Bayer Healthcare. The lawsuit claims that Bayer knew about the risk of NSF but did not properly warn the public. [FORBES: MRI KIDNEY] MAY-27-07: A woman who suffered from chronic kidney disease for 15 years has been immobilized by a dye that was injected into her veins for an MRI test in 2002. She developed NFD/NSF, a disease that creates thick scar tissue that can paralyze internal organs. [COURIER-POST: MRI KIDNEY FAILURE] MAY-24-07: The FDA is asking manufacturers of certain contrast agents used for MRI scans to put a black box warning on the packaging. The warning would state that patients with severe kidney insufficiency are at risk for developing a potentially fatal disease. [MARKETWATCH: MRI

MaryJones2 Enthusiast

When I started several years ago mine was around 350 and considered 'normal' by the lab standards but I certainly felt off. Two of my doctors like to see it about 500. I feel much better when it higher that's for sure. I've been doing weekly injections for several years now and love them. It's one less pill I have to worry about each day!

'

ravenwoodglass Mentor
Hi,

I am not diagnosed yet. Presently going through a bunch of tests to figure me out. I just went back to the doctor yesterday to look into what else could be causing my peripheral neuropathy besides celiac disease(even though I have all of the classic celiac symptoms). My new doctor just did a full celiac panel. which my first one did not do the first time, so I am waiting for my results. My new doctor wants to do an MRI to test for MS because of the peripheral neuropathy.

Anyway to my question, What have some of your B12 levels been when experiencing peripheral neuropathy?? When my B12 was tested 2 months ago it was 373 which is "normal". I am just wondering if anyone has had a level in the 200-500 range and still experienced the neuropathy. Did it get better with B12 injections or sublingual B12?

Thank you!

Not all MRI's do not require injectables. I have had this one done and basically they just stick you in the tube with your head restrained. They will be looking for demylinating lesions that would surround the mylin sheath. Some celiacs, especially those of us with ataxia, will have similiar lesions but they will be in the 'wrong' place to be diagnostic of MS. In the US those lesions are called UBO's or unidentified bright objects and they look just like what they are called. In other countries these are considered diagnostic of celiac but most neuros here just shrug their shoulders. Mine said 'Lot's of people have them they don't mean anything, here have a prozac.'

As far as the B12 levels go, the body stores B12 and often stops being able to utilize it long before the numbers crash. I had clear PN at a level close to 500 and by the time I dropped to 212 I had been in serious trouble for a while. The sublingual B12 made a real difference in a relatively short time. I would go ahead a get some but let you doctor know you are taking it as if he tests your levels again it will show very high when you are supplementing.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,540
    • Most Online (within 30 mins)
      7,748

    Nina J
    Newest Member
    Nina J
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
    • lmemsm
      I've used magnesium taurinate and magnesium taurate vitamins.  Didn't notice much of a difference when I used them.
    • Scatterbrain
      Anyone experimented with Taurine supplementation either via electrolyte powders or otherwise? Thanks
×
×
  • 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.