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

Vitamin Deficiency Neuropathy


Guest Eagle

Recommended Posts

Guest Eagle

Hello, I was just diagnosed as celiac and casein intolerant after I had overdosed on some toxic food. I didn't realize that I had a B6 deficiency and the doctor didn't even check my B levels when I came in with neuropathy. It really did a number on me before I figured out what was wrong. Has anyone had this happen and recovered completely? I have alot of numbness and burning and a bit of short term memory loss.


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



Celiac.com Sponsor (A8-M):



RiceGuy Collaborator

I also have experienced quite a bit of numbness, along with muscle/joint pains, twitching, spasms, weakness, etc.

What I've found most helpful are both a sublingual methylcobalamin supplement, and a magnesium supplement. The improvements are thus far astounding to me. I wish I had started them a long time ago. Since my digestive system would never handle a solid pill, the magnesium I chose is a powder, which makes it easy to mix into meals, fruit juices, and smoothies. It also makes for quicker/better absorption, which I'm sure is a good idea in my case.

I'm sure others will have fine suggestions for you to try/look into as well.

darlindeb25 Collaborator

B6 is helpful with neuropathy, yet generally it is a B12 deficiency that causes neuropathy for celiac's. I take 2400mcg of B12 daily. Have your doctor do blood work up for B12. Some doctors say that a level of say--400 is good, but it's not, that is way too low.

I have never been told about magnesium, I will have to research that.

mamabear Explorer
I also have experienced quite a bit of numbness, along with muscle/joint pains, twitching, spasms, weakness, etc.

What I've found most helpful are both a sublingual methylcobalamin supplement, and a magnesium supplement. The improvements are thus far astounding to me. I wish I had started them a long time ago. Since my digestive system would never handle a solid pill, the magnesium I chose is a powder, which makes it easy to mix into meals, fruit juices, and smoothies. It also makes for quicker/better absorption, which I'm sure is a good idea in my case.

I'm sure others will have fine suggestions for you to try/look into as well.

I get similar symptoms( except weakness) and have also found calcium/magnesium/zinc tablets and a prescription vitamin called Metanx for being very helpful. Metanx has biologically active forms of B12,B6 and Folate and is very strong. I have backed off on that to every other day now after 4 months daily use. I also get better when I can exercise. Anyone else seen this?

darlindeb25 Collaborator

I have neverheard of Metanx, I do not think I have ever read about it in my neuropathy forums. Didn't know it existed. I may research that--thanks.

Nancym Enthusiast

I take a B complex, B12 sublingually AND folic acid. If you are low in B12 and supplement folic acid it can make cognitive functioning worse, so I get both together. My neurological symptoms are VASTLY better. I think supplementing vit. D3 also helped a lot too.

WakeupNurse Newbie
Hello, I was just diagnosed as celiac and casein intolerant after I had overdosed on some toxic food. I didn't realize that I had a B6 deficiency and the doctor didn't even check my B levels when I came in with neuropathy. It really did a number on me before I figured out what was wrong. Has anyone had this happen and recovered completely? I have alot of numbness and burning and a bit of short term memory loss.

I think this is pretty common among celiacs but also many people with other autoimmune diseases. It can be pretty scary when you quit feeling your feet and hands like you should and can't remember things like before! I have a lot of neuropathy issues also. Mine are mostly caused from malabsorption and pernicious anemia (low B12). A good fish oil omega three supplement can help with neuropathy, as well as B12 or Bcomplex supplementation. There is also a med called Cerefolin with NAC out there that is prescribed for neuropathy that is several vitamins (B6, folate, methylcobalamin, & NAC if I'm not mistaken) that is often prescribed to diabetics with neuropathy that might help. Making sure you're getting enough of your calcium, potassium, and magnesium will help also. I wound up taking my vitamins in shot form because my absorption is so poor we couldn't ever get my levels up. Good luck!


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



Celiac.com Sponsor (A8-M):



  • 1 year later...
jeremy24 Newbie
Hello, I was just diagnosed as celiac and casein intolerant after I had overdosed on some toxic food. I didn't realize that I had a B6 deficiency and the doctor didn't even check my B levels when I came in with neuropathy. It really did a number on me before I figured out what was wrong. Has anyone had this happen and recovered completely? I have alot of numbness and burning and a bit of short term memory loss.

I've been recently are going to be going through test based on burning and numbness throughout my legs and arms. I've also had a MRI that showed my disc in my back are degenerate and are moving to my spine. I've also had a colonoscopy because there was blood in my stool. The doctors don't think that there connected, I do. The one doctor thinks that it could be neuropathy and the other thinks that there could be a calcium deficiency. Did you also have burning in your spine or have any other of these symptoms

Lizz7711 Apprentice

Just be aware that taking too much B6 in the Hcl form can also cause neuropathy, this happened to me when taking about 150mg per day. It's safer to take in the P5P form, but it's hard to find. I'm currently taking Country Life's activated B6 with P5P. If you were deficient, this may not be an issue for you, i'm not sure...but i'd still advise the P5P form instead if you can get it.

I think most short term nerve damage is usually reversible, so just give it a few weeks :)

Hello, I was just diagnosed as celiac and casein intolerant after I had overdosed on some toxic food. I didn't realize that I had a B6 deficiency and the doctor didn't even check my B levels when I came in with neuropathy. It really did a number on me before I figured out what was wrong. Has anyone had this happen and recovered completely? I have alot of numbness and burning and a bit of short term memory loss.
Nancym Enthusiast

You might as well get started on supplements. I think your damage can probably be repaired, I've heard of other folks doing it.

ravenwoodglass Mentor

Yea I agree get started with the B12 as soon as you can. I started having celiac related nerve issues at about 5 and had progressed to some very serious issues by the time I was diagnosed decades later. I have been amazed at how much nerve recovery I have had. The tingling and such stopped within a couple months of starting the B12 for me. The other issues like loss of reflexes, dead leg etc did take much longer to repair.

NicoleAJ Enthusiast
I've been recently are going to be going through test based on burning and numbness throughout my legs and arms. I've also had a MRI that showed my disc in my back are degenerate and are moving to my spine. I've also had a colonoscopy because there was blood in my stool. The doctors don't think that there connected, I do. The one doctor thinks that it could be neuropathy and the other thinks that there could be a calcium deficiency. Did you also have burning in your spine or have any other of these symptoms

This is interesting. I've actually had the same symptoms. I didn't react very well to the sublingual B12, so I take injections of B12 every two weeks, and that has really helped the neuropathy symptoms. As far as the degenerated spinal disks--I've had that too, and my doctor told me that is a totally normal finding for a 29 year old because the disks do break down over time.

I've had blood in my stool and occult bleeding of the GI tract on and off for about 4 years now. I've had 4 colonoscopies, 2 capsule endoscopies, 2 endoscopies, 2 small bowel follow throughs. They always find chronic inflammation, but then do not find the exact source of the bleeding, which is very strange since the stool tests and my ferritin levels show that I'm losing a lot of blood. They keep thinking it's Crohn's and then they don't find it. Let me know if they find the source of your rectal bleeding.

sumichls Newbie
Hello, I was just diagnosed as celiac and casein intolerant after I had overdosed on some toxic food. I didn't realize that I had a B6 deficiency and the doctor didn't even check my B levels when I came in with neuropathy. It really did a number on me before I figured out what was wrong. Has anyone had this happen and recovered completely? I have alot of numbness and burning and a bit of short term memory loss.
Yes! I have peripheral neuropathy in my feet. I wholeheartedly believe it is a result of nutritional deficiencies. I was told that sometimes it is reversable, that only time will tell.
AndrewNYC Explorer

It is potentially reversible. There are two different causes but most doctors who are not in the know will chalk it up to only one. They cite nutritional deficiency which on its own can cause neuropathy, and can be reversible. Doctors who are more familiar with celiac and allergies know that there is also an immuno response that can cause neuropathy. This is separate from vitamin deficiency. You can have normal nutrition and have neuropathy from immuno-allerginic response. This too can be reversible. On the other hand, both could be non reversible if left uncorrected for too long. You will need to give it lots of time. Maybe 6 months or more. Stay on the most basic diet that you can. Avoid gluten foods that were manufactured with potential for cross contamination. Consider yourself to be super sensitive.

ShayFL Enthusiast

B vitamins have not helped my neuropathy. I take them everyday (not more than 100 B6), full spectrum and 10000 B12). Have been for a year. I have recently discovered (last 4 months) that I am severely deficient in Vitamin D and I have very low Ferritin (Iron). Both of these can contribute to neuropathy. So under my doctor's supervision, I am now taking 5000 IU Vit. D a day and 200 Iron.

I am hopeful that one of these will be the key. I was taking 1/2 the amount of Vit. D and no iron for the last 4 months. I only got my Vit. D a little. A long way to go to be optimal.

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 catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      how much gluten do I need to eat before blood tests?

    2. - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

    3. - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,323
    • Most Online (within 30 mins)
      7,748

    bttyknight83
    Newest Member
    bttyknight83
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
×
×
  • 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.