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Vitamin Deficiency Neuropathy

Guest Eagle

By Guest Eagle
in Post Diagnosis, Recovery & Treatment of Celiac Disease

Recommended Posts

Guest Eagle
Guest Eagle
Posted

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.

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RiceGuy Collaborator
RiceGuy
Posted

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
darlindeb25
Posted

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
mamabear
Posted
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
darlindeb25
Posted

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
Nancym
Posted

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
WakeupNurse
Posted
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!

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  • 1 year later...
jeremy24 Newbie
jeremy24
Posted
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
Lizz7711
Posted

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
Nancym
Posted

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
ravenwoodglass
Posted

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
NicoleAJ
Posted
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
sumichls
Posted
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
AndrewNYC
Posted

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
ShayFL
Posted

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.

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    • knitty kitty
      Struggling to get into a good pattern

      By knitty kitty · Posted

      @Rejoicephd, Would you consider adding a B Complex to your supplements?   I was taking a multivitamin and still became deficient.  There's a question as to how well multivitamins dissolve in the digestive system.   I found taking a B Complex and Benfotiamine, a form of thiamine shown to promote intestinal healing, very beneficial in my recovery.   Some B Complex supplements use Thiamine Mononitrate which is not well absorbed nor utilized by the body.  Thiamine Hydrochloride is better.  Benfotiamine is easily absorbed.  If not needed, the B vitamins are easily excreted. High B12 out of the blue could be masking a lack of other vitamins that work with B12, like Folate B 9, Pyridoxine B 6, and Thiamine B 1. Meats and liver are great sources of B vitamins.  B vitamins are needed to make digestive enzymes that digest protein, fats, and carbohydrates.   Do keep in mind that most gluten free processed facsimile foods are not required to be enriched with vitamins and minerals lost in processing like their gluten containing counterparts.  The more carbohydrates you eat, the more Thiamine is needed to process them into energy instead of storing them as fat.   Hope this helps!  Keep us posted on your progress.
    • knitty kitty
      almost a year in recovery - so many questions about to give up

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      @kopiq,  Your case is not hopeless.  Doctors are not required to learn much about nutrition.  Celiac Disease causes damage to the lining of the small intestines resulting in malabsorption of essential vitamins and minerals.  The eight essential B vitamins  and the four fat soluble vitamins (A, D, E, and K) are chemical compounds that our bodies cannot make, so we must get them from what we eat.  If we're not absorbing sufficient amounts from our food, then supplementing with vitamins and minerals help boost our ability to absorb them.  The B vitamins are safe and water soluble, easily excreted in urine if not needed or not absorbed.  Essential minerals are important, too.  Magnesium and Thiamine make life sustaining enzymes together.   Blood tests for the B vitamins are notoriously inaccurate.  By the time a deficiency shows up in the blood, you've been deficient for a few years. The best way to tell is to try taking a  B Complex and looking for health improvements. Taking a B Complex and Benfotiamine, a form of thiamine shown to promote intestinal healing, helped me immensely.  I also took Vitamin D and Magnesium Glycinate and others. Did your doctor offer any treatment to correct your critically low Vitamin D level?   Mine was lower than yours.  My doctor prescribed the less bioavailable form D2.  Our bodies utilize the D3 form better.  I bought over the counter Vitamin D3 supplements (1000 IU) and took several with each meal.  Taking high doses of Vitamin D to correct a deficiency is safe and very effective at improving health.  I started feeling better quickly.  Vitamin D helps regulate the immune system and lower inflammation, as well as makes hormones. Laying out in the sun cannot correct a Vitamin D deficiency unless you're below the 33rd parallel (on a tropical island with abundant exposed skin for several months).  Ultraviolet rays from the sun destroy the thiamine in the body.  That feeling of lethargy is because the sun exposure broke down thiamine into unusable pieces.  Thiamine and the B vitamins make ATP, the energy currency the body requires to function, to make digestive enzymes, to regulate body temperature, to think, to heal itself.  We need more Thiamine when we're outdoors in hot weather, working or exercising.  Thiamine deficiency doesn't cause heat stroke, but thiamine deficiency can make heat stroke symptoms worse.  We need more Thiamine when we're physically ill or injured or undergoing medical procedures.  We need more Thiamine when we're emotionally stressed or traumatized.  Anxiety and depression are very early symptoms of thiamine and other nutritional deficiencies.   Rashes can be caused by deficiencies in Niacin B3, Vitamin A, or Vitamin C.  Some rashes can become worse with exposure to sunlight.   The B vitamins are needed to make digestive enzymes that will help you digest fat and proteins better.  Meats are an excellent source of B vitamins.  Sweet potato and plantain are high in carbohydrates.  The more carbohydrates one eats, there is a greater metabolic need for thiamine to turn them into energy, ATP. Can your doctor refer you to a dietician or nutritionist?
    • Rejoicephd
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      By Rejoicephd · Posted

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    • trents
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      Yes, the development of additional food intolerances is a common spinoff of celiac disease. To ensure valid testing after beginning a "gluten challenge" you would need to be consuming at least 10g of gluten daily (about the amount in 4-6 slices of wheat bread) for at least two weeks. Many cannot follow through with this regimen, however, as their intolerance reactions are just too strong and present too much health risk.
    • junell
      Help!

      By junell · Posted

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