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B12 Supplements help with nerve pain?

Jen1104

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Jen1104 Contributor
Jen1104
Posted

Hey everybody,

I'm pretty new to the forum and to having probable celiac disease. I have an EXTREME reaction to gluten and gastro doc said he saw some flattened villi, but the biopsies were negative.  I've been strictly Gluten-Free for about 10 months and my stomach and other gastro problems are about 90% better, which is huuugggge! :) However, I have had intense burning nerve and muscle pain for many years, which have not been helped yet with Gluten-Free diet.  The worst of the burning pain is in my hands, feet, and calves, as well as burning in my face. 

I had many of my vitamins checked a few months ago and B12 was the only one that was low.  My B12 was 188. I've read that normal is 200-800.  Since finding out I was low, I have been supplementing for about 4 months with 500 mcg sublingual with no improvement in pain or fatigue or anything else! 

Wondering if anyone else was eventually helped with this type of pain by taking B12.  Should I be taking a higher dose??  I would like to try injections but dr said I just needed supplement.

Also, if anyone knows, what is the most absorbable form of B12?

Thanks for any and all input.  I've learned more on this forum than any dr, that's for sure!

Jen

 

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Ennis-TX Grand Master
Ennis-TX
Posted
1 hour ago, Jen1104 said:

Hey everybody,

I'm pretty new to the forum and to having probable celiac disease. I have an EXTREME reaction to gluten and gastro doc said he saw some flattened villi, but the biopsies were negative.  I've been strictly Gluten-Free for about 10 months and my stomach and other gastro problems are about 90% better, which is huuugggge! :) However, I have had intense burning nerve and muscle pain for many years, which have not been helped yet with Gluten-Free diet.  The worst of the burning pain is in my hands, feet, and calves, as well as burning in my face. 

I had many of my vitamins checked a few months ago and B12 was the only one that was low.  My B12 was 188. I've read that normal is 200-800.  Since finding out I was low, I have been supplementing for about 4 months with 500 mcg sublingual with no improvement in pain or fatigue or anything else! 

Wondering if anyone else was eventually helped with this type of pain by taking B12.  Should I be taking a higher dose??  I would like to try injections but dr said I just needed supplement.

Also, if anyone knows, what is the most absorbable form of B12?

Thanks for any and all input.  I've learned more on this forum than any dr, that's for sure!

Jen

 

A sublingual in liquid form is best...and you want a spectrum one that covers not just B12 as they work in combinations. Other thoughts with your nerve issues. A MAJOR issue with many celiacs is magnesium, it can cause numbness, muscle cramps (really noticeable in the legs in the morning), constipation, and a burning nerve prickly feeling when really bad. If you have Constipation look like Natural Vitality Calm if you do not look at Doctors Best Magnesium Glycinate both in powdered form, trick is you have to dose these to each person. The Calm one start at 1/4tsp and over the period of a week or two slowly up it til you reach the full dose..or get loose stools at which point your take it down. (dosing to tolerance) The Doctors best is easier on the gut, you just take a scoop it of it once or twice a day.....you will notice odd dreams if you dose this right. I get very vivid and lucid dreams on it.
I use 2 different B vitamins blends from LIquid health 1tbsp each 3 times a day before meals.
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Jen1104 Contributor
Jen1104
Posted
  • Author

Appreciate your thoughts on this Ennis.  I've been taking 500 mg of magnesium for a few years and my mag levels were at moderate levels.  I just take magnesium oxide form but will look into the liquid form to see if it absorbs better.  And probably up my B12 too.  Thanks for recommendations that work for you!

My nerve pain is a bit better today.  It's been really bad for a couple of weeks.  I ate some "gluten free" bread and pasta in one day when the worse pain started (which I haven't eaten for about 6 months because I'm on mostly paleo diet, not just gluten free)  I'm thinking I got too much trace gluten in one day!  The next day I had the burning nerve pain, I was walking sideways, extreme anxiety where I just had to try to sleep it off. Really messed up!

Ennis-TX Grand Master
Ennis-TX
Posted
13 minutes ago, Jen1104 said:

Appreciate your thoughts on this Ennis.  I've been taking 500 mg of magnesium for a few years and my mag levels were at moderate levels.  I just take magnesium oxide form but will look into the liquid form to see if it absorbs better.  And probably up my B12 too.  Thanks for recommendations that work for you!

My nerve pain is a bit better today.  It's been really bad for a couple of weeks.  I ate some "gluten free" bread and pasta in one day when the worse pain started (which I haven't eaten for about 6 months because I'm on mostly paleo diet, not just gluten free)  I'm thinking I got too much trace gluten in one day!  The next day I had the burning nerve pain, I was walking sideways, extreme anxiety where I just had to try to sleep it off. Really messed up!

I make my own paleo bread in my bakery based off of Julian Bakery bread loafs. It is a gluten, grain, and starch free loaf. Also no xantham gum, Look up julian bakery for bread. They ship theirs by the 3 pack. the coconut and almond are good but they have a good deal on the 3 pack sampler right now. Wish my bakery was allowed to ship our goods but health code and legal reasons we can not right now (at least on the books to customers).
Magnesium Oxide has a VERY low absorbancy. the ones  mention are powders you mix in a beverage....much easier to get into your system.

Jen1104 Contributor
Jen1104
Posted
  • Author

Very cool you have your own bakery B)

I've tried making own grain free bread and it was expensive and pretty much tasteless.

I will definitely check out the Julian Bakery loafs.

Thanks for the tips!

plumbago Experienced
plumbago
Posted
On 12/30/2017 at 1:11 PM, Jen1104 said:

Hey everybody,

I'm pretty new to the forum and to having probable celiac disease. I have an EXTREME reaction to gluten and gastro doc said he saw some flattened villi, but the biopsies were negative.  I've been strictly Gluten-Free for about 10 months and my stomach and other gastro problems are about 90% better, which is huuugggge! :) However, I have had intense burning nerve and muscle pain for many years, which have not been helped yet with Gluten-Free diet.  The worst of the burning pain is in my hands, feet, and calves, as well as burning in my face. 

I had many of my vitamins checked a few months ago and B12 was the only one that was low.  My B12 was 188. I've read that normal is 200-800.  Since finding out I was low, I have been supplementing for about 4 months with 500 mcg sublingual with no improvement in pain or fatigue or anything else! 

Wondering if anyone else was eventually helped with this type of pain by taking B12.  Should I be taking a higher dose??  I would like to try injections but dr said I just needed supplement.

Also, if anyone knows, what is the most absorbable form of B12?

Thanks for any and all input.  I've learned more on this forum than any dr, that's for sure!

Jen

 

How often are you taking the 500 mcg?

As for injections (the most effective absorption method), a lot of times, clinics will give daily shots for 5 days then weekly shots, and taper thereafter to once a month. Usually that is for people with pernicious anemia. It is important to find out the reason you are B12 deficient, and, for example, to rule out pernicious anemia. Sublingual seems to be more effective than oral tablets. You can talk to your doctor further about the possibility of getting injections. You can even ask them to teach you how to do it, so you don't have to go to the clinic or office every time. It's easy (I do it myself). I don't have PA, as far as I know.

The key in all this, in addition to finding the root cause, is also to check your levels after a steady consistent period of the sublingual supplementation. Maybe it really is working, and injections are not needed. Also, you may give it more time. A few months is not that long (to me). But get your levels checked before deciding on a different route of supplementation.

Peripheral neuropathy, is such a large, almost vague term, and it has many causes. Are you by chance on any medication for blood sugar control? I'm guessing no, that you would have mentioned it if so.

You may try experimenting with other ways of eating and, for example, to see if reducing grains and sugar help. The forum is great, I agree!

Plumbago

Jen1104 Contributor
Jen1104
Posted
  • Author

Plumbago,

I take 500 mcg a day of B12, I'm thinking of doubling the dose.  I just had blood drawn again last week to see if B12 has gone up any in 4 mo. with sublingual.  I haven't gotten my results yet though.

I've had blood sugar checked recently, it's in normal range, so diabetes wouldn't be a cause of my neuropathy.

I have been gluten free for 10 months, and grain and dairy free for the most part for 8 months as well as low sugar.  I feel like I'm sensitive to nightshades and eggs so I avoid those also.  90% of the time I eat natural, unprocessed foods.  I've had these pains and other issues for 25 years and starting to think I've had undiagnosed celiac for that long.

It sure would be nice to find the root cause of a medical problem, wouldn't it?! :wacko:  All docs want to do is treat symptoms which usually only causes more problems.  But that's a whole other conversation!

Thanks for your thoughts!

 

 

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cyclinglady Grand Master
cyclinglady
Posted

Jen,

Has MS been ruled out?  You can have more than one autoimmune disorder.  

 

Jen1104 Contributor
Jen1104
Posted
  • Author

Hey Cyclinglady,

I went to Mayo's clinic about 20 years ago and was tested for MS, and it was ruled out.  Mayo's diagnosed me with fibromyalgia.  I've thought about having MS tested again. From what I've read though, there's not a definitive test for MS (if I remember correctly).  No one in my family has MS or any other autoimmune disorders.  But I should look into it, huh?  I've just gotten to the point where I despise the thought of even going to a new doctor.

cyclinglady Grand Master
cyclinglady
Posted

Jen,

When you described the nerve pain, it sure sounded like my MIL’s — burning.    She had MS (we suspect celiac disease as well now as her son has been gluten free for 17 years).  

Ten months into the Gluten Free diet is a pretty short amount of time.  I can tell you that members report that nerve pain takes the longest to heal.  So, keep at the diet and try to be patient.  If you are worried about B-12, then look for good food sources.  

 

plumbago Experienced
plumbago
Posted
1 hour ago, Jen1104 said:

Hey Cyclinglady,

I went to Mayo's clinic about 20 years ago and was tested for MS, and it was ruled out.  Mayo's diagnosed me with fibromyalgia.  I've thought about having MS tested again. From what I've read though, there's not a definitive test for MS (if I remember correctly).  No one in my family has MS or any other autoimmune disorders.  But I should look into it, huh?  I've just gotten to the point where I despise the thought of even going to a new doctor.

Have you heard of Dr Terry Wahls? She is an Iowa doctor in a VA there - she herself has MS, and has written about it. I recommend doing some googling and maybe checking out one of her books from the library.

Jen1104 Contributor
Jen1104
Posted
  • Author

Yes, I have heard of her and just read a bit about the diet online.  I wouldn't mind reading one of her books.  It seems like a pretty extreme diet but I'd do just about anything to feel better!

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