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B12, I Was Not Aware

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On WebMD I found this list of B12 deficiency symptoms



  • Feel weak, tired, and lightheaded.
  • Have pale skin.
  • Have a sore, red tongue or bleeding gums.
  • Feel sick to your stomach and lose weight.
  • Have diarrhea or constipation.
  • Numbness or tingling in your fingers and toes.
  • A poor sense of balance.
  • Depression.
  • Dementia, a loss of mental abilities.

Wow... a lot of that sounds like me, I have been trying to deal with an Ataxia type of issue for a long time related to Gluten but I seem to be getting worse with the - ---

---- Numbness or tingling in your fingers and toes.A poor sense of balance. ------

Its a combination of loss of muscle control and feeling like someone is sucking all the energy out of my body ... is so strange, and some days scary thinking I could end up in a wheel chair hooked up to a respirate if I don't get a handle on it. Well at least if feels scary like that.

I tried B12 but now on this forum Im reading people are taking larger does then I have tried and for weeks or months before getting back to normal. Geeez

I have health insurance again starting July 1st Kaiser

If any of you have suggesting on how to approach my DR. on this feel free to give me suggestions.

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I think B 12 is easily checked in a blood test.

That would be a very reasonable thing to ask your Dr. for.

Many people get shots for it, so I think it is pretty common even if you are not Celiac.

Just be straight forward and say you have a lot of the symptoms and could you have a blood test.

If the Dr. doesn't agree with a reasonable request like that, you need another Dr.

Check your D level and any other vitamin levels that can be tested for while you are at it.

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On WebMD I found this list of B12 deficiency symptoms



  • Feel weak, tired, and lightheaded.
  • Have pale skin.
  • Have a sore, red tongue or bleeding gums.
  • Feel sick to your stomach and lose weight.
  • Have diarrhea or constipation.
  • Numbness or tingling in your fingers and toes.
  • A poor sense of balance.
  • Depression.
  • Dementia, a loss of mental abilities.

Wow... a lot of that sounds like me, I have been trying to deal with an Ataxia type of issue for a long time related to Gluten but I seem to be getting worse with the - ---

---- Numbness or tingling in your fingers and toes.A poor sense of balance. ------

Its a combination of loss of muscle control and feeling like someone is sucking all the energy out of my body ... is so strange, and some days scary thinking I could end up in a wheel chair hooked up to a respirate if I don't get a handle on it. Well at least if feels scary like that.

I tried B12 but now on this forum Im reading people are taking larger does then I have tried and for weeks or months before getting back to normal. Geeez

I have health insurance again starting July 1st Kaiser

If any of you have suggesting on how to approach my DR. on this feel free to give me suggestions.

I take B-12 sublingually every morning and some take it again early afternoon. It works best with b6 for me so i dont stay awake at night. What kind of b-12 have you been taking?

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I couldn't tell from the link if that is a sublingual. If it is not then do get one that is. Your gut is damaged and won't be able to fully utilize a swallowed pill.

Also be aware that your taking this vitamin may make the levels show higher than they are in testing so ask your doctor if you should stop taking them before getting tested and how long to stop them before you test.

Great advice thanks. I was thinking celiac but steering away from Giuten has not gotten me the mileage on this that I would have hoped. Im thinking now that its more complicated as I have a cupboard full of supplements. Probiotics for what I have felt was a candida problem and lots of other stuff.

It may very well be that my gut has been trashed enough that all that stuff is not being utilized. All the testimonials i have read for all of it sounds great, but Im not gaining any ground on this as of yet. Im sure that what I was told by a Dr. when I was 9 yrs old ... a simple allergy to wheat .. may now be much more then that.

If Im mostly gluten free now, can a DR. even get an accurate test on that ? Or in advance of a test for that do I just need to start eating gluten again to get an accurate test ?

Just a passing thought.....

Im not sure my family and friends will be as supportive over all without and "official" diagnosis at this point.

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If Im mostly gluten free now, can a DR. even get an accurate test on that ? Or in advance of a test for that do I just need to start eating gluten again to get an accurate test ?

You need to go back on a regular gluten filled diet for at least 3 months before testing for celiac. Your doctor can still test for vitamin deficiences but you would need to stop the supplements for a bit beforehand. Your doctor will know for how long you need to stop them. If you are celiac or gluten intolerant and consuming even small amounts of gluten then all the money you are spending is for nothing. You may be absorbing some of them but your absorption will definately be affected by continued gluten eating.

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You're 'mostly' gluten free right now? This may be part of the reason you're not getting any better.

A dose of 10mg of gluten, around 1/9-1/10g of flour is enough to cause intestinal damage. So while your intestines might begin to heal, (slowly), almost immediately once gluten is out of your system, even minute amounts of it added will just damage them again.

I totally agree that b12 might be a big issue too/as well though, and B12 deficiency is a common problem in celiacs. Before I was dx'd with celiac, I started to feel a bit better taking 1000mg of a chewable b12+folic acid vitamin daily. (fewer crazy moments)

The reason for such the large amount that I take even though our bodies only need 4mg or something much, much smaller each day is a little complicated.

B12 itself is a large, complex molecule, and because of its size very little gets absorbed just passively when it's in your digestive system. It's just too big. The active absorption (which I presume you need healthy villi and cells to function) also requires the B12 to be already bound to a protein in order to take part. (Something like it picks up the protein, not the B12.) The end result is that since no one will ever naturally get 1000mg of B12 from regular diet, we get it from animal sources where it's already bound to whatever protein, where a much smaller amount is needed.

If you don't eat enough of it from animal sources or your intestines for whatever reason aren't working right, you wil get B12 deficiency. This is why sublingual B12 is probably best for those with ANY b12 issues. Barring that though, there is still SOME passive absorption of it, something tiny like 1% will get absorbed. (Although from what I see, celiacs who eat gluten likely have leaky gut syndrome, which would be helpful for absorbing vitamins and nutrients, cept you also absorb anything and everything else). So theoretcially if you just take large doses of B12, you will eventually get enough, which is why people take such giant doses of it orally.

Swiss naturals and jamison vitamins I believe are all gluten free (well, my vitamins say gluten-free on them at least).

Of course there might be other issues with b12 not going where it should once in your bloodstream. I haven't read anything about that

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I take a multi that has B12 in it... Anyone know if this is enough? I have the same symptoms as listed above A LOT of the time.

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You're 'mostly' gluten free right now? This may be part of the reason you're not getting any better.

A dose of 10mg of gluten, around 1/9-1/10g of flour is enough to cause intestinal damage. So while your intestines might begin to heal, (slowly), almost immediately once gluten is out of your system, even minute amounts of it added will just damage them again.

I totally agree that b12 might be a big issue too/as well though, and B12 deficiency is a common problem in celiacs. Before I was dx'd with celiac, I started to feel a bit better taking 1000mg of a chewable b12+folic acid vitamin daily. (fewer crazy moments)

The reason for such the large amount that I take even though our bodies only need 4mg or something much, much smaller each day is a little complicated.

B12 itself is a large, complex molecule, and because of its size very little gets absorbed just passively when it's in your digestive system. It's just too big. The active absorption (which I presume you need healthy villi and cells to function) also requires the B12 to be already bound to a protein in order to take part. (Something like it picks up the protein, not the B12.) The end result is that since no one will ever naturally get 1000mg of B12 from regular diet, we get it from animal sources where it's already bound to whatever protein, where a much smaller amount is needed.

If you don't eat enough of it from animal sources or your intestines for whatever reason aren't working right, you wil get B12 deficiency. This is why sublingual B12 is probably best for those with ANY b12 issues. Barring that though, there is still SOME passive absorption of it, something tiny like 1% will get absorbed. (Although from what I see, celiacs who eat gluten likely have leaky gut syndrome, which would be helpful for absorbing vitamins and nutrients, cept you also absorb anything and everything else). So theoretcially if you just take large doses of B12, you will eventually get enough, which is why people take such giant doses of it orally.

Swiss naturals and jamison vitamins I believe are all gluten free (well, my vitamins say gluten-free on them at least).

Of course there might be other issues with b12 not going where it should once in your bloodstream. I haven't read anything about that

Interesting. What I need is a diagnosis but I don't relish eating gluten every day for several weeks to make sure I get an accurate test but I guess Im up for it if I have to. Kaiser has done a very good job from what I understand in the celiac area so Ill play along at this point.

I clearly need help to sort through this one.

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