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B12 level 1777

charks
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charks Contributor
charks
Posted

Before I had my seizure in April- which I believe tipped me over into full blown celiac disease - my symptoms were mainly neurological. I did have a big bloated stomach and terrible indigestion but no problems with BM. That changed after the seizure. It was over 3 weeks until I had another BM. But I had been experiencing neurological problems before the seizure and afterwards they were very severe. A&E kept me for 7 hours and gave me a brain CT scan. They could find nothing medically wrong with me and discharged me. But it was obvious something was very wrong. I couldn’t walk, couldn’t speak and had no bladder control. My partner made many desperate calls to our doctor and finally thought he’d got me a doctors appointment a week after my discharge. But it was only a nurse who took more blood tests. In the meantime I investigated on the ‘net and realised that my symptoms pointed to gluten problems. I stopped eating gluten the day after my discharge and, on the advice of this forum, I started taking 1000mcg of B12 daily. Within a week I was so much better. I dread to think what might have happened without this forum.

 

In the end I had to change doctors and didn’t get tested for celiac disease for over 2 months - by which time it was too late, the test was negative. The doctor offered me the gluten challenge which I declined. Why expose myself to the possibility of permanent damage when there is currently no cure?

My B12 level was 347 which the doctor said was normal. However I still had some neurological problems. I read on this site that people with levels in the 300’s are more likely to have neurological symptoms so I decided to double my B12 dose.

I have just had another blood test and my level is 1777. Everything else on my blood tests is normal.

The doctor says to stop my B12 supplement. I would normally do what my doctor tells me but I don’t think he has much experience with celiac disease. He gave me medicine with gluten in it. Will this be safe? I don’t want to drop down to levels in the 300’s and get neurological problems again. Can I overdose on B12?

Any advice please.

 

 

 

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Scott Adams Grand Master
Scott Adams
Posted

While I don't think that you can overdose (I may be wrong here), but there is such a thing as too much of a good thing. I too have supplemented for years on B12, and my levels were similar to yours. I've had issues for years of having a high red blood cell count, and B12 increases production of red blood cells (among other things), so I've cut back quite a bit. Perhaps you can taper off an reduce the amount you take. I would recommend switching now to a good gluten-free B vitamin supplement, as you may have other B vitamin deficiencies.

Are you also taking vitamin D? This one you can overdose on, but most celiacs also need to supplement this as well. Look into Magnesium citrate and zinc with copper as well.

It's great to hear that your symptoms are improving, and they should continue to do so for months to come.

knitty kitty Grand Master
knitty kitty
Posted
(edited)

Charks,

I agree with Scott.  Switch to a B-Complex supplement.  

B12 is just one of eight essential B vitamins.  They are interdependent on each other to function properly.  A B-Complex supplement will have all the B vitamins together in proper balance.

Here's an article that explains it...

https://www.healthline.com/nutrition/vitamin-b-complex

 

And I found this article about a child with thiamine deficiency who had high levels of B12.  By correcting the balance with thiamine, his high B12 returned to normal. 

https://www.hormonesmatter.com/high-folate-vitamin-b12-low-thiamine-autism/

I have had the swollen neck glands which have reduced in size with thiamine supplementation.  I take a B-Complex and extra thiamine to help with my Type Two Diabetes.  

P.S.  Thiamine, niacin and pyridoxine are necessary for proper neurological functions.  

 

 

Edited by knitty kitty
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