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Very High B Vitamin Levels--Why?!?!

brookevale

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brookevale Newbie
brookevale
Posted

Hi,

 

Since I had major abdominal surgery in October, followed by a sepsis incident where I was administered Levaquin and steroids in ICU, my vitamin b blood levels have been high--over the maximum range. My b1, b2, b6, b9 (folate), and b12 are all high. None of my doctors can figure it out. I've read that high levels are abnormal as b vitamins are water soluble and should go right through me. Plus, I don't supplement with vitamins. I also read that high blood levels can actually mean my body isn't metabolizing b vitamins correctly and I could have deficiencies. I have had terrible nerve and joint pain since then as well that I never had before. I keep coming up negative for celiac antibodies and sprue but have genetic marker for celiac. I try to go completely gluten free but will be honest that I haven't been great about it. I also have severe intolerances to dairy and fructose. Anyone have experience with this? Thanks.

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frieze Community Regular
frieze
Posted

Hi,

 

Since I had major abdominal surgery in October, followed by a sepsis incident where I was administered Levaquin and steroids in ICU, my vitamin b blood levels have been high--over the maximum range. My b1, b2, b6, b9 (folate), and b12 are all high. None of my doctors can figure it out. I've read that high levels are abnormal as b vitamins are water soluble and should go right through me. Plus, I don't supplement with vitamins. I also read that high blood levels can actually mean my body isn't metabolizing b vitamins correctly and I could have deficiencies. I have had terrible nerve and joint pain since then as well that I never had before. I keep coming up negative for celiac antibodies and sprue but have genetic marker for celiac. I try to go completely gluten free but will be honest that I haven't been great about it. I also have severe intolerances to dairy and fructose. Anyone have experience with this? Thanks.

Have you had the test rerun?  Occasionally you will that such things are lab error.  good luck

nvsmom Community Regular
nvsmom
Posted

When I was diagnosed with celiac disease a year ago, I had my B12 checked and it was high. It was 896 with a normal range of 155-700. I just assumed that was good. I recently found out that it can mean a liver problem, and those aren't rare amoung recovering celiacs.  My liver appears to be healthy though.

 

I recently had my B12 levels checked again, after 1 year gluten-free, and they have come down to 694.  I don't know if it's due to being gluten-free or some other reason.

 

It's interesting that you brought this up because I am definitely a rarity around here. There are many with low B12, but I don't think I've met anyone else that had a high one.

 

I too had quite bad joint pain, to the point that I didn't believe it could be celiac related and started to go to doctors for suspected rheumatic problems. The rheumy thought it was all caused by my celiac and that it will clear up with adherence to the gluten-free diet. I'm hoping she proves to be correct. So far, my joint pain, which would make it hard to hold a book, has been improving ever since I passed the 6month gluten-free mark. It actually got much worse at 2 months in, so if you are going to give the gluten-free diet a try, I suggest giving it at least 6 months before you decide if it is helping. I also suggest keeping a food and symptoms journal, I found my symptoms improved so slowly that I barely noticed but if I looked back a month or two, I was able to see the difference.

 

What celiac tests did you have done? Some doctors just run the tTG IgA, and it only catches 75-95% of all celiac cases. It is best to run a variety of tests because not many celiacs test positive in all tests... hardly any that I've seen.

 

Celiac panel:

  • tTG IgA and tTG IgG
  • EMA IgA
  • DGP IgA and DGP IgG
  • total serum IgA - a control test as 5% of celiacs are too low in IgA for those tests to be accurate
  • AGA IgA and AGA IgA

This report discusses the tests and their sensitivies starting on page 11: Open Original Shared Link

 

The first three tests all test for damage to the villi of your intestine which is always one of the results of a celiac's gluten sensitivity (although the blood work isn't always positive). The AGA tests are the only tests that show gliadin (gluten) sensitivity and are thought by some to be a good test for Non-Celiac Gluten Sensivity (NCGS). Those with NCGS have all the same symptoms as a celiac (including pain) but do not have villi damage - it's possible you have NCGS, which is much more common than celiac disease is.

 

If you think you are NCG, you could request the AGA tests but not all doctors are versed in that test. You could also do a gluten-free trial. You'll need to be 100% gluten-free to get the full benefits. It only takes microscopic amounts of gluten to set back celiacs and those with NCGS so if you eat a crumb of bread every two weeks, that could stall any health gains for an entire month.  Unfortunately.  :(

 

I hope you feel better soon, and good luck with whatever you decide to do.  :)

cyclinglady Grand Master
cyclinglady
Posted

Wow!  I've looked at your other postings and can see you been through so much.   It struck me hard, as my Aunt had the same issues as you.  It's a family gallbladder curse that may or may not be linked to celiac disease.  My gallbladder has been removed, but I occasionally have the same symptoms of a non-functioning gallbladder (passed out and spent two days in the hospital two weeks ago only to find that I "didn't have a heart attack!")   

 

I can't address your B vitamins question, however; I urge you to do some research on Levaquin, (fluoroquinolone).  Here's a government link to the what's written on the drug fact sheet put out by the manufacturer.  The FDA has required them to add a black box warning, so this is a pretty scary drug.  

 

Open Original Shared Link

 

 

 

I had this drug (my brand was Cipro) after my gall bladder surgery seven years ago   A month or so later, I started to get peripheral neuropathy is my foot.  It was like an insect was in my foot and I would get an electrical shock that lasted for about 30 seconds but would occur several times a day.  This lasted six months.  I did some research and found that there are many patients who have horrible reactions form this drug.  Granted, if I were dying, I'd take the drug, but I wouldn't take it again unless it was really necessary!  I really was concerned about the snapping tendons since I'm a runner and cyclist.  

 

So, your nerve and joint pain may be the result of using this drug.  It's worth researching it.  

 

Good Luck to you.  

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