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Has anyone had extremely low B12 prior to going on the gluten-free diet and then had their levels brought up only to find that they were low again years later despite following the gluten-free diet consistently during that time?

I was diagnosed with celiac disease in 1997.  For 3 years prior to that diagnosis, I had extremely low B12 and was receiving monthly B12 shots.  At the time of the cd diagnosis, it was found that both B12 and beta carotene were extremely low.  After going on the gluten-free diet for 6 months (and receiving no supplements/shots of B12 or beta carotene) both levels went to above normal.  The G.I. doctor that I was seeing told me that it was because my body was absorbing vitamins like it should have been hence why the levels went up on their own.  He didn't recommend further checks.

I've been religious about being gluten-free (i.e. following the diet with occasional cross-contamination problems but no outright cheating).  Around January of this year I began to experience the burning type feeling in my legs - it's as if someone has poured warm liquid on my skin - not painful but kind of annoying.  I reported this to my doctor and told him that the only other time I experienced this was when my B12 levels were low - he checked it and lo and behold my levels were extremely low.   I started receiving B12 shots once a month and this past month, I began having not only the burning feelings in my legs but in my arms, too (never had that happen before).  I just had another shot the other day and he now wants me to go on to Nascobal, a nasal spray (I ask questions on this in another e-mail).

Should I make an appointment with a G.I. doctor?  Is it normal to have a low B12 again even after following the diet for so many years and after initially having improved the B12 levels in the beginning just by starting the diet?

I'm worried about the low B12 -- I don't seem to be responding to the shots - i.e. I still have the burning feeling in my legs and arms and I'm tired all the time.  The doctor mentioned something about pernicious anemia but didn't elaborate on whether or not that was what I had.  Many moons ago when my B12 was low (and they didn't know I had cd), they did a schilling test which was negative.

Any advise, suggestions would be appreciated.

Deb

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