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Hello everyone,

Some time back, I posed a question asking if anyone else out there who might have B12 vitamin deficiences re-occur even after they'd been gluten-free for some time.  Several of you posted back and many suggested that perhaps it is a thyroid problem.

My question to you is this - how many of you who have been gluten-free for X years but continue to have vitamin deficiences - and how many have been told that your thyroid function is within the normal range but may be borderline?  How have you handled it - what kind of doctor have you seen, what kind of symptoms have you had and how were they rectified?

I have had my TSH tested and my primary care doctor said it was "normal" and wanted to drop the issue.  I asked what the level was and although it was in the range, it was on the low end.  Considering my symptoms and family history, I asked for the Free T3 and T4 labs to be drawn - I'm still waiting on those results.

In the meantime, I've been doing a bit of research on how thyroid problems can affect other things - B12, cholesterol and triglycerides amongst them.  I am 42 years old I've been gluten-free for 7 years and had perfect cholesterol until 2 years ago.  My diet hadn't changed to warrant it but my cholesterol was suddenly 225+ and triglycerides were out of sight.  Sadly, I cannot tolerate any of the statin cholesterol meds and my labs only barely improved after being on Zetia 10 mg for 2 months.  One year ago, my B12 levels dropped to the floor (275 when the range is 211-911).

If the FT3 & FT4 come back "normal" (i.e. within the range of normal), I will still be making an appointment with an endocrinologist because I feel there are too many symptoms to ignore I want to get to the bottom of it before it gets worse than it already is.  Right now, the periods of overwhelming fatigue & weariness come once a day or every couple days and lasts for a few hours and thankfully drifts away.  I've had a heat intolerance problem that is worse than it's ever been and it's affecting daily life.  B12 does not go over 400 despite shots or nasal B12 (plus I still have the weird burning liquid type feeling in my legs and arms which signals low B12 to me - it was that symptom that caused me to ask my doctor to run the test).

I hadn't had B12 deficiency since before I was diagnosed with celiac sprue.  Once the G.I. put me on the gf diet for 6 months, my B12 (and beta carotene) levels all rose to above normal.  He told me that one doesn't have vitamin deficiencies for no reason and that it takes years to develop a deficiency.  My current doctor seems to think it's okay to have low B12 for no reason - he says it's common.  But when I ask him why the levels do not increase despite supplementation, he has no answer - hence my quest for a referral.  I have followed the gf diet religiously - only cross-contamination issues from time to time but I've never outright eaten anything containing gluten.  I am not a vegetarian.

Any insights you may have to offer will be appreciated.

Deb

* Visit the Celiac Web Page at www.enabling.org/ia/celiac/index.html *