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Dear List Members:
Here is the third - and hopefully(!) final summary on osteopenia.  My
questions last Friday led to an extremely large volume of responses.  All
educational and enlightening.  It seems to me that for some women celiacs
there could be a link between the celiac/osteo./hormonal status'.
Certainly a fascinating and perhaps logical connection?  I find it
ironic/coincidental that I'm doing this inquiry search during "Women's
History Month". Thanks again for all of your help and let me know if  I
didn't get 1 or 2 out to you as requested. -Laurie

***I was diagnosed with this about two years ago (I understand that it
is a precursor to the real thing - Osteoporosis.)  Since then, I have been
diagnosed with DH. I've been researching all of this and have noticed the
seeming link between Osteoporosis and Celiac.  I had three broken arms as a
child and broke my wrist again, exactly a year ago.  I don't have the
strongest bones in the world even though I've always consumed great amounts
of calcium and exercised regularly.  (Imagine where I'd be if I didn't do
these two things!!!)

***When I was first treated at the Cleveland Clinic (around
1980), they said my bones were opaque and said I would need long bone
x-rays
every six months.  After grueling Vitamin D injections and magnesium
infusions, my bones again showed up on the x-rays.

***I was diagnosed with osteoporosis a couple of years ago (which just means
that my bones are in worse shape than yours) and was just diagnosed with
celiac disease a few weeks ago.  I am also 39 and postmenopausal.  I would
strongly suggest that you see an endocrinologist to help you manage your
low bone density.  That is the route I'm taking and I've learned alot.  I'm
grateful that my endocrinologist didn't put me on Fosomax - he knew I
wasn't absorbing calcium (although didn't know why at the time), so I more
than likely wouldn't absorb the Fosomax either.  He put me on vitamin D
supplements (prescription) to improve my calcium absorption. It's working,
absorption is better and bone density has improved - although I still have
a long way to go and it takes a long time to see results.  Hopefully, now
with the CD diagnosis, my absorption will improve even more - I'm hoping to
be able to reduce the Vitamin D supplements and gradually work toward a
more "normal" level.
One very important thing I've learned that I would like to share with you
is that GYNs and General practitioners/Internists don't understand the
scope of the problem and would tend to treat this in a "cookbook" fashion -
this means just prescribing a drug, like Fosomax, instead of investigating
the problem on a more physiologic level.  This requires checking calcium
levels in your blood and urine - and other hormone levels as well - to see
what your body is doing.  This is what an endocrinologist's job is all
about.

***Fosomax is gf.  I called the manufacturer.  However, even though I took it
per directions, after 3 months, I had a terrible return of GERD, enough that
I ended up with an echo-cardiogram for breathlessness & pain, also full exam
and blood tests, resulting in having to go on Prevacid for a few weeks, to
calm my stomach down.  My non-celiac friend also found she had a 3 month
tolerance and had to stop, wait, start, stop, etc.  I am also on Prempro
(hormones).  My primary doc was not in agreement with the OB-gyn who, indeed,
is very pro- hormone (even though my mom just had breast cancer) and very
pro-Fosomax.  Be sure you get tested for Vitamin D.  You can take all the
calcium you want.  If your body isn't processing D, the calcium won't be
absorbed.  Also check into how much magnesium you need for calcium
processing.  I will say that after 1 yr of Prempro and calcium supplements,
my osteoporosis became osteopenia (improving.)  Primary doc also indicated
there are alternatives to Fosomax that do not cause inflamation.  OB-gyn
isn't sure they make bones that are break- resistant.  Good luck.  Don't
forget to exercise (weight-bearing...even walking.)

***I am currently taking the Fosomax.  When I first tried it I had some
trouble with my system tolerating it so the doctor switched me to a
different medication--the miacalcin nasal spray--but I got bad nosebleeds
from that!  I went to see another doctor and he suggested that I try
adjusting my system gradually to the Fosomax.  So I took a smaller ( 5
mg) dose for a couple of weeks, and when I had no problems with that then
I started taking the regular (10 mg) dose.  That was last March and I am
still taking it with no problems.  Be sure to drink a large glass of
water with the pill, and don't eat or drink anything else for 30 minutes
( also stay upright for that time).
I am also using the progesterone cream.  I really don't notice a big
difference with it, but just hope it is helping in some way.