<<Disclaimer: Verify this information before applying it to your situation.>>

Thanks so very much to all who responded.  The responses were very
interesting and insightful (and if my questions had been more specific,
this survey might have given even more information).  47 people
responded!  I think Dr. Joseph Murray in Iowa (among a few other
doctors) will find this interesting for sure.

Out of 47 respondents, 40 were not tested, upon initial diagnosis with
Celiac Sprue, for Bone Density; 7 were tested (out of that 7 only two
were done at the suggestion/recommendation of the doctor-the other 5
were demanded by the patient).  This I found very disconcerting!!!  How
can you truly have a good benchmark and therefore more successful
research and understanding into CD and bone loss without doing bone
density testing at initial diagnosis?!!!!  The ages listed (at initial
diagnosis of Celiac Sprue) of the respondents varied from one 2-year-old
to one 64-year-old, with the largest amount occurring in the 40-49 year
bracket, followed by the next largest grouping in the 30-39 year
bracket.  I found it disturbing that still there seemed to be a lack of
bone density follow-up/monitoring being done among the respondents--30
are still being monitored in their bone density while 17 were not
continuing monitoring their bone density.  (Is this because of doctors'
unwillingness to monitor or the patient's feeling that this need not be
done?  Or could it be that in my survey I asked if ANNUAL monitoring was
being done and some replied no because their monitoring is done on a
less frequent basis than annually but still being monitored?)  The next
question regarding if the survey participants are currently taking
medications for improvement of bone density, the majority said no, but
15 reported some type of medication, mostly Fosamax and/or the nasal
spray.  As to the question regarding if respondents had had low calcium
at initial diagnosis many responded with a "no" and about as many
responded with a "yes," although a few respondents did not know whether
their calcium level was low at that time or not.  A few of the "no"
respondents were kind enough to share with me that although their
calcium levels were in the normal range (or low normal range), when the
bone density test was taken, they already had significant bone loss!!
As one respondent (thank you very much!) pointed out, it might be that a
calcium level will show in the normal range on a blood test while the
body is not ABSORBING enough calcium through food intake, but is getting
its needed calcium from the bones, therefore showing a normal level but
having bone loss at the same time.  Is this possible Dr. Murray?  An
overwhelming majority responded that they are currently taking calcium
supplements daily and/or making sure their food intakes contain calcium.
(For those interested, the range reported was anywhere from 370 mg per
day to as much as 2500 mg. per day, but most of the respondents falling
within the 1000-1200 mg. per day.  And most were taking calcium
supplements with Vitamin D.)  (This would have been more interesting if
I had been able to tell which respondents were female and which were
male to see if that had a significant difference in the supplement
intake per day--which I think it would.)

Hope this is informative to many of you and I greatly appreciate the
added information/personal experiences that were shared.  If anything,
it proves to me the necessity of getting the doctors out there to
realize the importance of properly benchmarking their CD patients, of
listening to their patients, and of our needs as patients to be up on
the CD information and insisting on the best medical care and
follow-up!  I am definitely following through with the bone density
testing, especially after reading what happened to those who found out
too late regarding their bone loss, and I will insist on monitoring it.
Thank you again everyone!  Stay strong!

Renee' in So. Florida