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From:
Adam Schroeder <[log in to unmask]>
Reply To:
Adam Schroeder <[log in to unmask]>
Date:
Thu, 8 Sep 2005 17:56:59 -0400
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<<Disclaimer: Verify this information before applying it to your situation.>>

First I would like to thank everyone for all the responses and apoligize to
those who I didn't respond personally to.  I received over 100 response to
it has taken me a while to sort through them all, and combine them with my
own research.

Personally, I have decided to give diet, calcium, and supplements another
year before starting to take Actonel, Fosamax or other Bisphosphonates.

I've condensed the summary as much as possible, focusing more on web sites
and research less on personal comments.

Most studies show people gaining some bone density after going gluten free
and taking calcium supplements.  The biggest increase is usually in the
first year, although further increases occur in the following years.  Even
after going GF for a long time the bone density of Celiacs was significantly
lower than the control group (non celiacs).  However it was much better then
Celiacs that did not go on the GF diet.

Specific Sources of information:
http://courses.washington.edu/bonephys/sprue/sprue.html - This is great
information specifically dealing with Celiac and Osteoporosis.  If you click
on the "Reference" button at the bottom there are over 30 studies listed of
varying applicability.  The rest of Dr Otts site
(http://courses.washington.edu/bonephys/) has incredibly useful information
as well.  This is likely the definitive place to look for information on
Celiac and Osteoporosis.

http://www.celiac.com/st_main.html?p_catid=80&sid=91hH9H1FYJj12Xf-35105059600.e7 -
A few studies listed on Celiac.com.  You will probably have to copy the
entire link and paste it into your browser.  Or you can search for
Osteoporosis on the site.

Information from Dr. Mercola
http://www.mercola.com/  (Search for Celiac.  Has links to a many studies
and his comments on them).

Osteoporosis and Men
http://www.fda.gov/fdac/features/2002/502_men.html

More general information:
http://www.betterbones.com/

Calcium:
Many people said to take calcium citrate vs. carbonate.  Also several
specific supplements were recommended.
Tri-Boron plus was the most recommended.  Dr. Ott has a great page on her
website on Calcium supplements.

Other supplements (research thoroughly before trying):
www.tahoma-clinic.com. Look into "strontium"

Information on Ipriflavone (research thoroughly before trying):
http://www.gianteagle.com/healthnotes/Supp/Ipriflavone.htm
http://www.betterbones.com/research/articles/ipriflavone.pdf#search='Ipriflavone'
http://www.thorne.com/altmedrev/fulltext/flavone4-1.html
http://healthinfo.healthgate.com/GetContent.aspx?token=e0498803-7f62-4563-8d47-5fe33da65dd4&chunkiid=21776

Information on Vitamin B12
http://www.umm.edu/altmed/ConsSupplements/VitaminB12Cobalamincs.html  -
scroll down to Osteoporosis


Heard from a lot of people to make sure my Thyroid is working properly.
They say there is a link between Celiac and hyperthyroidism.

Heard to make sure I get enough phosphorus.  Like "Solgar's bone meal
powder".

Interesting bit about how effective Fosamax is to reduce hip fractures:
http://www.gilliansanson.com/articles/bisphosphonates.htm

Concern over long term use of Alendronate
http://jcem.endojournals.org/cgi/content/abstract/90/3/1294
http://query.nytimes.com/gst/health/article-page.html?res=9B00E0DB1031F936A35754C0A9639C8B63
http://www.nytimes.com/2005/07/05/health/05brod.html

Many people wrote to say that they improved bone densisity going GF.  Some
said it took more than one year.  Many needed to do weight bearing exercises
and be GF before seeing an improvement.  Others needed to be GF and taking
Fosamax (or other drug).  Some needed to be GF, exercise, and take the drugs
to notice an improvement.  And a few didn't see any improvement even after
all 3 three.

I received a great "letter" from two different people.  I was unable to find
the source on the web:
#  WHAT ABOUT USING THE SPECIAL DRUGS FOR OSTEOPOROSIS?
DRUG THERAPY FOR OSTEOPOROSIS From Celiac Disease Center at Columbia
University
      We get many questions about the management of osteoporosis, especially
whether patients should be placed on agents that act on the bones as
anti-resorption agents such as Fosamax. We have advocated that patients with
reduced bone density, and celiac disease, be treated by the use of calcium
supplements and a gluten-free diet. Only if the bone density does not
improve, and calcium absorption normalizes, would we advocate use of these
drugs. Bone density usually improves on this regime.
      A patient sent us information that they received from the manufacturer
of Fosamax, Merck & Co. We also checked with Merck. We received information
concerning FOSAMAX (alendronate sodium) tablets and oral solution. Their
information states that FOSAMAX is not indicated for the treatment of
osteoporosis secondary to Crohn's disease, inflammatory bowel disease,
celiac disease or malabsorption syndromes.
      Here is what we advise. Serum calcium (the calcium in the blood) is
maintained carefully for heart and muscle function by absorption from the
gut, and from resorption from the bones. In the setting of active celiac
disease and poor absorption of calcium, due to malabsorption, the bones are
providing the main source of the serum calcium. The addition of a medication
blocking bone resorption can result in a fall in serum calcium. Therefore,
we advise that osteoporosis, in patients with celiac disease, be initially
treated with a gluten-free diet and adequate oral calcium. This should be
for at least a year. Then a repeat of the bone mineral density can be
performed. If necessary, Fosamax can be added if there is adequate calcium
absorption. Calcium absorption is usually assessed by a 24 hour urinary
calcium test.
      We have seen many patients with both celiac disease and osteoporosis
that are doing well on drugs that include Fosamax and similar drugs.
However, caution should be used if they are administered early in the course
of celiac disease.
      This information should not replace information provided from your
physician who has detailed knowledge of individual patient's care.

*Support summarization of posts, reply to the SENDER not the Celiac List *

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