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Sat, 22 Aug 1998 11:56:57 -0700
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<<Disclaimer: Verify this information before applying it to your situation.>>

In the past Gayle Kennedy has raised issue with regard to CSA's position
regarding grains.

I understand her frustrations with certain edicts from CSA/USA regarding
some grains and other questionable items.  The following comments are my
view of this situation.  CSA/USA Executive Director and the medical
advisors believe in the conservative approach; i.e., the safety of the
most sensitive celiac, especially those who are quite new to a
gluten-free diet and know little.  (I believe Gluten Intolerance Group
of Seattle also subscribes to the same basic philosophy.) You and I know
there are stages of celiac damage and different levels of sensitivity to
gluten.  We also know that even small amounts of gliadin do damage in
the small intestine, even without overt symptoms.

It seems there are some grains that are questionable as to gluten
content; i.e., buckwheat, amaranth and quinoa. A well-known cereal
chemist believes these grains are not biologically close to those
containing gluten.  I would like to see some explanation given by CSA
rather than a blanket statement; however, be that as it may, these
grains could be suspect due to cross contamination. The likelihood of
cross contamination with quinoa is much less.  However, remember that
many celiacs tend to have individual sensitivities. Unfortunately, there
are no "absolutes" in the gluten-free world.

The celiac community in general is pretty well educated about the
disease and diet issues.  We have the right to decide for ourselves what
route we personally should take, living in the real world.  I believe it
is our own responsibility to avoid every bit of gluten we know about
because we are still getting gluten in unknown amounts hidden in some
products. I believe the keys to coping with CD are education about the
disease and diet and learning to plan in advance.

I am sorry you want to blame a good organization that has the welfare of
all celiacs at heart. Isn't it wonderful that you can choose how to
follow a gluten-free diet using many resources available?

I would recommend attending a national celiac conference, like CSA's in
Rhode Island on Halloween weekend this year, to see for yourself the
many viewpoints of other doctors.

Sincerely, Janet Rinehart in Houston, CSA/USA President

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