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Interesting stuff. Medical and scientific issues are certainly important

 

-Michael Thorn, RN

 

THE HEALTHY VILLI NEWSLETTER, Fall, 2008

 

The following letter was sent to the President of CSA/USA,  Gary Powers,
on behalf of the Board of the Healthy Villi, ending our affiliation with
CSA/USA, the first national support group for people with celiac disease
and dermatitis herpetiformis.  This was not an easy decision.  The Board
made this decision after careful consideration and a growing awareness
that some of the positions CSA/IUSA was taking and some of the
statements they were making were in contradiction to information we were
getting from recent medical research, other support groups, and advocacy
groups.  This letter details these differences.

 

When the Healthy Villi joined CSA in 1997, CSA was the dominant voice in
the dissemination of information about diagnosis, epidemiology, diet,
and treatment of celiac disease and dermatitis herpetiformis.  They were
there for so many of us who were newly diagnosed and didn't know where
to begin learning how to live a gluten-free life.  They were, as their
newsletter is titled, our "lifeline."  For this we are very grateful.


 

However, times have changed.  There are now five major national celiac
support groups in the U.S.  There are numerous publications geared
specifically to those with CD/DH as well as other health oriented
magazines that include issues about and ways of eating gluten free.
There has been a proliferation of research, a more in depth
understanding of the epidemiology of the illness, and lots of work on
making the public aware of CD/DH.  CSA is no longer the only voice.

 

We know that this newsletter reaches a broad audience. Many of you are
just becoming aware of the resources that are available to you.  Some of
you have joined only the Healthy Villi.  Others of you may  belong to
one or more of the support groups.  We recognize that whether you are
newly diagnosed or have been living with CD for a while, you are always
looking to make sure that you have the most up-to-date medical
information as well as information about wheat is safe to eat.  We know
that there is conflicting information out there.  The Healthy Villi
Board is committed to doing the work to bring you the most accurate and
up-to-0date information.

 

July 20th, 2008

 

Dear President Gary Powers,

                After careful consideration, the Board of the Healthy
Villi has voted to end our affiliation with CSA/USA.  Our two groups are
educating members with conflicting information.  This does a disservice
to both CSA/USA and the Healthy Villi.

                We joined CSA in 1997 when the Healthy Villi was young
and looking for the support of a national group.  Over the 15 years that
we have been in existence, basic and clinical research, as well as
national trends in treating celiac disease, have introduced changed in
the gluten-free diet.  For example:

 

*         Scientific evidence shows that distilled vinegar and distilled
alcoholic beverages,

regardless of the source grain, are safe choices in a GF diet.

*         Currently, the clinicians of the Celiac Center of Beth Israel
Deaconess Medical Center 

recommend avoiding consumption of oats for newly diagnosed patients, but
only until it can be

clearly demonstrated that celiac disease is well controlled.  After this
point, gradual addition of pure oats from a gluten-free facility may be
attempted under a physician's guidance.  Studies show that eating pure
oats can be advantageous for celiac as a way of addition fiber to their
diet.

*         Current scientific consensus is that a food product measured
to have less than 20 parts per million of gluten is suitable for the
gluten-free diet.

        

        The American Dietary Association, the Gluten Intolerance Group,
and the Celiac Disease Foundation speak with one voice.  They educate
people with celiac disease with the same consistent information.
CSA/USA takes a different stand.  We respect your right to make whatever
judgments you wish.  However, we, like major national organizations,
disagree with CSA/USA about some core GF diet recommendations.

 

        On a personal note, I want to make clear that we have no issue
with the wonderful people who work for and support CSA/USA.  We have
enjoyed getting to know you and your lovely wife Kathy, as well as Bill
Eyle and Cliff Hauck.  You are dedicated and generous people, and CSA is
lucky to have you.  Our major concern is with the information that is
being distributed to the celiac world.  We believe our decision is in
the best interest of Healthy Villi members.

 

        Thank you for your kind understanding.

 

Yours sincerely,

Lee Graham, Chair,  The Healthy Villi

 


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