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On Thursday, Sept. 18, there was a posting of an article and a letter
from The Healthy Villi newsletter concerning the chapter's ending of
their affiliation with CSA/USA. Both the newsletter and the posting did
not include Gary Powers letter of acknowledgment shown below for your
information.
Tom Sullivan
CSA Past President
Mrs. Lee Graham September 6,
2008
The Healthy Villi
225 School Master Lane
Dedham, MA 02026
Dear Lee,
The Executive Committee is in receipt of your letter of July 20, 2008
advising of your Board's decision to end the Chapter's affiliation with
CSA. Needless to say, we were disappointed that such a vibrant and
successful chapter as The Healthy Villi no longer finds its CSA
affiliation to be a positive, productive influence on its members.
We regret not having an earlier opportunity to properly address these
concerns with your Board. Please allow me to speak to some of these
issues.
As background, CSA developed and currently recommends a
Three-Step Process to Gluten-Free Diet Self Management. (See enclosed.) The
philosophy of this approach is consistent with that of the
physicians' creed "first, do no harm".
Step 1 outlines the fastest way to healing is by making risk-free food
choices with complete elimination during the first year after diagnosis
of products derived from, or cross-contaminated by, toxic grains or
their fractions with amino acid sequences high in serine, proline and
glutamine.
In Step 2 of the diet, the patient, with the advice of his/her
physician, reviews, introduces and evaluates any products, such as oats
or distilled products which include ingredients derived from grains
containing amino acid sequences and fractions thereof which could be
personally toxic. This recommendation, particularly with respect to
oats, is believed to be totally consistent with that of the clinicians
of the Celiac Center of Beth Israel Deaconess Medical Center.
Step 3 recognizes that management of celiac disease is a journey that
requires constant attention and recognition of newly developed,
science-based knowledge that will assist the individual celiac in making
informed personal decisions in his/her lifetime.
We believe that any conflicting information that may exist stems from a
difference in philosophy between CSA and others with respect to the impact on the
health of celiacs. Because there is limited "science" with respect to the
long-term health effects on celiacs when exposed to the toxic fractions of the
offending proteins, CSA has consistently taken the
position that there is no level of gluten that can be deemed "safe" i.e.
truly 100% risk-free for all celiacs. Hence, CSA's recommendation Step1,
strict avoidance, followed by Step 2, a gradual and controlled introduction of
products possibly containing offending protein fractions.
It is known that the celiac condition varies widely among celiacs, and
that continued consumption of so called gluten-free foods (that actually
contain gluten at any level) will, in fact, be detrimental to the health
of some celiacs. The FDA proposed threshold of 20 ppm for labeling a
product as "gluten-free" was arrived at in good part by the fact that
the ELISA test, the only currently FDA approved test for gluten, has 20
ppm as its lowest level of detectability. The FDA's proposed threshold
is not supported by adequate research. To date there has not been
sufficient research to determine and confirm the lowest threshold of
gluten that evokes an immune response at the cellular level in a person
with celiac disease.
While it may not be deemed as "speaking with one voice", CSA strongly
believes that a constructive discussion of differences is a healthy situation that
ultimately also serves to improve the health of all celiacs. We look forward
to continued collaboration with Healthy Villi and its members in advancing
the condition of celiacs everywhere.
Very truly yours,
Gary P. Powers
President
Celiac Sprue Association
30 Park Place
Easton, PA 18042
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