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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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