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There were a number of queries so I took the time to transcribe remarks that
got a great deal of attention during and after the NIH Consensus Conference
on Celiac Disease in Bethesda. I am not a transcriptionist but I did my
best. I apologize in advance for any errors.

It does seems appropriate to have people speak in their own words rather
than let memory serve as our guide.

The material is from very close to the end of the session on the third day
as the draft consensus document was being reviewed and commented upon one
section at a time.

Tom Sullivan (current President-Elect of CSA/USA) was at the microphone. I
have left out his initial remarks  regarding the amount of gluten that could
cause harm to a person with CD.

He then referred to particular sections in the original draft document. This
is not the one currently available as it was revised after comments from
those gathered. He specifically commented on the following sections:
p 14, lines 19- 20 of the first draft consensus statement..
Adoption of a standard definition of a gluten-free diet based on objective
evidence such as that being developed by the American Dietetic Association.
p 15, lines 3-5
Formation of a federation of celiac disease societies, celiac disease
interest groups,  individuals with celiac disease and their families,
physicians, dietitians, and other  health care providers for the advancement
of education, research, and advocacy for individuals with celiac disease.

quote-
"...Second one which I think needs addressing is the 19 and 20 on 14 and 3
through 5 on 15. I know have been statements made politically. I do not
believe that any evidence has been presented to you that would make those
two conclusions anything but a political statement, not an evidence-based
conclusion on their impact, effect and  health on the disease and  the
patients. It may help the doctors, it may help communication but I am not
sure that your charge and your conclusions support those political
statements. To follow-up what was said previously I can document for you if
you wish the efforts made by Celic Sprue Association as the largest patient
support group in North America to provide you with information to coordinate
among all celiac support groups in the United States to gather groups
together to make this effective that have been rebuffed both privately and
publicly deliberately by other organizations. So whatever conclusion you
have reached, whatever statements have been made to you that indicate that
the largest Celiac Sprue association in North America is opposed to
cooperation, coordination and acceptance of this communication problem is
absolutely flat-out false and wrong. Thank you."{transcriptionist note: dead
silence followed}

Dr. Alessio Fasano approached the microphone to respond.
He initially commented on the research available that discusses the amount
of gluten that causes damage.
He then turned his attention to the comments made by Mr. Sullivan.

quote
" .........and in terms of the second comment I want to just follow-up with
what the chair just said that I think is very very appropriate. The dilution
of effort that has been a travesty of this community and is  no-brainer that
needs work together. I have a great respect for the support groups of celiac
disease in the United States but since we have to talk about facts, let's
talk about the facts. Only in one year the community moved up because we
were absolutely tired of the lack of effort toward an orphan situation. The
{American} Celiac Task Force is a completely {applause}, let me finish, is a
completely volunteer operation  of support groups, physicians, media,
industry that care about the problem  in only one year obtained much more
than what has been obtained since the inception of all the combined support
groups, one year. Suggesting that your recommendation, is such a no-brainer
that we should not waste your  precious time and the panel's precious time.
Thank you so much. {applause}"

Words in {} are my additions for slight clarification and to my
recollection.

This exchange may be viewed online as video with closed captioning at
http://videocast.nih.gov/PastEvents.asp?c=998)
Just scroll down to NIH Consensus Development Conference on Celiac Disease
(Day 3).

-Michael Thorn

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