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I am pleased to pass on a report from the NIH meeting, written by
Ann Whalen.  Ann is the editor and publisher of "Gluten-Free Living",
a fine bi-monthly newsletter for celiacs that has been mentioned on
this list many times before.  ($29 for one year/6 issues, write to
Gluten-Free Living, PO Box 105, Hastings-on-Hudson, NY  10706.  My
only connection is that of a satisfied subscriber to the newsletter.)
Our thanks go to Ann for providing us with this report.
                                ----- For the listowners, -----
                                -- Jim Lyles, Holly, MI, USA --

Here is Ann's report on the NIH meeting:

On March 10th, more than 20 members of the celiac community and CD
specialists (see list at end) attended a meeting of the Digestive
Diseases Intragency Coordinating Committee, a part of the National
Institute of Diabetes and Digestive and Kidney Diseases (NIDDK).
     The meeting, held to update the current status of Celiac Disease,
was chaired by Jay Hoofnagle, M.D., Director of the Division of
Digestive Diseases and Nutrition at the NIDDK. At the meeting,
presentations were made by Martin Kagnoff, M.D., Joseph Murray, M.D.,
Alessio Fasano, M.D., and Frank Hamilton, M.D.
     Dr. Kagnoff is a gastroenterologist and Professor of Medicine at
the University of California, San Diego. He spoke about his research
into the genetics of Celiac Disease, focusing on the pathogenesis. Dr.
Kagnoff is well known for his research into the genetics of Celiac
Disease, and several of his studies have been funded by the NIH.
     Dr. Murray, Associate Professor of Medicine and clinician at the
University of Iowa Hospitals and Clinics, described his experience
with Celiac Disease both in Iowa and in Ireland, noting that his
interest in CD is clinical. He emphasized what he called the "Classic
II" symptoms, meaning the actual symptoms patients have today and not
the "Classic" symptoms many doctors may be familiar with. He said "the
rate of diagnosis is proportional to suspicion."
     Dr. Murray described the CD experience at the University of Iowa
from 1985 to 1997, presenting statistics that indicated a steep
increase in diagnosis. "At our institution, Celiac Disease is an adult
disease," he said, "and is now seen as frequently as Crohn's Disease."
     Anticipating the question, "Why look for Celiac Disease?", Dr.
Murray gave his reasons: preventing lymphoma and osteoporosis, as well
as resolving fatigue and nonspecific symptoms and shortening the
current significant delays in diagnosis.
     Dr. Fasano's presentation was called "Where Have All the American
Celiacs Gone?" He described what has happened in the field of CD in
various parts of the world, including some parts of the United States,
but emphasized the European experience. Dr. Fasano noted that plans
are already underway in Italy to screen all seven-year-olds in 1999.
     Dr. Fasano explained why an epidemiology study is critically
needed in this country. He pointed out the benefits of such a study
for four groups:
     o  The American health care community: lower health care costs,
increased awareness of CD and more knowledge of its "protean
manifestations in the U.S.
     o  Participating physicians: publications, more patients and
increased credibility.
     o  The American people: the prevalence will be established and
CD will be diagnosed more quickly.
     o  Celiac Patients: free screening of first-degree relatives,
federal support for dietary and drug regulations, an improved food
supply, stronger local support groups and more funding for celiac
research.
     Dr. Fasano added that such a study, whatever its findings, would
end in a win-win situation for everyone. If the study shows that CD is
underestimated in this country, patients will benefit as physicians
begin looking for the problem with the knowledge that they might well
find it. If the study shows CD is indeed rare in the United States,
"it's even more exciting because we will be able to figure out why."
     Dr. Hamilton, chief of the Digestive Diseases Program Branch at
the NIDDK, briefly described the CD research, to date, that has
already been funded by the NIH. He said $1.4 million has
been granted for such research, adding that over the last five years,
"we have seen growth in the funding of Celiac Disease." He said he was
pleased funding has increased, and felt a lot of work has to be done.
     Dr. Hamilton ended by saying, "Today's meeting will serve as an
impetus for a partnership between the National Institutes of Health,
academe, and the lay groups to foster more research." He added that it
was important for the investigators and support group representatives
present at the meeting to get the word out, referring to information
about Celiac Disease.
     These talks were followed by a round table discussion, between
the members of the committee and the presenters. Later, audience
comment was invited. The committee showed an interest in the current
adult nature of the disease, the changing symptoms, current testing
methods, and identification of the most critical research needs.
Patients who spoke were anxious to let the committee know what they
felt were the important concerns in the real world.
     At the end of the meeting, Dr. Hoofnagle said his division will
prepare a short, pithy plan, then present it to Drs. Kagnoff, Murray
and Fasano. He noted that the important issues are pathogenesis,
delivering the message to physicians, clinical research issues and
pediatric health concern.

Some Quotes from the Meeting

Elaine Monarch: There is a general lack of knowledge, awareness and
interest in Celiac Disease among the medical profession. We celiacs
can go for years with substantial symptoms but not diagnosis...The
cost to the medical community is enormous.

Joseph Murray, M.D.: There is more than one gene involved in Celiac
Disease. Most Europeans are homogenous. Here we have a mongrelized
population. What happens when you mix? How much does it change? Our
mongrelized population may be at risk at a later age.

Martin Kagnoff, M.D.:  "The issue of other genes is not at all clear.
Like Joe (Dr. Murray), I see adult celiacs. Their time delay to
diagnosis is not exaggerated, but what is striking is the lack of
knowledge of doctors, even at the University of California. They
really are not aware of this disease.

Alessio Fasano, M.D.: We receive 10-15 calls a day. The vast majority
are self diagnosed. They say, "I know more than my
gastroenterologist."

Peter Green, M.D.: We need to emphasize education of
gastroenterologists. At my institution (Columbia-Presbyterian Medical
Center in New York City), doctors are not used to looking at the
duodenum...We need to educate many levels of the medical community and
tell them, "If you don't recognize something, take a biopsy."

Sue Goldstein: I'm concerned about the people who have not yet been
diagnosed and the reasons why a physician won't consider Celiac
Disease. It all boils down to, "it's rare and you can't have it."

In addition to the speakers, the following were among those who
attended:

Phyllis Brogden, celiac, founder and chairperson of the Greater
Philadelphia Celiac Sprue Support Group.

Winnie Feldman, celiac, Celiac Disease Foundation

Kenneth Fine, M.D., gastroenterologist/ researcher at Baylor
University Medical Center in Dallas.

Al Fornace, M.D., celiac, National Cancer Institute

Sue Goldstein, celiac, founder and advisor, Westchester Celiac Sprue
Support Group

Peter Green, M.D., clinician/researcher at Columbia-Presbyterian
Medical Center in New York City.

Joanne Hameister, celiac, former chairperson, Western New York Gluten-
Free Support Group

Ivor Hill, M.D., clinician/researcher at Bowman Gray School of
Medicine, Winston-Salem, North Carolina.

Beth Hillson, celiac and proprietor of the Gluten-Free Pantry.

Karoly Horvath, M.D., clinician/researcher at the University of
Maryland School of Medicine in Baltimore.

Marge Johanamen, celiac, CSA Kentucky state coordinator

Pam King, University of Maryland

Bob Levy, Celiac Research Foundation

Ruth Levy, spouse

Jax Lowell, celiac and author of Against the Grain

Elaine Monarch, celiac, founder and Executive Director of the Celiac
Disease Foundation

Selwyn J. Monarch, Board of Directors, CDF

Diane Paley, celiac, governing board CSA/USA

Michelle Pietzak, M.D., pediatric gastroenterologist at Children's
Hospital, Los Angeles

Connie Tur, celiac, president Greater Louisville Celiac Sprue Support
Group

Ann Whelan, celiac, editor/publisher of Gluten-Free Living