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NIH Meeting on Celiac Disease Held
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by Ann Whelan, editor/publisher of Gluten-Free Living
reprinted from the April 1998 newsletter of the
Westchester Celiac Sprue Support Group, White Plains, NY
On March 10th, more than 20 members of the celiac community and celiac
disease (CD) specialists 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 CD, was chaired by
Jay Hoofnagle, MD, Director of the Division of Digestive Diseases and
Nutrition at the NIDDK. At the meeting, presentations were made by
Martin Kagnoff, MD, Joseph Murray, MD, Alessio Fasano, MD, and Frank
Hamilton, MD.
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 CD, focusing on the pathogenesis. Dr. Kagnoff is
well known for his research into the genetics of CD, and several of
his studies have been funded by the National Institute of Health
(NIH).
Dr. Murray, Associate Professor of Medicine and clinician at the
University of Iowa Hospitals and Clinics, described his experience
with CD 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 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, CD is an adult disease," he said,
"and is now seen as frequently as Crohn's Disease."
Anticipating the question, "Why look for CD?", 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:
* The American health care community: lower health care costs,
increased awareness of CD, and more knowledge of its "protean
manifestations in the US".
* Participating physicians: publications, more patients, and
increased credibility.
* The American people: the prevalence will be established and CD
will be diagnosed more quickly.
* Celiac patients: free screening of first-degree relatives,
federal support for dietary and drug regulations, an improved
food supply, stronger local supports 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 CD." 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 NIH, 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 CD.
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 CD 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, MD: "There is more than one gene involved in CD.
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, MD: "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, MD: "We receive 10-15 calls a day. The vast
majority are self-diagnosed. They say, 'I know more than my
gastroenterologist.'"
* Peter Green, MD: "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 CD.
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 [Los Angeles].
Kenneth Fine, MD, gastroenterologist/ researcher at Baylor
University Medical Center in Dallas.
Al Fornace, MD, celiac, National Cancer Institute.
Sue Goldstein, celiac, founder, and advisor, Westchester Celiac
Sprue Support Group.
Peter Green, MD, 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, MD, clinician/researcher at Bowman Gray School of
Medicine, Winston-Salem, North Carolina.
Beth Hillson, celiac and proprietor of the Gluten-Free Pantry.
Karoly Horvath, MD, clinician/researcher at the University of
Maryland School of Medicine in Baltimore.
Marge Johanneman, celiac, CSA Kentucky state coordinator.
Pam King, University of Maryland.
Bob Levy, celiac in the Washington, DC area, and 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, Celiac Disease Foundation.
Diane Paley, celiac, governing board of CSA/USA.
Michelle Pietzak, MD, pediatric gastroenterologist at Children's
Hospital, Los Angeles.
Connie Tur, celiac, president of Greater Louisville Celiac Sprue
Support Group.
Ann Whelan, celiac and editor/publisher of Gluten-Free Living.
[_Gluten-Free Living_ is a national newsletter published to provide
help and information for those with CD or Dermatitis Herpetiformis and
the professionals who treat them. Subscriptions are $29 for one year
and $49 for two years. Write to Gluten-Free Living, PO Box 105,
Hastings-on-Hudson, New York, NY 10706.]
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