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             Report from Digestive Disease Week, 1996<8>
             -------------------------------------------
                            by Ann Whelan
               editor/publisher of Gluten-Free Living

Digestive Disease Week (DDW) is the world's largest assembly of
gastroenterologists and related specialists.  [In 1996] DDW was held
in May in San Francisco.  Over 12,000 physicians and researchers from
all over the globe gathered to learn more about their specialty,
network with colleagues, and review the very latest equipment and
products.  The annual event is sponsored by the American
Gastroenterological Association, The American Society for
Gastrointestinal Endoscopy, The American Association for the Study of
Liver Diseases, and the Society for Surgery of the Alimentary Tract.

In the main exhibit hall, company representatives explained what their
latest equipment, medications, and ancillary products do and the ways
in which they might improve clinical practice and research.  The
exhibits ranged in size from huge displays of high-tech equipment to
much smaller specialized food displays like those of our very own
Dietary Specialties and EnerG Food.

One section of the exhibit hall was devoted to nonprofit organizations
and included groups such as the Crohn's & Colitis Foundation of
America and the American Digestive Health Foundation.  The Celiac
Disease Foundation (CDF) and the Gluten Intolerance Group of North
America (GIG) represented Celiac Disease (CD), as they have for
several years.  I had been invited by Elaine Monarch, founder and
Executive Director of CDF, to join her in speaking to physicians.

Questions are answered
----------------------
Elaine Monarch, CDF board member Elizabeth Purko, and I answered
questions, provided literature, and talked nonstop.  We offered to
send more information.  We repeated the same things we people with CD
always do:  Look for us.  We're out there and we need you.  These are
our symptoms.  These are our problems.  Ever politely and tenaciously,
we did what we could to put CD on their personal gastrointestinal map.

We encouraged them to attend the clinical symposium on Celiac Disease
that was included in the week's curriculum.  Initially conceived by
Elaine Monarch, coordinated by CDF Medical Advisor Martin Kagnoff,
M.D., and sponsored by the American Gastroenterological Association,
the afternoon symposium featured three celiac experts:  Dr. Kagnoff,
Paul Ciclitira, M.D., and Michael Marsh, D.Sc., M.D.

In the past years at DDW, Monarch said, the physicians had not been as
receptive to information about Celiac Disease as she would have liked.
Most involved in planning this year's symposium were extremely pleased
by the response.  The posted sign said the room held 340 people.  All
seats were filled and listeners lined the aisles and crowded into the
back.

Dr. Kagnoff, a prominent researcher who is Professor of Medicine at
the University of California, San Diego, served as moderator and set
the stage by detailing what is known and not known about the process
that activates CD in susceptible individuals.  He was followed by Dr.
Paul Ciclitira.

Dr. Ciclitira is a London gastroenterologist.  Early in his talk he
noted how the incidence of CD keeps changing because of accurate
serological screening tests.  "I've been advised that in this country
it's recently been revised from 1 in 6,000 to 1 in 3,000," he said.
"Therefore you're talking about 150,000 people with CD.  And it's my
opinion that there are an awful lot of patients out there who are not
diagnosed.  In Europe, the figures again keep changing, but in general
they're in the order of 1 in 1,000."

More striking still, Dr. Ciclitira added:  "It's known in Galway and
in some areas of Ireland that it's 1 in 300 of the population, and in
fact it's the most common reason for admission to a medical bed in
Galway Hospital."

Testing family members
----------------------
Dr. Ciclitira said that more and more commonly he sees patients
presenting in the later age groups.  Like Dr. Marsh, who followed, he
was adamant not only about the necessity for physicians to be aware of
the possibility of CD with certain presentations, but also about the
necessity for testing and treating the family members of celiac
patients.

"In my experience, first-degree relatives of patients with Celiac
Disease have approximately a 15 percent chance of having the same
condition," Dr. Ciclitira said.  "If the members of a family with CD
have unexplained symptoms that have gone on for many years, and they
can be either psychiatric or gastrointestinal, that figure in my
experience rises to 50 percent.  Therefore it becomes even mandatory
to actually consider the diagnosis if you've got a family history with
CD, and often these people present with mild psychiatric
abnormalities."

Dr. Ciclitira also noted other diseases in which Celiac Disease can
be a simultaneous problem:

  *  Insulin Dependent Diabetes Mellitus:  "The papers here show eight
     percent have concurrent CD and in my opinion, it warrants
     serological screening."

  *  Thyroid Disease:  "Six to eight percent of patients with Graves
     Disease have CD."

  *  Down Syndrome:  "The latest publication is that between 20 and 30
     percent of children with Down Syndrome have gluten sensitive
     enteropathy."

And, of course, he warned the doctors present of the danger of
lymphoma from untreated Celiac Disease:  "In my experience, in
untreated CD, approximately 10 to 20 percent of patients potentially
go on to a T-cell lymphoma.  This is important because these patients
often present to your surgical colleagues at four in the morning with
an unexplained perforation of the small intestine."

CD treatment is discussed
-------------------------
Dr. Michael Marsh, author of _Coeliac Disease_ (Blackwell Publishers,
1992), then discussed CD treatment.  He divided his talk into four
patient categories:  conventional, latent-compensated, slow
responders, and refractory.

First, the British physician encouraged the doctors to be positive
about the diet after they diagnose CD and to "emphasize the things
that can be eaten rather than the things that can't."  He said he's
come across patients who are afraid of eating anything or who lose
weight because they don't understand the diet.

Dr. Marsh also recommended making sure nutrients are restored,
particularly iron, folate, calcium, and vitamin D.  He underlined the
importance of the latter nutrients by saying, "There's no doubt that
an adult, particularly with latent CD, may be very predisposed to bone
disease."

Moving on to what he called "latent-compensated disease," meaning
those patients "who are gluten sensitized but who may not have
clinical developments (symptoms), depending on the degree of mucosal
injury," Dr. Marsh encouraged the physicians to be aware of the
family incidence of CD and of the fact that some family members may
have significant intestinal damage but be completely asymptomatic.

Astoundingly, he said that the overall prevalence of disease in family
members is about 11 percent but "consistently 50 percent of those
relatives (the 11% who are sensitized to gluten) with a flat mucosa
are asymptomatic.  This proves that to have a flat mucosa you don't
need to have symptoms at all and, in fact, if those people had not
been biopsied, they would have considered themselves not to have
gluten sensitivity."

This latent-compensated state is important to recognize because of the
"great predisposition to malignancy in untreated gluten sensitivity."
Dr. Marsh reported an increased incidence of cancer of the esophagus,
brain, and bladder in males and of breast cancer in females.  "In many
people who have presented with malignancy," he said, "the proximal
mucosa has been normal so we can't rely on the proximal mucosa.  This
is where other factors may be important, such as endomysial screening
and looking elsewhere in the intestine."

Dr. Marsh urged the physicians to "work up" patients presenting with
malignancy for Celiac Disease in order to assemble a body of
epidemiological evidence.  "How many people with lymphomas who present
to oncology do in fact have a gluten sensitive form of disease?"  he
asked rhetorically.  "Here we need a jejunal biopsy and we need to
look for gamma delta cells and endomysial cells and do a gluten
challenge either by jejunal or rectal challenge."

Dr. Marsh called his next patient category, the slow responder, very
important because he believes that most will, in fact, eventually
respond if they are "carefully looked at."  He urged the physicians to
check the slow responder's diet, antigliadin antibodies, and nutrient
levels and to look for ancillary disease such as pancreatic problems
or intestinal overgrowth.  He also recommended a visit to an
experienced dietitian.

It was with his fourth category where Dr. Marsh's advice was
discouraging.  This very small group of refractory patients usually
presents above age 50 with persistent, unremittant diarrhea.  "I think
refractory disease is no longer gluten dependent," he said.  "It seems
to be a process that is now totally independent of gluten
sensitivity...It's very difficult to know how to treat these kinds of
patients."

Time ran out, so the question-and-answer session following the three
talks was very limited.  As celiac patients, we can only take heart
from the interest this gathering seemed to indicate and hope it
continues, especially here in the United States.

[Ann Whelan is the publisher of the bimonthly newsletter _Gluten-Free
Living_.  Subscriptions are $29 for one year, $49 for two years.
Outside the USA add $5.  Write to Gluten-Free Living, PO Box 105,
Hastings-on-Hudson, NY 10706.  I have found this newsletter to be
well-written, informative, and worth the price of the subscription.  I
highly recommend it.--editor]