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            Tenth Annual Gluten Free Gang Celiac Workshop
            ---------------------------------------------

This report contains some highlights from the Tenth Anniversary Celiac
Workshop, held in November at Children's Hospital, in Columbus, Ohio.
Several members of the group contributed to this report.  Tom and
Carolyn Sullivan did the lion's share of the writing, but there were
also contributions from Mary Guerriero, Sue Gentilia, and Jim Lyles.


Gluten Free Gang--Growing Strong Over the Past Ten Years
--------------------------------------------------------

The conference was opened by Mary Kay Sharrett (MS, RD, LD) with a
retrospective look at the progress of their support group, the Gluten
Free Gang.  It began in 1988, after the CSA conference in Cleveland.
From the 20-30 parents at their first meeting in 1988, they have
expanded to more than 200 attendees at the 1998 conference.  Keynote
speakers in the past have included Sandra Leonard [proprietress of
"Gluten-Free Baker", a quarterly newsletter published in Dayton,
Ohio]; Elaine Hartsook [founder of the GIG of North America,
headquartered in Seattle]; Bette Hagman [author of the _Gluten-Free
Gourmet_ cookbook series]; Jax Peters Lowell [author of _Against the
Grain_, a witty look at coping with celiac disease]; Dr. Joseph
Murray [well-known gastroenterologist from the Mayo Clinic, formerly
at the University of Iowa]; and this year, Dr. Alessio Fasano
[pediatric gastroenterologist from the University of Maryland, and
co-director of a study to determine the prevalence of celiac disease
in the United States].  In Children's Hospital, the group has
received support from, among others, Dr. B Li, who was also the first
keynote speaker; Marcia Rehmar and the Education Department, Steve
Plogsted in the Pharmacy Department; and dietitian Mary Kay Sharrett.

Mary Kay has seen many changes in the last ten years.  More people and
physicians are aware of celiac disease (CD) today.  There are better
non-invasive screening and monitoring tools available.  The
complications and autoimmune relationship of the disease are known.
There are better publications available including the three Bette
Hagman books, Jax Peters Lowell's book, Ann Whelan's "Gluten Free
Living" newsletter, the new magazine "Sully's Living Without", and
Sandra Leonard's newsletter.  There are more companies selling gluten
free (GF) products and more stores stocking GF products.  Food
labeling information is better.  There are more support groups, more
support group meetings, more newsletters, and more conferences.  And
of course there is the internet.  While things are not perfect and can
always get better, the past ten years have definitely seen proactive,
better-educated patients and thus better-educated medical
professionals.


Celiac Disease--Now and the Future
----------------------------------

Dr. Fasano gave the keynote address.  He gave us this definition:
Celiac disease, also known as gluten-sensitive enteropathy, is a
permanent condition in which intestinal damage is induced by specific
proteins (prolamines) in subjects with a genetic predisposition for
the disease.

Dr. Fasano focused on this question:  "Where have all the American
celiacs gone?"  He still recalls his shock five years ago when he came
from Italy, where celiac disease is very common and diagnosed
routinely, to the U.S.  to find that celiac disease didn't seem to
exist here.  The only form of celiac disease widely recognized in the
U.S.  at that time was the classical presentation; occurring in
infancy at 6-18 months of age, which included diarrhea, poor weight
gain, and irritability/anorexia, sometimes culminating in a celiac
"crisis".  We now know that there are other forms of presentation
including a Late Onset Gastrointestinal Form, an Extraintestinal Form,
an Asymptomatic Form, an association with other autoimmune diseases,
and a Latent Form.

The Late Onset Gastrointestinal Form can occur at any age and has
symptoms mainly confined to the gastrointestinal tract:  mild or
intermittent diarrhea, steatorrhea (unusual), nausea/vomiting,
abdominal discomfort, constipation (Dr. Fasano is seeing this more
often now), and change in appetite.  Before celiac disease is
diagnosed, these symptoms are often attributed to irritable bowel
syndrome, carbohydrate malabsorption, inflammatory bowel disease, or
even premenstrual syndrome.

The Extraintestinal Form, because it can present in any system of the
body, e.g., the musculoskeletal, skin and mucous membranes,
reproductive, hematological, or central nervous system, makes
diagnosis difficult.  In the Extraintestinal Form affecting the
musculoskeletal system symptoms can include short stature, dental
enamel defects, osteoporosis (due to malabsorption of calcium),
osteomalacia (due to malabsorption of vitamin D), arthritis,
arthralgia, or clubbing.  If the presentation is short stature and the
diagnosis is missed before puberty, there is no way to recover the
lost growth in height.

Dermatitis herpetiformis is an Extraintestinal Form of CD which
usually occurs at age 15-40.  the skin lesions are usually symmetric
and appear on the elbows, buttocks, knees, back, and/or face.

Hematological symptoms include iron-deficient anemia (one of the most
common non-GI presentations now), folate/B12 deficiency, low white
blood cell count, low platelet count, and/or vitamin K deficiency.  He
also noted that the Extraintestinal Form also presents in behavior
cases including epilepsy and cerebellar degeneration.

CD is associated with other autoimmune disorders such as type I
diabetes, thyroid problems, Sjogren's syndrome, liver disease,
rheumatoid arthritis, collagen vascular disease.  An interesting
aspect of the association of CD with other autoimmune disorders is
that immunologists, not just gastroenterologists, are aware that CD is
the only disease in which all components are known:  from the
initiation (genetic predisposition and gluten sensitivity); to the
damage (flattened villi); to the treatment that corrects the condition
(GF diet).

The Asymptomatic Form of CD, which has classical gut damage but no
apparent symptoms, is presumed in Europe to miss seven celiacs for
each one diagnosed.

Screening tests such as glucose tolerance, fecal fat, D-xylose up
take, and intestinal permeability are not specific to celiac disease.
These tests indicate a problem for which there could be a number of
different causes.  The only screening tests specific to CD are the
serological antibody tests:

  *  IgG antibody:  high sensitivity, low specificity
  *  IgA antibody:  low sensitivity, high specificity
  *  Endomysial (also IgA based):  high sensitivity, high specificity

(High sensitivity means the test is not likely to miss someone who is
a celiac.  High specificity means the test usually comes back positive
only for celiac disease and not for any other condition.)

The endomysial test is the best single choice, but fails in two cases:
patients with IgA deficiency (which occurs slightly more often in
celiacs than in non-celiacs), and in children less than two years of
age.  Also, the test results are dependent on the expertise of the
person who interprets the lab slides.

Initial screening studies in Europe indicated that Denmark had a
significantly lower incidence of CD than immediately adjacent Finland.
New screening studies have shown the same incidence as the rest of
Europe.  All serological tests have shown two significant results:
first, there is always a higher than expected frequency of positive
results; and second, the incidence of positive results is uniform
across all regions tested, though the symptoms may vary.

If the genetic and environmental factors are the same in the U.S.  as
in Europe, then the apparently lower prevalence of CD in the U.S.  can
be explained in one of two ways:  There is either a third protective
factor at work in the U.S., or the count is underestimated.

Dietary practices in the U.S.  alter the presentation of CD but not
its existence.  For example, later introduction of solid foods to
children delays the onset of CD.  High allergy referrals, with their
egg, milk and wheat free diets, obscure diagnosis.

Dr. Fasano does not recommend oats for the celiac diet yet.

In 2000, the United States (at the University of Maryland) will host
the ninth International Conference on CD.  This will be the first time
it will be held in the U.S.

A new technique using blood serum and human transglutaminase has been
tested for screening for celiac disease.  Early tests show high
specificity and high sensitivity.  This test is not dependent on the
skill of the individual interpreting slides, therefore it will
probably be cheaper.  If the early test results are verified, this may
eliminate the need for a biopsy to diagnose CD.

The long-term health issues of undiagnosed CD include chronic ill
health, stunted growth, infertility, skeletal disorders, and
malignancies.  This leads to increased health care costs and provides
some justification for expanded screening for CD.

In Q&A, Dr. Fasano indicated that:

  *  a Breath Hydrogen Test can differentiate between CD and Lactose
     Intolerance.

  *  osteoporosis is permanent [after about age 30] and the GF diet
     only halts further deterioration.

  *  folic acid supplements should be taken during any pregnancy.