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1998 Canadian Celiac Association Conference Highlights
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summarized by Tom & Carolyn Sullivan and Jim Lyles
General Comments
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The conference, the 25th anniversary conference of the Canadian Celiac
Association (CCA), included three main speakers and four break-out
sessions on Saturday and a panel discussion and Q & A on Sunday with
all the speakers. About 350 people attended. It was self-contained
in the hotel and, although kept on schedule quite well, was never
rushed. There was usually time for interaction with the speakers.
Overview of Blood Screening, Dr. George Davidson
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Dr. George Davidson is Professor of Pediatrics at British Columbia
Children's Hospital. Dr. Davidson is also Chairman of the CCA .
The CCA started 25 years ago. It now has 25 chapters and 4,000
members.
Dr. Davidson noted the misconceptions that existed 25 years ago when
the CCA first started with regard to diagnosis and treatment of CD.
He observed that the modern diagnosis and treatment of the disease as
well as its familial involvement was not recognized until the
mid-1950's and the fact that it is a life-long disease was not defined
until 1969.
Several years ago the CCA did a survey among their members. They
found the usual: patients showing a high number of symptoms for years
prior to diagnosis, and multiple doctors seen before diagnosis. Also,
the number of diagnosed patients was far lower than the expected
numbers. Their purpose had been to raise awareness. Dr. Davidson
wondered aloud if they should do a second survey now? [In a lunch
line conversation, Dr. Davidson admitted that he wasn't sure a survey
now would tell them anything new or provide any clues on new
directions.-ed.]
Screening tests reduce the number of people that need to be biopsied;
they don't make a full diagnosis. Tests for intestinal permeability
and sugar absorption are not reliable screening tests for CD. The
screening tests used for CD include:
* Urine, looking for gut damage.
* Serology, looking for antibodies in UNTREATED celiacs:
antigliadin (AGA) (90%+ specificity)
antiendomysial (EMA) (close to 100% specificity)
In Canada, medical care and costs are somewhat different than in the
U.S. Serology testing is not as available as it should be in most
provinces; most testing is done as part of research studies.
Newfoundland has it available as a service but it must be
gastroenterologist-approved. And British Columbia has it as part of
lab service now if ordered by a physician. Dr. Davidson noted that
test and diagnosis is, however, not the end. There must also be
treatment AND follow-up. As an added note, research studies on CD are
expanding in Canada.
Dr. Davidson conducted a Medline search to determine the literature
trend on why celiac disease starts. Although he found little
published, the data supported the following conclusions:
1. Some interest exists in a new theory about a neoantigen being
formed.
2. There is declining interest in the literature about genetics and
CD.
3. A large segment, 1/3 - 1/2 of the data, concerned associated
conditions to CD. There was a large variety of conditions and
screening tools helped in all cases.
4. Malignancy studies are declining. His conclusion is that if CD is
treated, there is no problem.
5. Osteoporosis studies are increasing. However, diet and early
diagnosis help in treatment.
6. CD awareness is a circular flow: awareness leads to screening
which leads to diagnosis which leads to early treatment and
success which leads to increased awareness.
Dr. Davidson compared 1997 publications for CD and Cystic Fibrosis
(CF). This is what he found (the numbers are approximate):
Topic CD Publications CF Publications
----- --------------- ---------------
basic science 5 150
genetics 5 150
clinical 80 300
screening/diagnosis 40 60
nutrition/diet 20 50
psychosocial 2-3 25
other 10 80
Dr. Davidson made three other observations:
1. Human umbilical cord tissue will replace monkey esophagus for the
antiendomysial testing because results are equivalent and the
supply is plentiful and inexpensive.
2. Sugar absorption and intestinal permeability MAY eventually be a
means to possibly determine if hidden gluten is in the diet.
3. Psychosocial studies of CD are essentially non-existent, only 2 -
3. While the need for support for CD patients is known and the
dietary cost is expensive, there are no studies in the literature
on the subject.
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