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25 Years and Still Learning, Dr. Peter Ernst
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Dr. Peter Ernst is Senior Scientist at the Dept. of Pediatrics,
University of Texas Medical Branch. He is the son of Canadian Celiac
Association (CCA) co-founder Kay Ernst, and is a celiac himself.
The classical symptoms of celiac disease (CD) are less common now.
Symptoms such as anemia, osteoporosis, chronic fatigue, and
neurological problems have become more common. From an
epidemiological perspective, most of the history is European and they
are finding fewer children and more adults now. He said we need to
switch from a cereal-based diet. The USA is reexamining its assumed 1
in 5000 classic presentation and 6% of diabetic children. Most
diagnoses are now being made from associated diseases and screening
tests.
CD is an immune system disease and results in an immune system
response according to Dr. Ernst. The activation of the immune system
is what causes injury. The immune response is triggered in the case
of CD by gliadin and other cereal prolamins, and the balance of the
immune regulation controls the type of reaction an individual
exhibits. The response is variable with most people having no
reaction and those with CD having a very robust response.
Celiacs ingesting gluten show a two-to-six-fold increase in intestinal
plasma cells, and an increase in intraepithelial lymphocytes.
There is a genetic factor in CD. In about 70% of the cases where one
identical twin has CD, the other also has it. [Clearly other factors
are also involved, or this would be 100%-ed.] Overall, there is about
a 10% prevalence in first-degree relatives. The prevalence is higher
in relatives with matching HLA haplotypes.
One of the following gene combinations is usually found in celiacs:
DR3-DQ2
DR5/7-DQ2
DR4-DQ8
Other genes are also likely involved in CD. Genetic tests are not
sufficient for screening, because many non-celiacs also have these
same genes.
The endomysial antibody (EMA) blood test is often used to screen for
CD. However, diagnosis should not be made on this test alone. All
EMA-positive patients should have a small-bowel biopsy. If the
characteristic celiac damage is found, and the patient then responds
to a gluten-free (GF) diet, then a diagnosis of CD can be made.
The main treatment for CD is a life-long GF diet. Many celiacs found
it difficult to comply with this diet, due to factors such as:
eating away from home
peer pressure for children, teens
less acceptable taste, texture
accidental ingestion of gluten
The use of oats and wheat starch is a controversial topic. Some
studies have suggested that oats are acceptable on a GF diet, and in
Great Britain wheat starch is considered to be safe for celiacs.
[However, in the US and Canada it is almost universally agreed that
wheat starch is not appropriate for a GF diet. Also, many celiac
experts and most celiac organizations recommend against the use of
oats as well, particularly for celiac children.--ed.]
A GF diet reduces the risk of malignancy in celiacs. It is unclear
how much gluten, if any, is safe, though some feel that low levels of
gluten would not be a problem.
During Dr. Ernst's talk, he indicated his philosophy toward CD which
is, "Don't exclude anything if it is unnecessary." As a result he
made three assertions which may provoke no major objection from
Canadian celiacs but are controversial among US celiacs. Dr. Ernst's
first assertion is that it is almost impossible for gliadins to be in
distilled products. For instance, many people avoid distilled
vinegar; Dr. Ernst believes this is almost certainly unnecessary. In
his mind, there is no "celiac" problem regardless of anecdotal
evidence to the contrary. [This is a view shared by the CCA and many
experts, including USDA grain expert Donald Kasarda. However, many US
celiac organizations, including our support group and CSA/USA,
recommend against the use of distilled products unless the source is a
non-gluten grain. Each celiac must make their own decision regarding
the use of distilled products.-- ed.]
Dr. Ernst's second assertion refers to beer. He agrees with most
British celiacs, where the general view is that you would have to
destroy your liver with the alcohol in several pints a day, in order
to come to harm from the possibly few milligrams of gluten in beer.
[It is virtually unanimous among US and Canadian experts and celiac
organizations that beer would not be safe for celiacs-ed.]
The last controversial statement was that "trace amounts of gliadin in
a GF diet have no immunological impact". In private conversations
with the Tri-County contingent Dr. Ernst defended this conclusion by
noting that there is no data supporting an immune system response from
trace amounts of gluten. Therefore, one should not be concerned with
something that does not produce injury. [Many US and Canadian experts
and most celiac organizations espouse a zero-tolerance policy toward
gluten intake.--ed.]
Dr. Ernst closed his talk by listing some areas for investigation
over the next 25 years:
immunogenetics of disease
factors leading to varying presentations
develop grains deficient in prolamines
vaccine development
relationship to autoimmune diseases
determine how much dietary gluten is safe
evaluate prevalence in North America
In the next 25 years Dr. Ernst expects that:
1. The genetic information on CD will become available.
2. Knowledge of how CD triggers work will become known.
3. An answer will be found to whether the whole protein is a
problem or just certain peptides in the proteins.
4. A vaccine to turn off the immune system response will be
developed.
5. The minimal, or zero, amount of gluten that is acceptable will
be determined.
6. The actual prevalence of CD in North America will be defined by
research.
During the Q&A session at the end of his talk, Dr. Ernst said that
digestive diseases piggyback on prolamin studies. A restructuring of
how diseases are funded is needed. Perhaps money will come from
pharmacy research.
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