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Report from the 1998 CSA Conference
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by Tom & Carolyn Sullivan
Celiac Disease--Then and Now
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Friday, Oct. 30, 1998, 9:00 AM, General Session, Richard J. Grand,
M.D., Pediatric Gastroenterologist, Chief, Division of
Gastroenterology and Nutrition, The Floating Hospital for Children,
New England Medical Center and Department of Pediatrics, Division of
Gastroenterology, Tufts University School of Medicine
Treatment is a team activity - physician and patient. Teach your
physician. If you don't have success, find another physician.
The gluten-free (GF) diet is not simple. It requires lots of work.
Staying on the diet, however, eliminates complications. One big
offender in strict diet adherence is soy sauce. Dr. Grand also
stipulates NO OATS in the diet because you can't find pure,
uncontaminated oats. In fact, celiac disease (CD) is the ONLY disease
in which the RISK of lymphoma disappears with adherence to a diet.
Although CD can be diagnosed at any age, there are two age peaks for
diagnosis - 9-20 months, ("failure to thrive" children) and the third
decade of life, around 35 years old. Diagnosis is rare in Asians and
Blacks. The incidence of CD is 1:300 in Ireland but only 1:2860 in
Australia and Dr. Grand would expect the U.S. incidence to be that
of Australia rather than Ireland.
Research Review of Transgenic Foods
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Friday, Oct. 30, 1998, 10:00 AM, Concurrent Session, Alan C. Koepke,
Ph.D., Manager, Strategic Planning and Development, DeKALB Genetics
Corp.
[This is a highly technical section. We've included it for two
reasons: There may be a possibility someday of gluten-related genes
be put in foods that are gluten-free today, so we want you to be aware
of this possibility. Also, there is a faint hope that genetic changes
could be made to wheat one day to possibly make it gluten free. Keep
reading those labels!-editor]
DeKalb is a family owned, midwest, corn breeding business that is in
the process of being acquired by Monsanto.
Transgenics, or plant biotechnology, or genetic engineering, is
exactly the same as classical plant breeding. The difference is the
means to the end. In classical plant breeding, one identifies a
desired trait and then cross breeds the desired trait into the desired
plant while minimizing any undesired traits. In genetic engineering,
one still identifies a desired trait. But then one finds an organism
with the desired trait, animal, vegetable or mineral; isolates the
gene which produces the desired trait; builds a gene construct, or a
gene constraint and carrier; moves the gene into the plant cell in a
process called transformation; finds the cells which the gene has
modified; and then regenerates whole plants for testing and
production.
The genetic engineering process can theoretically add a gene to a
plant to turn on a good trait or turn off an undesirable trait.
Current efforts in transgenics are directed toward improved agronomic
traits; that is, improved herbicide resistance, improved insect
resistance, and improved disease resistance.
Efforts over the next 5 to 10 years will be directed toward improved
product quality traits. Because livestock are simply converters of
corn to food, improved livestock nutrition will be the focus. This
will include higher oil corn, doubling the current 4-4.5% level to 7%
and greater for increased fat (energy); enhanced amino acids
(protein); and reduced phosphorus excretion (lower phosphorus cattle
manure for reduced environmental impact). Future research efforts
will be in the area of plants that are nutrition enhancements or
industrial chemicals.
Three currently genetically engineered products are a high stearate
soybean which requires no hydrogenation and has no trans fatty acids;
a laurate canola as an alternate to tropical oils which can be grown
in temperate climates; and a high oleic soybean which has less
saturated fat and is very heat stable.
The challenge for genetic engineering of wheat is two fold. First,
wheat is hard to hybridize because the male and female portions of the
plant are in the same flower and not separate. And second, the tissue
culture system is very difficult to transform. In fact, the first
transform of wheat was only accomplished in 1992. In response to a
question, Mr. Koepke indicated that in theory gluten could be
engineered out of wheat. However, what would result and when or if it
would be attempted he could not guess.
10 Dreams For CSA
-----------------
Friday, Oct. 30, 1998, Noon, Ruth Smith, 1999-2000 CSA President
Ruth offered her dream of providing leadership for a purposeful
organization that involves all related areas, dietitians, FDA, NIH,
distributors, celiacs, etc., in the cause of Celiacs Helping Celiacs.
However, she cannot do it alone and requires volunteers with the
appropriate skills, finance, business, communication, etc., to step
forward and assist. And throughout it all, while being passionate
about our cause, remain approachable by anyone and keep a sense of
humor. Ruth invited everyone to be her partner.
Serological Testing for Celiac Disease
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Friday, Oct. 30, 1998, 1:00 PM, General Session, Ciaron P. Kelly,
M.D., Beth Israel Deaconess Medical Center, Harvard Medical School
Tissue transglutaminase, which is an intercellular enzyme or
biological glue released by cell damage, may become a new epitope for
screening and/or diagnosing CD.<2>
Although the IgA antibody test is extremely specific for CD and debate
continues about only using it for positive diagnosis, a biopsy is
still the gold standard for diagnosis. The IgA test plus a biopsy is
a complete diagnosis.
A solid diagnosis in the beginning is a diagnosis for life. The IgA
and IgG antibody tests can then be used to monitor compliance with the
GF diet. The IgA levels should drop noticeably within 3 to 6 months
on a strict GF diet. The IgG levels drop much more slowly and could
take up to 2 years to be noticeable.
Review of Dermatitis Herpetiformis
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Friday, Oct. 30, 1998, 2:00 PM, Concurrent Session, Kathryn E.
Bowers, M.D., Beth Israel Deaconess Hospital, Boston
Clinical symptoms of dermatitis herpetiformis (DH) include:
Erythematous papules, vesicals or wheals; variable erosions and
crusts; occurs symmetrically on the extensor surfaces of shoulders,
elbows, scalp, buttocks and/or sacrum. It is rare on the face or oral
mucosa. There is intense pruritis, burning and stinging. (The same
nerve is involved.) [Ed. note: A member says it seems to go to
different places and another member says it is not symmetrical.]
The typical age of onset is 20-60 years, although some children have
it, but "the skin does not read books". IgA circulates in the blood.
The prevalence in Anglo-Saxons is 10-39 in 100,000, with a 2:1 male
predominance, but it is unusual in Black Americans and Asians. 60-70%
of patients show symptoms of Gluten Sensitive Enteropathy in a small
intestine biopsy.
There are the following disease associations: increased risk for
gastrointestinal lymphomas, thyroid disease, atrophic gastritis,
dermatomyositis, etc.
It is diagnosed by using a punch biopsy which must not be from
lesional skin. The books say use the buttocks. IgA is found in areas
of increased involvement such as back, elbow, etc. Immunofluorescense
shows a granular pattern.
Treatment includes: Dapsone, 100-150 mg per day, then reduction to
25-50 mg per day; Sulfapyridine, 1.0-1.5 grams/day with lots of
fluids; and the gluten-free diet which takes time as it is slow to
create a response.
Candidates for the gluten-free diet are: Those motivated individuals
who wish to avoid drug therapy, G6PD deficiency, history of hemoglobin
abnormalities, sulfa allergy, women of child-bearing age, histological
adverse reaction to sulfones,and moderate or severe cardiopulmonary
disease. [Note: We advise ALL those with DH to follow a strict
gluten-free diet; there are too many long-term complications that can
arise from the continual damage to the gut caused by ingesting gluten.
The gluten-free diet is an essential part of the treatment of most
cases of DH.--editor]
The gluten-free diet decreases signs and symptoms and decreases the
dapsone requirement.
Non-steroidal anti-inflammatory drugs can make DH worse.
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