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Newsletter Roundup
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Compiled by Jim Lyles
We exchange newsletters with several other celiac groups. In this
article I will summarize some of what we've learned from our
newsletter swapping.
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: :
: Excerpts from _Gluten-Free Friends_ :
: ----------------------------------- :
: Winter 1996 (Vol. 3, No. 1) R. Jean Powell, editor :
: Montana Celiac Society :
: 1019 So. Bozeman Ave. #3 :
: Bozeman, MT 59715 :
:........................................................:
A New Edible Grain is being developed at the Montana State University.
Dr. David Sands, a PhD plant pathologist, has received a state grant
from the Dept. of Agriculture to conduct research in the development
of a new grass whose grain provides an edible flour. Named "Montina",
the flour will be chemically tested for gluten-gliadin content as well
as nutritional and protein content. Because it is a rice-like grain
it is not expected to contain gliadin-like proteins. Testing by
celiac volunteers is expected to begin soon.
Montina is a perennial which won't require yearly tilling and may be
grazed after harvest, which makes it an environmentally-friendly
grain. The flour produces a bread similar in taste and consistency to
pumpernickel rye bread. It is at present the star ingredient in a
baking contest sponsored by the Montana State University Plant
Pathology Dept.
Dr. Sands warns that gluten-intolerant individuals should wait for
further test results before sampling products containing this new
grain. We wish Dr. Sands and his staff great success!
..........................................................
: :
: Excerpts from _Lifeline_ :
: ------------------------ :
: Winter 1997 (Vol. XV, No. 1) Leon Rottmann, editor :
: CSA/USA, Inc. :
: PO Box 31700 :
: Omaha, NE 68131-0700 :
:........................................................:
Celiac Disease and Alopecia Areata: Celiac disease (CD) is frequently
associated with other auto-immune disorders but not previously with
alopecia areata. [Alopecia areata is a common condition that results
in the loss of hair on the scalp and elsewhere. Modern immunological
research is showing that alopecia areata is probably an autoimmune
disorder, one in which the body forms antibodies against some part of
the hair follicle (a type of "self-allergy").<7>]
In a routine clinical practice, three patients with such an
association were observed. In one of the patients CD was diagnosed
after the occurrence of malabsorption symptoms. Another patient, a
14-year-old boy, experienced complete regrowth of scalp and body hair
after going on a gluten-free (GF) diet. As a result, 256 consecutive
outpatients with alopecia areata were screened using serum antibody
tests. Three patients, all without symptoms of intestinal diseases,
were found to have positive antibody tests and were subsequently
biopsied. All had flat intestinal mucosa consistent with a diagnosis
of CD [a ratio of about 85:1--editor].
The results show that alopecia areata might be the only symptom of
active CD and that the frequency of association may be much greater
than would be expected by chance alone. It is suggested that
antigliadin and antiendomysial antibody tests be included in the
work-up of patients with alopecia areata.<8>
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: :
: Excerpts from the San Antonio CS Support Group :
: ---------------------------------------------- :
: newsletter: Jan. 1997 Lynn Rainwater, Secretary/Treasurer :
: 1023 Cloverbrook :
: San Antonio, TX 78245-1604 :
:...............................................................:
Wild Rice: Dr. Donald D. Kasarda, a well-known wheat protein
chemist with the USDA, has said that based on the taxonomy in
Hitchcock's _Manual of the Grasses of the United States_ (1950), wild
rice (Tribe 10) and rice (Tribe 9) are moderately closely related, but
are fairly distant in relationship to wheat, rye, barley (Tribe 3) and
oats (Tribe 4).<9> Wild rice is probably appropriate for celiacs, so
long as it comes from an uncontaminated source.<10>
The Chicago Tribune Service has provided advice on using wild rice.
It is good to have in the pantry because it keeps indefinitely. There
are many ways to flatter its nutty taste. After boiling, it can be
tossed with butter and toasted pecan; mixed with sauted mushrooms;
cooked into a creamy soup with chicken and celery; and mixed with
dried fruit, onions, and herbs.
Wild rice absorbs about four times its volume of water during cooking,
depending on how dry the rice is. To cook it, place it in a saucepan
with a generous amount of cold water. Heat to a boil, then simmer
gently, covered, until the grains are tender; about 35-60 minutes.
A wild rice flour is now available. This nutty, slightly sweet flour
makes a delightful addition to breads, pancakes, biscuits, and more.
It is available in 12-ounce bags from The Gluten-Free Pantry, PO Box
840, Glastonbury, CT 06033; (800) 291-8386.
-=-=-=-=-
GF Tylenol Substitute: Freeda Pharmacy, Inc. is making available to
celiacs a certified, grain-free acetaminophen tablet. Grain-free also
means gluten-free, making this product suitable for celiacs. It is
available directly from the company for $9.95 per 60 tablets. Contact
Freeda Pharmacy, Inc., 36 E. 41st ST., New York, NY 10017; (800)
777-3737 or (212) 685-4980; fax (212) 685-7297.
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: :
: Excerpts from the Westchester CS Support Group :
: ---------------------------------------------- :
: newsletter: Dec. 1996 Sue Goldstein :
: newsletter: Feb. 1997 9 Salem Place :
: White Plains, NY 10605 :
:...................................................:
Osteoporosis and Celiac Disease: [Elizabeth Shane, MD, made a
presentation to the Greater NY Celiac Support Group last October,
which Sue Goldstein summarized. Dr. Shane is an endocrinologist in
the Metabolic Bone Disease Program at Columbia-Presbyterian Medical
Center in New York City. We covered bone disease in _The Sprue-nik
Press_ in the May 1996 issue, so in this issue I've just picked out a
few highlights from her summary--editor.]
Risk factors for osteoporosis fall into two categories: those you can
change and those you can't. Factors you cannot change include:
1. Gender: Women have much lower bone density than men, and are at
higher risk.
2. Race: Caucasians and people of Asian origin are at greater risk
than people of African origin.
3. Genetics: To a major extent bone density is genetically
determined. A family history of fractures (particularly to the
hip) is an important risk factor.
4. Stature: Shorter people tend to have smaller, thinner bones.
5. Age: The incidence of new fractures increase dramatically with
age in both men and women.
Factors that you CAN change include:
1. Diet: Maintain an adequate supply of calcium in the diet.
2. Estrogen Levels: After menopause there is a period of rapid bone
loss because of estrogen deficiency. This can also occur before
menopause in women with infrequent menstrual periods or low
estrogen levels. Women can be treated with estrogen replacement
therapy, when appropriate, at the time of menopause.
3. Exercise: 30-minute walks, 3-4 times a week, can do a lot to
keep your bones healthy, as can other weight-bearing exercise
repeated at regular intervals.
4. Healthy Lifestyle Choices: Smoking prevents the deposition of
new bone, as does excessive consumption of alcohol (two or more
drinks a day).
5. Drugs: Many drugs in common use can affect bone density,
including glucocorticoids, thyroid hormone, heparin, and certain
diuretics.
Some selected questions and answers:
Q: How much calcium should be taken in one dose?
A: The most efficient absorption of calcium is from 500 mg. doses,
taken during the day. Calcium carbonate should be taken with food
for best absorption. Calcium citrate does not need to be taken
with food. [Dorothy Vaughan, our dietitian advisor, reminds you
to check the GF status of any supplement you plan on using--ed.]
Q: What are the recommended daily allowances of calcium?
A: Most adults need 1000 mg. Postmenopausal women not on estrogen
need 1500 mg. Before age 10, children need 800 mg. Adolescents,
ages 10 and up, require 1500 mg. Celiacs may need more than these
recommended allowances; this needs to be determined on an
individual basis. [Editor's note: During pregnancy and while
breast-feeding, women also need more calcium.]
Q: Are magnesium and zinc supplements beneficial for bone? What
about boron?
A: Magnesium would be helpful only if the patient has a magnesium
deficiency; otherwise there is no evidence that it improves the
absorption of calcium or the effect of calcium on bone. I'm not
aware of any evidence of zinc or boron having any benefits.
-=-=-=-=-
Other Medical News:
* A study was conducted with 63 newly-diagnosed celiacs (17-79
years, 35 women) and 25 healthy [i.e., non-celiac] controls
matched for sex, age, and menopausal state. During the first
year on a gluten-free (GF) diet bone mineral density increased in
all the measured areas (forearm, lumbar spine, femoral neck, and
trochanter). This increase was observed in patients of all ages,
including patients without symptoms of malabsorption before
treatment.<11>
* 115 children with Down syndrome were screened for celiac disease
(CD), using antigliadin, antiendomysium, and antireticulin serum
antibodies and an intestinal permeability test. CD was diagnosed
in eight children, giving a frequency of 7% [or a ratio of about
15:1]. It is recommended that all persons with Down syndrome be
screened for CD, using at least the antiendomysium serum antibody
test.<12>
* 119 children with juvenile chronic arthritis (JCA) were screened
for CD. Four children were found to have antiendomysium
antibodies. Intestinal biopsies revealed villous atrophy in
three of these children, an incidence of 2.5% [ or a ratio of
about 40:1]. It was concluded that the prevalence of CD is
increased in patients with JCA.<13>
* The effect of the GF diet on pregnancy outcome and lactation was
studied in 125 celiac women, 94 untreated [i.e., NOT on a GF
diet] and 31 treated. A comparison of the untreated and treated
women indicated:
-- The relative risk of abortion was 8.90 times higher.
-- The relative risk of low birth weight baby was 5.84 times
higher.
-- The duration of breast-feeding was 2.54 times shorter.
It was concluded that for women with CD, a GF diet effectively
corrects high incidence of abortion, low birth weight babies, and
short breast-feeding periods.<14>
-=-=-=-=-
No Need To Pass Over: Passover is on its way. In stores you will
discover a variety of Passover items free of wheat, rye, oats, and
barley. CAUTION: Not all Passover items are GF. Avoid items that
contain matzo, matzo meal, cake meal, or Passover flour. As always,
read labels carefully.
Kollel is an organization that has spent considerable time and money
each year to provide a definitive Passover guide to cosmetics and
medications. For a copy of the 1997 Kollel booklet, write to
Kollel-Los Angeles, Number 204, 7466 Beverly Blvd., Los Angeles, CA
90036. A small contribution with your letter would be appreciated.
................................................
: :
: Excerpts from _Whoo's Report_ :
: ----------------------------- :
: 1996-vol. II Annette Bentley, editor :
: The American Celiac Society :
: 58 Musano Court :
: West Orange, NJ 07052-4103 :
:..............................................:
Conference Highlights: The annual conference for the American Celiac
Society was held on November 9th, 1996. Here are some of the
highlights:
* Dr. Keith J. Benkov presented "Celiac Disease (CD) and Chronic
Diarrhea in Children". Dr. Benkov pointed out that there are
many other causes of diarrhea and failure to thrive in children,
and that it is not advisable to restrict the diet of a child that
does not have CD. For example, in the previous year among new
patients at his center there were 164 children with diarrhea and
failure to thrive; only 8 of these were biopsy-proven to have CD.
Other causes of diarrhea in children include dietary imbalance,
irritable bowel syndrome, protein allergies, and chronic or
recurrent infections.
* Dr. Vijay Kumar presented "Predictive Values of Serology testing
in CD". The reliability of serology testing for CD is high
enough that serology markers (endomysium, reticulin, and gliadin
antibodies) have recently been incorporated into the revised
ESPGAN criteria for diagnosing CD. Villous atrophy in
combination with at least two of the three serological antibody
markers being positive are now considered conclusive for a
diagnosis of CD.
* Dr. Alessio Fasano presented "Where Have All the American
Celiacs Gone?" Preliminary studies done by Dr. Fasano on both
pediatric patients and adult blood donors suggest that the
prevalence of CD in the USA is equivalent to that reported in
Europe. Dr. Fasano feels that a larger, multi-center serology
screenings are needed to define the true prevalence of CD in the
USA.
Copies of the conference handouts are available for $10, and
conference tapes can be purchased for $25. Write to American Celiac
Society, 58 Musano Court, West Orange, NJ 07052-4114.
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