<<Disclaimer: Verify this information before applying it to your situation.>>
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 _The Celiac ActionLine_ :
: ------------------------------------- :
: Summer 1996 (Vol. 6, No. 3) Mike Jones, Publisher :
: Celiacs of Orlando & GIG of Florida :
: 12733 Newfield Drive :
: Orlando, FL 32837 :
:.......................................................:
Internet Access: If you have a computer and a modem, the only other
requirement for obtaining access to celiac information on the internet
is to obtain service through an Internet Service Provider. Costs
vary, with an average of around $20 per month.
Recently, a provider started offering free access. The only
restrictions are: 1) you are limited only to e-mail, 2) advertising
appears on the screen with the messages you send and receive, and 3)
only the Windows platform is currently supported, though there are
plans for a Macintosh version. Discussions with some of the current
users indicate that this is a reasonable services with a variety of
local phone numbers for access. There are no startup costs, and it
can be canceled at any time. The free e-mail service is called JUNO.
You can get more information by visiting http://www.juno.com on
the world wide web. To receive their software, send your name and
address by e-mail to [log in to unmask], or call 1-800-654-JUNO.
-=-=-=-=-
What's In a Name? How should a person with celiac disease be
referenced? The word "disease" creates an impression about the
condition that is entirely false; as long as the diet is followed it
is not an untreatable disease and the person with CD is healthy. But
without a qualifier such as "disease", the medical community and the
government may downplay the importance of knowing the exact
ingredients in a product.
Many people are beginning to refer to themselves as being a celiac.
When additional questions are asked, they state that they are required
to maintain their good health through a controlled diet. This is
especially true for teenagers.
-=-=-=-=-
Brown Rice Syrup that does not use a barley enzyme is starting to show
up in products. The maker of Rice Dream is using this safe syrup in
their Imagine Puddings Snacks. In the future, it may be used in Rice
Dream and Rice Frozen Desserts. Call the company at (415) 327-1444 to
determine the current status.
...........................................................
: :
: Excerpts from the Central New York Celiac Support Group :
: ------------------------------------------------------- :
: newsletter: Dec. 1996 Amy D. Eliezer, editor :
: 4 Firtree Lane :
: Jamesville, NY 13078 :
:.........................................................:
Nancy Patin Fallini, RD, specializes in celiac disease (CD). She gave
a talk on Nov. 9, 1996, at Mt. Sinai Hospital, in New York City, as
part of the American Celiac Society Conference. [She aimed her talk
at the physicians in the audience who will be diagnosing CD and then
advising their patients of the treatment.--ed.] What follows are
highlights of her talk.
The primary grains which are harmful to celiacs are: wheat, rye,
barley, triticale, spelt, and kamut. Recent studies suggest oats may
be safe, but uncontaminated oats are not generally available in this
country, and not all experts agree they are safe. So oats should
remain on the "forbidden" list.
There are some controversial grains. Sorghum, millet, teff, Job's
Tears, and ragi are related to corn. Other grains distantly related
to wheat, in the grass family, include buckwheat, quinoa, amaranth,
and rapeseed. Some experts claim that these grains are unlikely to be
toxic to celiacs. However the opposing view is that none of these
grains have been tested, so can we be sure they are safe?
Foods that are safe for celiacs include corn, potatoes, rice,
arrowroot, soy, tapioca, and dried beans. Flours are made from all of
these foods.
Is the gluten-free (GF) diet nutritionally adequate? Perhaps, if a
person is eating a wide variety of foods and has a well-healed
gastrointestinal tract and no other dietary restrictions. But a GF
diet puts you at greater risk for nutrient deficiencies:
* A GF meal plan may be lower in fiber or iron.
* GF foods are not always readily available.
* Many celiacs have other food intolerances, which decrease their
choices on an already-restricted diet.
* American diets in general fail to meet the basic dietary
recommendations for a well-balanced diet.
Lactose intolerance can be a problem for newly-diagnosed celiacs.
Treatment includes eating fermented dairy products (yogurt, hard
cheeses, cottage cheese) and taking digestive aides such as Lactaid
droplets in milk, and Dairy Ease caplets and tablets.
Soy is another common food sensitivity for many celiacs. Like wheat,
soy can be used to make many other ingredients so that it is hard to
detect and further limits food selections.
Many deficiencies can be found in [untreated] celiacs, and may need
treatment with supplements. These include iron, folate (especially
for women of child-bearing age), calcium, vitamin D and other
fat-soluble vitamins, and (less commonly) vitamin B12.
Vitamin and mineral supplements should be used to replete whatever
deficiencies are detected. Also, a multiple vitamin/mineral
supplement is recommended for celiacs both during diagnosis and for
the long term. But it is not wise to exceed 100% of the recommended
daily allowances, unless directed by your physician. For example,
high iron stores increase the risk of cardiovascular disease and some
cancers.
Medications can affect vitamin and mineral absorption. For example,
prednisone (which may be used to treat celiacs not responding to a
truly GF diet) can decrease calcium absorption and increase the need
for folic acid, among other things. Excessive thyroid hormones can
block calcium from the bones, thus facilitating or exacerbating
osteoporosis.
Two supplements can be particularly helpful to patients with
steatorrhea, because they provide water-miscible or water-soluble
forms of normally fat-soluble vitamins, and are GF to boot: 1) Astra
USA Inc. produces Aquasol A drops and capsules, and Aquasol E; all of
which are water-miscible. 2) Nature's Bounty has water-soluble
vitamin E supplements called Vitamin E 400.
Celiacs are more prone to bone problems, such as rickets, bone pain,
osteomalacia, osteopenia, and osteoporosis. The key is to get the
patient diagnosed with CD as early as possible. Molteni and his
colleagues have found in one study that bone mineral deficiency can
occur in asymptomatic celiacs, so we cannot go by symptoms alone.
Celiacs who are not treated or not diagnosed are certainly
malabsorbing calcium.
There is a 5-6% occurrence of diabetes among celiacs, and a higher
incidence of CD in type I diabetics. To manage diabetic celiacs, a
doctor must closely monitor medications and modify them as normal
absorption returns. A registered dietitian should also be involved.
GF foods are often not required to specify nutrient content on their
labels, so it is often guesswork to accurately assess carbohydrate
intake. Often GF foods are more dense in some nutrients, including
carbohydrates as well as calories. For instance, a slice of GF bread
may have 24 grams of carbohydrates and 170 calories while a slice of
wheat bread may contain only 15 grams of carbohydrates and 80
calories. Also, celiac-diabetics need to keep GF carbohydrates on
hand to treat hypoglycemia, such as 100% pure fruit juice in
individual containers. Milk or some types of Lifesavers (hard candy)
or sugar packets could also be used for this purpose.
What about social issues? Emphasize what CAN be eaten, and even
provide them with a simple starter meal including fresh meats,
poultry, fish, fresh vegetables and fruits, potatoes, rice, cornmeal,
and rice noodles. Also add in milk and plain yogurt if lactose
intolerance is not a problem. Emphasize that they will have an
improved sense of well-being. Young children should become involved
in their own treatment; this helps empower them and improves
compliance.
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: :
: Excerpts from _Gluten-Free Friends_ :
: ----------------------------------- :
: Winter 1996 (Vol. 2, No. 4) R. Jean Powell, editor :
: Montana Celiac Society :
: 1019 So. Bozeman Ave. #3 :
: Bozeman, MT 59715 :
:........................................................:
Neurological Involvement In CD: (Compiled by R. Jean Powell) In his
treatise on Celiac Sprue Disease (available from CSA/USA), Jerry S.
Trier describes cerebellar atrophy and patchy demyelinization of the
spinal chord in severely diseased celiac patients.
Neurologic symptoms caused by lesions of the central or peripheral
nervous system are not common in celiac patients, but do occur
occasionally in severely diseased individuals. Muscle weakness,
paresthesias (tingling) with sensory loss, and ataxia (stumbling gait)
are the most common symptoms encountered. Evidence of peripheral
neuropathy and (very rarely) patchy demyelinization of the spinal
chord, cerebral atrophy, and capillary proliferation have been
described.
An association exists between epilepsy and CD. In an Italian study,
patients with epilepsy and cerebellar calcification were given small
bowel biopsies. 77% had villous atrophy. Seizures ceased or were
reduced in frequency by at least 50% in a third of the patients after
they started on a GF diet. It was in the younger patients, with a
shorter history of epilepsy, that the seizures ceased altogether.<3>
Neurological manifestations of adult CD include cerebellar ataxia,
sensory neuropathy, myopathy, hyporeflexis, and seizures. These
symptoms resemble those of Vitamin E deficiency. Patients with
abetalipoproteinaenemia, who lack the lipoproteins necessary to carry
fat-soluble vitamins, have similar symptoms. These patients respond
to water-miscible Vitamin E supplementation.<4>
A study was done investigating the frequency of antigliadin antibodies
(as a measure of cryptic gluten sensitivity) and CD in neurological
patients. One question that was raised was: If antigliadin
antibodies are directly or indirectly neurotoxic, why do patients with
neurological dysfunction not always improve on a GF diet? One
possibility is that damaged neural tissue does not regenerate. The
other possibility is that patients may not strictly adhere to the GF
diet, or the diet my be insufficient to suppress the immunological
process completely. It seems possible (though unproven) that strict
adherence to a GF diet, with the subsequent elimination of antigliadin
antibodies, may result in stabilization or even improvement of
neurological dysfunction. Antigliadin antibody estimation should be a
part of the routine investigation of any patient with neurological
dysfunction of unknown cause.<5>
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: :
: Excerpts from the Midlands Chapter 13 Support Group :
: --------------------------------------------------- :
: newsletter: Nov. 1996 Sandra K. Allen, editor :
: Route 1 Box 707 :
: Fort Calhoun, NE 68023 :
:.....................................................:
Facts About Rice: The following excerpts come from _Rice: A
Cookbook_, by Maria Louisa Scott & Jack Denton Scott, ISBN
0-89043-267-8:
* Rice can actually supply 80% of our daily food requirements. One
pound of rice delivers about four times the food energy of an
equal weight of potatoes.
* White rice has a shelf life of 1-2 years; for brown rice it is
about six months.
* Rice is the most digestible of the important complex
carbohydrates, requiring only one hour to digest as opposed to
2-4 hours for other foods.
* A 1/2 cup serving of cooked rice has 84 calories, no cholesterol,
is low in sodium, and has all the essential amino acids.
* Long-grain rice cooks up separate and fluffy. Medium- and
short-grain rice cooks moist and tender, and clings together.
* Rice undergoes different degrees of processing:
-- Brown rice has minimal processing and is the most
nutritious.
-- Regular milled white rice has the outer husk removed and the
bran layers milled until the grain is white.
-- Parboiled (converted) rice has gone through a steam-pressure
process before milling to keep the cooked grains separate
and fluffy.
-- Precooked (minute) rice merely needs to be rehydrated before
being eaten.
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: :
: Excerpts from _KC CS Update_ :
: ---------------------------- :
: Oct. 1996 Helen Richards, editor :
: Greater Kansas City Chapter of CSA/USA :
: 6317 Goodman Dr. :
: Merriam, KS 66202 :
:............................................:
Get Copies of Medical Reports at the time of diagnosis to keep in a
personal health file at home or in your safety deposit box. This is
especially important of children's medical records. Why? Hospitals
cannot store records indefinitely, and will usually keep them 21 years
for children and as little as 7 years for adults. So if a need arises
later in life, particularly with a lifelong condition such as celiac
disease, you will be prepared.
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: :
: Excerpts from the San Antonio CS Support Group :
: ---------------------------------------------- :
: newsletter: Oct. 1996 Lynn Rainwater, Secretary/Treasurer :
: 1023 Cloverbrook :
: San Antonio, TX 78245-1604 :
:...............................................................:
Tex-Mex/Creole Cookbook: This cookbook was developed for the CSA
conference in October, by Judy Suneson, BS, RD, LD (and the dietitian
advisor for the Lone Star Support Group, which hosted the conference).
This is a 27-page booklet with 60 recipes provided by Texas and area
celiacs. To get a copy, send a check for $2.25 payable to SA Celiac
Sprue Support Group to Lynn Rainwater, 1023 Cloverbrook, San Antonio,
TX 78245-1604.
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