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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 _KC CS Update_ :
: ---------------------------- :
: Apr. 1995 Helen Richards, editor :
: Aug. 1995 6317 Goodman Dr. :
: Oct. 1995 Merriam, KS 66202 :
:......................................:
Goodie's specializes in GF cookies, but also has coffee cakes,
muffins, bread, and birthday cakes made to order. Many of their
products can be ordered without lactose, sugar, and/or yeast. Their
orders are shipped Federal Express for freshness. Call (213) 934-3001
or write to Goodie's, 7217 Melrose Ave., Los Angeles, CA 90046.
_Digestive Disease Update_ is a quarterly publication from St. Luke's
Hospital in Kansas City, Missouri. You can get on their mailing list
by phoning (816) 932-6200.
_Good Food, Gluten-Free_ is a cookbook written by Hilda Cherry Hills.
This verbose lady hails from Essex, England and has a husband who is a
celiac. The book begins with a short history of CD and its treatment.
Subsequent chapters touch on other diseases linked with CD, feeding
celiac infants and young children, kitchen hints, picnics, dining out,
and 100 pages of recipes. It also contains a list of menu terminology
and definitions of gluten-containing and GF items. Vegetarians will
appreciate the vegetarian section. Though authored by an
Englishwoman, the recipes use ingredients available in the USA. It
sells for $9.95.
Polenta (poh-LEHN-tah) is a GF mush made from cornmeal. It can be
eaten hot with butter or cooled, cut into squares, and fried.
Parmesan cheese can be mixed with it for added flavor. It can be
served as a first course, side dish, or for breakfast.
Gillian's French Rolls produces rolls and many other GF products as
well. The owner, Bob Otolo is a chef and a member of the Celiac
Support Group at Children's Hospital in Boston. Their members declare
the rolls to be "...the best GF bread products we have ever tasted."
Call (617) 286-4095 or write to Gillian's French Rolls, 145 Proctor
Ave., Revere, MA 02151.
Why Treat CD? The following answer to this question comes from
"Celiac Disease and Gluten Sensitivity", by Carol E. Semrad, MD, from
the Columbia University Gastroenterology Web: "In symptomatic
patients the obvious answer is to relieve debilitating symptoms. What
about individuals who have minimal symptoms or who are asymptomatic
[no symptoms]? There are two reasons to treat such individuals with a
GF diet: 1) a subgroup of these patients will progress to more severe
disease and hence develop symptoms, and 2) there is an increased
incidence of small intestinal lymphomas and adenocarcinomas in
individuals with CD. The increased incidence of cancer seems to
correlate with the degree of intestinal inflammation (activity)
present, as individuals whose disease responded to a GF diet and who
remained compliant with the diet had a lower incidence of such
cancers."
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: :
: Excerpts from _CSGC News_ :
: ------------------------- :
: May 1995 Tanis Collard, editor :
: 11 Level Acres Rd. :
: Attleboro, MA 02703 :
:....................................:
Tanis Collard, editor of CSGC News, writes: "Don't forget, unlike
some of the diseases so prevalent in today's society, CD is only a
diet... no medications, no chemotherapy, no transfusions... just a
restrictive diet to enhance the quality of your lives."
............................................................
: :
: Excerpts from the Gluten Free Gang Support Group :
: ------------------------------------------------ :
: newsletter: Summer 1995 Mary Kay Sharrett, co-editor :
: Children's Hospital :
: 700 Children's Drive :
: Columbus, OH 43205 :
:..........................................................:
Calcium Loss and Coffee: Calcium loss is often a problem for celiacs.
It was believed that coffee contributes to bone loss. A recent study
by Tufts University indicates that high intakes of calcium can help
prevent bone-loss for coffee drinkers. This study (done on
non-celiacs) reports that women who consumed an average of 800 mg. of
calcium per day did not lose bone mass no matter how much coffee they
drank.
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: :
: Excerpts from the Houston Celiac-Sprue Support Group :
: ---------------------------------------------------- :
: newsletter: Sept. 1995 Janet Y. Rinehart, President :
: 11011 Chevy Chase :
: Houston, TX 77042-2606 :
:.........................................................:
_Elles' Gluten Free Cookbook_ is new and available from Sterk's
Bakery. Sterk's specializes in gluten-free (GF) products with
packaged bakery goods and also mixes. The cookbook is $9 including
shipping. Make checks payable to Elles Sterk. To order, write to
Sterk's Bakery, 1402 Pine Ave., Suite 543, Niagara Falls, NY 14301.
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: :
: Excerpts from the Westchester CS Support Group :
: ---------------------------------------------- :
: newsletter: Oct. 1995 Sue Goldstein :
: 9 Salem Place :
: White Plains, NY 10605 :
:...................................................:
Celia Cooks, Inc. is back in business! They offer gourmet and
specialty GF foods, such as smoked salmon, vegetables in cream sauce,
soups, pastas, and sauces. They are offering a 10% discount until
Nov. 30th. Call (800) 717-0005 or write to Celia Cooks, PO Box 2698,
Darien, CT 06820.
CEL-KIDS is a brand new Internet discussion group for celiac children
and their parents. This group addresses issues unique to celiac
children and their friends and families. It allows the kids to become
e-mail "pen-pals" with each other, and their parents to discuss issues
unique to raising celiac children. To subscribe to CEL-KIDS, send an
e-mail message to [log in to unmask] containing "SUB CEL-KIDS
firstname lastname". (Don't include the quotes.) Thank you to Mike
Jones (e-mail: [log in to unmask]) for starting this discussion
group!
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: :
: Excerpts from _CDF Newsletter_ :
: ------------------------------ :
: Summer 1995 Elaine Monarch, publisher :
: 13251 Ventura Blvd., Suite 3 :
: Studio City, CA 91604-1838 :
:...........................................:
Intestinal Lymphoma: An increased risk of intestinal lymphoma is one
of the complications of untreated CD. A GF diet gradually reduces
that risk until, after five years on a GF diet, celiacs have the same
risk for intestinal lymphoma as the general population.<3>
CD Symposium Video: This 2-hour video contains the following topics,
as presented at the 1994 World Congresses of Gastroenterology:
Introduction and CD pathogenesis, Martin Kagnoff, MD
Approaches to management of adolescents and teenagers with CD,
Marvin Ament, MD
How to find a celiac: new approaches for diagnosis, Chris Mulder,
MD
Latent CD, treating unresponsiveness and malignant complications,
Michael Marsh, MD
The GF diet: facts, fantasy, and practical approaches, Elaine
Hartsook, PhD
The video is available for $15, including postage. Write to CDF,
13251 Ventura Blvd., Suite 3, Studio City, CA 91604-1838.
........................................................
: :
: Excerpts from _Celiac SprueNews_ :
: -------------------------------- :
: Feb./Mar. 1995 Judee DeJaco, chapter chairperson :
: June/July 1995 10424 Flanders Cove :
: Aug./Sept. 1995 San Diego, CA 92126 :
:......................................................:
Not Always Short: The tallest diagnosed celiacs are a 6'8" man and a
6'3" woman.
Celiac-Diabetes Screening: It is thought that celiacs have a greater
chance of developing Type I (juvenile) diabetes than non-celiacs.
There is a free NIH-sponsored diabetes screening test going on. If
you live in the USA and have a first or second degree relative with
Type I diabetes, you can be tested for free by calling (800) 425-8361.
The purpose of the test is to determine if those without diabetes (but
with certain antibodies indicating diabetes is likely to develop) can
delay or avoid diabetes through very small doses of insulin.<4>
Free Lactose Information: A free information packet on lactose is
available from the National Digestive Disease Information
Clearinghouse, part of the NIH. It includes a fact sheet on lactose
intolerance, a list of manufacturers that produce products for the
lactose intolerant, and a list of additional sources of information
about lactose intolerance. Write to Lactose Intolerance/HL, National
Institute of Health, Bldg. 31, Room 2B23, Bethesda, MD 20892.
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: :
: Excerpts from the Greater Philadelphia CS Support Group :
: ------------------------------------------------------- :
: newsletter: Aug. 1994 Phyllis J. Brogden :
: newsletter: Mar. 1995 6318 Farmar Lane :
: newsletter: Sept. 1995 Flourtown, PA 19031 :
:.........................................................:
CD Research: As of August, 1994, the National Institute of Health
(NIH) has given out the following grants for CD-related research:
* Martin Kagnoff, University of California, $93,100: "Intestinal
Immune System in Host-Environment Interaction"
* Martin Kagnoff, University of California, $153,748: "Activation
of Celiac Disease by Gliadin Peptides"
* Joseph Michalski, University of S. Alabama, $161,472: "Genomic
Screen for NonHLA-Linked Genes in CD"
* Sandra Rosen-Bronson, Georgetown University, $170,967:
"Molecular Analysis of the Pathogenesis of CD"
This started in 1990 at a conference sponsored by the American Celiac
Society and NIH, followed by lobbying to congress, letters from
celiacs across the country to congress, meeting with congress to get
funding approval for the NIH, followed by more lobbying, and finally
culminating in the grants listed above. US Representatives Peter
Kostmayer and Ralph Regula, Sonya Sharp Hartzell, Marie George and her
daughter Paula, Dr. Frank A. Hamilton, Phyllis Brogden, Elaine
Monarch, Mary Alice Warren, Rosalie Jalbert, Virginia Santucci,
Annette Bentley and many others played a part in making this happen.
A Big Thank You to Don Kasarda [a grain specialist with the United
States Department of Agriculture--ed.] for all the personal help he
has given to celiacs over the years. He has patiently dealt with an
avalanche of questions and requests from chairmen and celiacs alike.
He played a key role in the development of the Elisa Test for
antigliadin antibodies.
Mr. Spice Sauces are totally GF, as well as fat free, salt free,
sugar free, and dairy free. They are also diabetic approved and
contain kosher ingredients. They offer nine different sauces. Three
of these were entered in the American Royal International Sauce
Contest and all three won awards: Tai Peanut Sauce (2nd place),
Garlic Steak Sauce (top ten), and Honey BBQ (top ten). Call (800)
728-2348 or write to Lang Naturals, 741 Namquid Drive, Warwick, RI
02888.
Boston Market Alert: For those of you traveling, be forewarned that
the Philadelphia and Denver area Boston Market (formerly Boston
Chicken) stores are testings a new marinade for their chicken, which
currently uses a soy sauce made from wheat. The good news is that
they are trying to find a GF soy sauce to use so that their chicken
would remain GF. In the meantime, though, be wary of their chicken in
the two cities mentioned. Elsewhere in the USA (including Michigan)
their chicken is still GF.
Note that the Philadelphia group found Boston Market to be a pleasure
to deal with. They are knowledgeable about our diet concerns, and can
point out the specific ingredient(s) that is a problem in each food
they serve. They went out of their way to get information for the
Philadelphia group. While you may find problems at some of the
individual stores (mixed serving spoons, careless employees, etc.)
the company as a whole is making a real effort to provide celiacs with
good information.
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: :
: Excerpts from the CSA of Greater Chicago :
: ---------------------------------------- :
: newsletter: Sept. 1995 Gladys Johnson, Editor :
: 943 Fern Ave. :
: Elmhurst, IL 60126 :
:...................................................:
Red Star Yeast has introduced a new bread machine with features such
as rapid baking (two hours) and a bake-only cycle. It makes a 1.5 lb.
loaf. To order, send a check for $149 to E-Rock Int'l, 1001 Yomato
Rd., Suite 308, Boca Raton, FL 33487; or call (800) DOUGH-UF.
Avoid Caramel Color in Quaker Rice Cakes. In Quaker rice cakes, the
caramel color is a barley extract and therefore not safe for celiacs.
Jello Instant Pudding is Not GF; it now contains wheat starch.
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