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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 the Gluten Intolerance Group of North America :
: ----------------------------------------------------------- :
: newsletter: June 1996 Cynthia Rolette, editor :
: PO Box 23053 :
: Seattle, WA 98102-0353 :
:.............................................................:
Marvelous Marinades: Marinades are a wonderful means of adding flavor
to many dishes, and are useful in tenderizing meat. DowBrands has a
nice booklet of marinades for many purposes. Write to: Marvelous
Marinades, DowBrands L.P., PO Box 68511, Indianapolis, IN 46268. Ask
for Form #218-971-94.
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| Information from _The Celiac ActionLine_ was removed, |
| since it already appears elsewhere in the archives. |
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: :
: Excerpts from _Derby City Celiac_ :
: --------------------------------- :
: Summer 1996 Marge Johannemann, President :
: Greater Louisville Celiac Sprue Support Group :
: PO Box 7194 :
: Louisville, KY 40257-0194 :
:....................................................:
Dr. Joseph Murray gave a talk at the University of Louisville on March
21, 1996. Here are some excerpts from the talk:
* Typical symptoms of CD include diarrhea, steatorrhea, anemia,
vitamin deficiency, and weight loss.
* Frequent atypical symptoms of CD include fatigue, depression,
milk intolerance, osteomalacia, and osteoporosis.
* Less frequently recognized atypical symptoms of CD include
constipation, osteopenia, arthralgias, short stature,
neurological disorders, and dental enamel defects.
* CD affects people throughout Europe, the Near East, and North
Africa. Cases have also been reported in Cuba, Kuwait, Sudan,
and India. CD is very rare among African-Americans and
Orientals.
* From country to country, the rate of diagnosis seems to
correspond to the level of suspicion of its prevalence.
* Dr. Murray has 10 principles for treating CD:
1. Explain the condition; expect grief reactions.
2. Give up-to-date professional dietary advice on achieving a
GF lifestyle.
3. Encourage the patient to join both local and national
support groups as an essential part of treatment.
4. Prescribe nutritional supplementation to correct
deficiencies.
5. Perform baseline bone density measurements.
6. Consider screening at-risk family members.
7. Provide intensive nutritional support and fluid replacement,
if needed, for very ill patients.
8. Consider co-existing malignancy/autoimmune disease in very
ill patients.
9. Follow-up with patients to ensure response and compliance to
the GF diet.
10. To quote Elaine Hartsook: "Send the patient off with
champagne and encouragement, not pessimism."
* Dr. Murray does not consider the following to be helpful in
managing the a GF diet: home testing kits for gluten, large
listings of GF commercially-available processed foods, and
self-challenges to test a food's safety.
-=-=-=-=-=-=-
Have My Bread and Travel Too: LaVaughan Will took a 3-1/2 week trip
recently, and wondered how she might have bread with her. Ener-G's
individually packaged slices provided one alternative, but LaVaughan
has gotten used to home made bread from her breadmaker. Her solution?
She took the breadmaker with her, stored in a large canvas bag. She
also took several bags of pre-mixed dry ingredients, with a list of
the needed wet ingredients listed on each bag. When she needed bread
she would stop at a local grocery store and buy a half-dozen eggs.
Then she would carry the bread machine into the hotel, add the yeast,
dry ingredients, and wet ingredients, push the start button, and go to
bed. The next morning she had fresh bread to eat with her coffee.
She used a small hot pot to soft-boil the remaining eggs. Because it
spoils fast, her husband helped her eat the bread and found it to be a
real treat.
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: :
: Excerpts from the Greater Philadelphia CS Support Group :
: ------------------------------------------------------- :
: newsletter: July 1996 Phyllis J. Brogden :
: 6318 Farmar Lane :
: Flourtown, PA 19031 :
:.........................................................:
Thomas Mace & Associates is going out of business. This is a
mail-order company that provided Basco products in the US, as well as
some bean flour products from Authentic Foods. Tom Mace still has 35
cases of Basco bread mix left. A bread machine is not required. The
ingredients are: Maize [corn] starch, rice flour, skim milk powder,
glucono delta lactone (rising agent), sugar, baking powder, salt, and
xanthan gum. The cost is $3.55 per package plus delivery. Write to
Thomas Mace & Associates, PO Box 1498, Monument, CO 80132-1498; or
call (800) 692-7323.
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Authentic Foods products can be ordered directly from the company.
This includes the light bean flour Bette Hagman refers to in her
latest cook book, _The Gluten-Free Gourmet Cooks Fast and Healthy_.
Authentic Foods carries flours (bean, brown rice), pancake & muffin
mix, falafel (vegetarian burger) mix, cake mixes (chocolate, lemon),
vanilla powder, maple sugar, xanthan gum, bread mixes (regular,
cinnamon), and tapioca flour. The tapioca flour is $.75 per pound.
Shipping and handling is $6.50, no matter how much you order. Write
to Authentic Foods, 1850 W. 169th St., Suite B, Gardena, CA 90247;
call (800) 806-4737; or fax (310) 366-6938.
-=-=-=-=-=-=-
A Coloring Activity Book for celiac children is available. Nancy
Patin Falini, the dietitian advisor for the Philadelphia group, is the
author of the book, which is entitled Celiac Disease: Me and the
Right Food Choices. It is aimed for children ages 5-7. It comes with
an instructional guide for parents and contains a great deal of
helpful information in dealing with your child's celiac problems. The
cost for one coloring-activity book with one instructional guide is
$14.75 including postage; quantity discounts are available. To order,
send a check or money order to: Mrs. Nancy Patin Falini, M.A., R.D.,
437 Sharpless St., West Chester, PA 19382. Please include your
address, phone number, and support group affiliation.
-=-=-=-=-=-=-
_Gluten-Free Living_ is a newsletter that began publication in
January. The July-August issue includes an article from Jax Peters
Lowell, author of _Against the Grain_, a popular and entertaining book
about dealing with celiac disease. The article is entitled "Talking
To Your Doctor (so he or she will take you seriously)". Like her
book, the article is both helpful and entertaining. All the material
in _Gluten-Free Living_ is cleared by four doctors, including Drs.
Joseph Murray and Alessio Fasano. All four doctors also contribute to
it. This newsletter has more than lived up to expectations. It comes
out every two months. Subscriptions are $29 for one year, or $49 for
two years. To order, mail a check payable to Gluten-Free Living, PO
Box 105, Hastings-on-Hudson, NY 10706. [Editor's note--we also get
this newsletter, and have found it well worth the cost.]
-=-=-=-=-=-=-
Dr. Alessio Fasano spoke to the Philadelphia group on March 24, 1996.
Here are some notes from that meeting, as recorded by Nancy Patin
Falini:
* Glucose tolerance, fecal fat, and D-xylose tests are not specific
indicators for celiac disease (CD). [In other words,
abnormalities detected by these tests might be caused by
something unrelated to CD.]
* Once a sibling of a celiac reaches 4-5 years of age, Dr. Fasano
recommends that they be screened for CD.
* In the USA, from 1991 to 1995 there have been only eight
scientific papers published on CD. Only two of these were
epidemiological (community/population) studies.
* Approximately 20% of children diagnosed with short stature from
an unknown cause have CD. During prepuberty often the only
symptom of CD is short stature. Growth hormone treatment will
not be effective if the cause of short stature is CD.
Consequently, endocrinologists need to be more aware of CD.
* Untreated CD during pregnancy can result in a neurological defect
in the unborn child, possibly resulting in a shorter [and lower
quality] life span.
-=-=-=-=-=-=-
Testing for CD: Dr. Karoly Horvath of Pediatric Gastroenterology &
Nutrition Laboratory in Baltimore answers questions about CD testing.
Here are some excerpts from this article:
* Celiacs on a gluten-free (GF) diet that ingest 0.3 grams/kg body
weight of gluten as a single dose show immunological changes
(cellular immunity) in the small intestine within five hours.<4>
However, to detect serological changes in the blood takes more
time. If you have not been diagnosed with CD, are on GF diet,
and are going to have serological tests to see whether you have
CD; then Dr. Horvath's lab recommends ingesting 5-20 grams of
gluten per day for at least two months prior to the tests. Note
that a single slice of bread has about 2-3 grams of gluten.
* There are several advantages in using a laboratory experienced
with the celiac serological tests. Technically the tests are
more reliable, and the internal and external controls of the
tests are better established. Also, labs that specialize in CD
serological testing have larger numbers of positive and negative
samples to validate their tests.
* Dr. Horvath's lab recommends that first degree relatives
(parents, siblings, and children) of celiac patients undergo
serological screening tests for CD. Since CD can manifest
(become active) at any period of life, they recommend that these
tests be repeated every 2-3 years for first degree relatives, or
sooner if gastrointestinal symptoms consistent with CD are
observed.
* A biopsy may be inconclusive in a *small percentage of patients*,
due to so-called "patchy lesions" in the duodenum. What this
means is there are both normal-looking spots with finger-like
villi and pathologic spots showing flattened mucosa. When CD is
suspected, the gastroenterologist should obtain several biopsies
from different spots of the whole duodenum. The examination of a
single biopsy specimen may increase the risk of false negative
diagnosis.
* The experience of the pathologist in the interpretation of
specimens is important. In centers specializing in CD the
gastroenterologist routinely reviews the specimen slides with the
pathologist.
* It is still possible for inconclusive results even with multiple
biopsies and interpretation of the specimens by an experience
pathologist and gastroenterologist. It takes time for the
changes to the mucosa to be evident. If a biopsy is done before
the changes are noticeable then the results may not be
conclusive. Such cases are rare, but may require a repeat biopsy
after a period on a higher-gluten diet.
* Serology (blood) tests may be inconclusive if the sample handling
was inappropriate (e.g., shipped for several days at room
temperature). Also, if a CD patient is IgA-deficient then only
the IgG antibody test will be positive. Dr. Horvath's lab
recommends further absorptive tests and/or an intestinal biopsy
for patients that are IgA deficient and have a positive IgG test.
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: :
: Excerpts from the Gluten Free Gang Support Group :
: ------------------------------------------------ :
: newsletter: May 1996 Mary Kay Sharrett, co-editor :
: Children's Hospital :
: 700 Children's Drive :
: Columbus, OH 43205 :
:.......................................................:
8th Annual Workshop: The Gluten-Free Gang's 8th annual celiac
workshop will be on Saturday, November 16th. This year's special
guest will be Jax Peters Lowell, the author of _Against the Grain_.
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