THE SPRUE-NIK PRESS
Published by the Tri-County Celiac Sprue Support Group,
a chapter of CSA/USA, Inc. serving southeastern Michigan
Volume 7, Number 8 November/December 1998
**********************************************************************
...........................................
: What's Inside :
: ------------- :
: Miscellaneous Notes :
: Gluten-Free Pharmaceuticals :
: CSA Governing Board Report :
: Report from the CSA Conference :
: Celiac Disease--Then and Now :
: Research Review of Transgenic Foods :
: Serological Testing for CD :
: Review of Dermatitis Herpetiformis :
: The Hows and Whys of Celiac Disease :
: Neurological Complications :
: Partnering for GF Medications :
: Living With a Chronic Illness :
: Bread Machine Primer :
: Taste of India in GF Cooking :
: New Developments in GF Foods :
: CD and Bone Disease :
: A New Way of Eating :
: Traveling in the USA and Germany :
: Newsletter Roundup :
: What Do These Kids Have In Common? :
: 10 Ways to Keep Your Child Healthy :
: A Whole New Me! :
: Quinoa, Amaranth, and Buckwheat :
: Is CD a Partner? :
: Pharmaceutical Updates :
: The Importance of Family Testing :
: Recipe Page :
: Snickers Meringue Torte :
: Crunch-Ems Snack Mix :
:.........................................:
References
Disclaimer
Miscellaneous Notes:
--------------------
President's Corner: I hope all of you are getting prepared for the
upcoming Holidays. PLEASE be sure to stress a few things to whomever
is preparing the Holiday meals. Make sure the turkey is gluten-free
(GF); you might even offer to buy it yourself and bring it to them.
The turkey can NOT be stuffed with a gluten stuffing, if you are to
eat it. Take a few minutes and call each person making specific
dishes and tell them how they can make that dish GF. DO NOT eat the
filling from the pie and leave the crust--the crust contaminates the
entire pie. Make a GF desert to bring. If you are unsure about the
turkey, make yourself a cornish game hen, and bring it with you. Make
sure your family members understand how SERIOUS this is. Above all,
enjoy the holidays, but please stay GF.--Mary Guerriero
-=-=- -=-=-
Editor's Corner: "Technical difficulties", it said. I'm referring to
the notice you received INSTEAD of a Sprue-nik Press last month. My
reply is: Bah! Humbug! There were no "technical difficulties". No,
what you had were "editorial" difficulties; I just didn't get the job
done. I sort of let my "plate" of activities get a little overloaded
this fall, and as a result I was dropping balls left and right. I've
picked most of them back up now, and I hope to do a little better job
of keeping up with things from now on.
We've attempted to make up for last month's omission by sending you an
extra large Sprue-nik this time. You'll notice a plethora of articles
from the Sullivans (many, many thanks) covering recent meetings and
conferences. You'll also find a small truckload of articles and short
pieces from other newsletters, as I tried to get caught up with the
huge stack of newsletters I had from other groups. I failed, of
course; I still have another two dozen newsletters to get through yet.
Well, that'll give me something to do for the January newsletter.
--Jim Lyles
-=-=- -=-=-
You know you're a celiac if...
...your Chinese food order is always the same. "Plain white rice,
please!"
...at restaurants you spend most of your time in the restroom.
...your doggie bag contains your entire meal (except lettuce.)
...you've thrown a temper tantrum when your computer wouldn't
connect to: http://rdz.acor.org/lists/celiac/index.html
...you've ever been so hungry you could eat dirt.
...you've actually eaten dirt.
You know you're a celiac if...
...you didn't think this was very funny. --Diane Wright
Return to the Table of Contents
Gluten-Free Pharmaceuticals:
----------------------------
The following charts contain information from Heidi A. Pillen, Pharm.
D., of the Pharmaceutical Services at Beaumont Hospital, in southeast
Michigan. Our thanks go to Dr. Alexander, our physician advisor, for
providing us with this information:
Bulk-Forming Agents as of September 28, 1998
--------------------------------------------
Product: Metamucil
Manufacturer: Proctor & Gamble
Gluten-Free?: NO-wafers; YES-powdered form
Comments: Wafers contain wheat flour. All varieties/flavors of
powdered formulation are gluten-free.
- - - - - - - - -
Product: Citrucel
Manufacturer: SK-Beecham
Gluten-Free?: ?
Comments: They do not add glutens to product, but raw materials/
final product are not tested for presence of glutens.
- - - - - - - - -
Product: Unifiber
Manufacturer: Niche
Gluten-Free?: YES
Comments: No additional comments.
- - - - - - - - -
Product: Maltsupex
Manufacturer: Wallace
Gluten-Free?: YES
Comments: All Wallace products are gluten-free, but they are
unable to provide written confirmation.
- - - - - - - - -
Product: Fibercon
Manufacturer: Lederle
Gluten-Free?: ?
Comments: Not able to guarantee at this time. In process of
testing final product. Contents not yet verified.
- - - - - - - - -
Product: Fiberall
Manufacturer: Heritage Cross
Gluten-Free?: ?
Comments: Contains no wheat products, but does contain oat bran
that may contain trace amounts [of gluten].
- - - - - - - - -
Product: Konsyl
Manufacturer: Konsyl
Gluten-Free?: YES
Comments: Recommended by the Celiac Disease Foundation.
- - - - - - - - -
Product: Perdiem
Manufacturer: Novartis Consumer
Gluten-Free?: ?
Comments: Product not tested for the presence of glutens.
Antispasmodics as of August 17, 1998
------------------------------------
Generic Name: Atropine
Brand Name: NA
Manufacturer: Eli Lilly (0.4 mg tabs)
Usual Dose: 0.4-1.2 mg, every 4-6 hours
Gluten-Free?: YES
Comments: All Eli Lilly products are gluten-free.
- - - - - - - - -
Generic Name: Clidinium Bromide
Brand Name: Quarzan
Manufacturer: Roche (2.5 or 5 mg caps)
Usual Dose: 2.5-5 mg, 3-4 times daily
Gluten-Free?: YES
Comments: No additional comments.
- - - - - - - - -
Generic Name: Dicyclomine
Brand Name: Bentyl
Manufacturer: Hoechst-Marion (10 & 20 mg caps; 20 mg tabs)
Usual Dose: 80-160 mg/day, in 4 divided doses
Gluten-Free?: YES (all products)
Comments: No additional comments.
- - - - - - - - -
Generic Name: Glycopyrrolate
Brand Name: Robinul
Manufacturer: Wyeth-Ayerst (1 & 2 mg tabs)
Usual Dose: 1 mg, 3 times daily; or 2 mg, 2 or 3 times daily
Gluten-Free?: YES
Comments: No additional comments.
- - - - - - - - -
Generic Name: L-hyoscamine
Brand Name: Levsin, Levsin SL, Levbid
Manufacturer: Schwarz-Pharma (0.125 mg or 0.375 mg)
Usual Dose: 0.125-0.25 mg, 3 or 4 times daily; or 0.375-0.75 mg,
twice daily
Gluten-Free?: ?
Comments: SL product contains only corn-derived excipients, but
final product not tested for glutens. Inactive
excipients of other products not known.
- - - - - - - - -
Generic Name: Mepenzolate Bromide
Brand Name: Cantil
Manufacturer: Hoechst-Marion (25 mg tabs)
Usual Dose: 25-50 mg, 4 times daily
Gluten-Free?: YES
Comments: No additional comments.
- - - - - - - - -
Generic Name: Methscopolamine
Brand Name: Pamine
Manufacturer: Upjohn (2.5 mg tabs)
Usual Dose: 2.5 mg, 4 times daily
Gluten-Free?: ?
Comments: Excipients are gluten-free, but final product not
tested.
- - - - - - - - -
Generic Name: Propantheline Bromide
Brand Name: Pro-Banthine
Manufacturer: Roberts (7.5 & 15 mg tabs)
Usual Dose: 15 mg, 4 times daily
Gluten-Free?: YES
Comments: No additional comments.
Return to the Table of Contents
CSA Governing Board Report<1>
--------------------------
by Janet Y. Rinehart, past president, CSA/USA
I went to the CSA annual conference in Warwick, RI because I, as
President of CSA, needed to preside at the Governing Board meetings
and I wanted to learn even more about celiac disease (CD) and
dermatitis herpetiformis (DH), gluten-free (GF) products, and baking
tips. Also, I eagerly wanted to renew acquaintances with the celiacs
I have met over the 11 years I have been attending CSA conferences.
Yes, I had a very good time.
In honor of CSA's 20th birthday I was proud to announce, on behalf of
Region 3 Director Rosalie Jalbert, former Region Director Joanne
Hameister, and myself, the surprise presentation of a special
proclamation from the Governor of Rhode Island. [Lincoln Almond,
Governor of Rhode Island, proclaimed October 30th as "Celiac Disease
Awareness Day".]
Let me summarize actions of the Governing Board. Regarding the
generic new member packet, chairman Diane Paley reported that the
final draft was submitted to the Publications Committee and we were
awaiting corrections. Copies were given to the Governing Board and
observers. The Board voted to first print the text in Connections,
the special publication for CSA leaders. The generic new member
packet can be tailored to chapters and resource units, with pages for
local information as to restaurants, health food stores, local
products, etc. Also, a new tri-fold brochure has been developed where
blank sections can be filled in by the local group to show local
contacts, physician advisors, meeting times and place, etc. I am
grateful for the dedication and commitment of the Thrust (Education)
Committee to see this project to fruition.
The Board voted to reinvestigate products and publish a new
Cooperative Gluten-Free Commercial Products Listing. We ask
individuals and chapters to cooperate by sending to the CSA office
copies of new letters from food manufacturers. Any new folks
interested in helping with this project, please contact new President
Ruth Smith.
I reluctantly asked that the Celiac Disease/Diabetes project be
withdrawn from CSA back into the Houston chapter where it originated
because of frustration with the totally negative response from the
medical advisors to the proposed questionnaire and no forthcoming
suggestions or direction. A report will be submitted from the
committee along with resignations from the committee members. (The
committee will continue its work in the Houston chapter and will
cooperate with other groups/individuals.)
A committee will be organized to look into the current and future
governing structure of CSA. The Committee to Develop a Job
Description for Executive Director gave a written draft report.
[Current executive director] Leon [Rottmann] also submitted a report.
The work of the committee will continue at Ruth's direction.
During discussions about finances, we were glad to learn that a line
item for financial consulting services was added to the new budget for
financial consulting services monthly and at the end of the fiscal
year.
Regarding the Constitution/Bylaws, a section was revised (Article III,
Membership, Section 6. Expulsion and Removal) in order not to deny
anyone health information from CSA. Also, a new section was added to
deal with nonperformance of a leader's duties. Both sections were
approved at the Business Meeting.
The new officers are as follows:
President-Elect: Mary Schluckebier, Omaha NE
Past President: Janet Rinehart, Houston, TX
Recording Secretary: Ann Dodds-Frerichs, Boston, MA
Treasurer/Comptroller: Marge Campbell, Omaha, NE
Region 2 Director: Dean Cling, Kansas City, MO
Region 2 Member-at-Large: Latisha Mae Thomas, Leavenworth, KS
Region 4 Director: Daphne Ledford, Charlotte, NC
Region 4 Member-at-Large: Glenda Keyes, West Columbia, SC
Region 6 Director: Donna Beatty, Loveland, CO
Region 6 Member-at-Large: Margaret Eldorado, Tucson, AZ
Membership Chairman: Carol Clarke, Blythewood, SC
Future sites for the annual conference were decided: 1999 Atlanta,
2000 Albuquerque, 2001 Minneapolis, and 2002 Omaha.
Personally speaking...
When I was diagnosed, there were only two specialty food companies
catering to celiacs: Ener-G Foods and Dietary Specialties. I felt
quite fortunate then. However, now the number of vendors offering
gluten-free food has swelled to around 50. Eleven years ago I managed
to cook delicious recipes with Marion Wood's three cookbooks. Over
the years Bette Hagman, Carol Fenster, The Gluten-Free Baker's Sandra
Leonard, and a number of others have added to the quality and variety
of gluten-free cooking possibilities. I could not do without CSA's
Lifeline and Handbook, Jax Lowell's Against the Grain, the new Sully's
Living Without magazine, Ann Whelan's Gluten-Free Living, the CELIAC
e-mail list on the Internet, Stoke's Pharmacy's Guide Through the
Medicine Cabinet, and the many chapter newsletters we diligently
publish. Also, I was invited to write my personal story in a new book
showing the many faces of CD, Coping with Celiac, The Great
Masquerader, edited by Aileen Bennett. You really don't know how
fortunat e we all are to have all these resources available now. I
personally thank our food vendors, resource/cookbook writers, leaders,
knowledgeable medical community, and other supporters for helping us
to cope with the world of celiac disease.
I have enjoyed my two-year tenure as President of CSA. I have tried
to facilitate some of the ideas that celiacs have told me they need.
When I changed computers this month, I noticed I had answered over
1000 E-mails, mostly from celiacs. Fortunately, I do like to write
letters. I believe personal contact is the most satisfying way to
help other people, on both sides. It is very gratifying to hear hope
in a person's voice at the end of an orientation session when the
person called in despair or confusion. I thank you for the
opportunity to serve you. Please give your support to our new
president, Ruth Smith of Chicago.
Return to the Table of Contents
Report from the 1998 CSA Conference
-----------------------------------
by Tom & Carolyn Sullivan
Celiac Disease--Then and Now
----------------------------
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.
Return to the Table of Contents
Research Review of Transgenic Foods
-----------------------------------
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.
Return to the Table of Contents
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.
Return to the Table of Contents
Serological Testing for Celiac Disease
--------------------------------------
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.
Return to the Table of Contents
Review of Dermatitis Herpetiformis
----------------------------------
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.
Return to the Table of Contents
The Hows and Whys of Celiac Disease
-----------------------------------
Friday, Oct. 30, 1998, 2:00 PM, Concurrent Session, Z. Myron Falchuk,
M.D., Gastroenterologist, Harvard Medical School and Chief, Clinical
Gastroenterology, Beth Israel Deaconess Medical Center
Dr. Falchuk believes that CD exists in an individual from birth but
only manifests itself with the ingestion of gluten. To diagnose it
requires someone to think of it as a possibility.
The causes of treatment failure are either poor adherence to the GF
diet or it is not CD. If it is not CD, it could be tropical sprue,
immune deficiency, starvation, giardia, or an allergy to soy protein
or cows milk. Other considerations could be lymphoma, poor
gallbladder emptying, refractory sprue or DH.
It has been demonstrated in the laboratory that CD tissues can be
grown in vitro, that is, in solution, and that cortisol, an immune
suppressant, blocks the gluten effect on the tissues.
The disease mechanism for CD is a specific immune cell reaction in a
genetically-susceptible host. The HLA B8 and HLA DR3 genes are
present in 75 to 90% of CD patients while only being observed in 20 to
30% of normal individuals.
Return to the Table of Contents
Neurological Complications Associated with Celiac Disease
---------------------------------------------------------
Friday, Oct. 30, 1998, 3:15 PM, General Session, Walter R. Thayer,
M.D., Gastroenterologist, Private Practice
One study of 16 patients with flat biopsies indicated various
neurological diseases, some of which had developed while on the GF
diet. A second study published in the Feb. 1996 _Lancet_ described
unexplained neuropathy in which half the patients had CD. If
neurologic diseases are diagnosed, CD should also be suspected.
The Q&A session provided the following responses:
* There is nothing in the literature to indicate a relationship
between myasthenia gravis and autism.
* Besides the link between CD and diabetes, CD also affects the
pancreas by preventing the release of the CCK hormone in the
intestine. Taking pancreatic enzymes may be required.
* There is no relationship between CD and heart disease.
* The studies have shown mixed results with neuropathy and the GF
diet. Some improve, many don't and some develop the neuropathy
with the diet.
* The CD gene could be either dominant or recessive but is probably
multi-factorial. What is inherited is the RISK, not the DISEASE.
And it can be transmitted by only one parent.
* All post menopausal women should have a bone density test.
* There is no connection between CD and reflux disease. A full
stomach with constipation could be the reason.
* There is no connection between CD and pancreatic cancer but there
is between CD and duodenal and esophageal cancers because the
damage occurs right at the junction of the pancreas and the
duodenum.
Return to the Table of Contents
Partnering for Gluten-Free Medications
--------------------------------------
Saturday, Oct. 31, 1998, 9:00 AM, General Session, Steve W.
Plogsted, Pharm. D., Clinical Pharmacist, Nutrition and Support
Services, Columbus Children's Hospital
Cross-contamination in drugs is highly unusual because of the
stringent sterile conditions of manufacture and the fact that a single
line manufactures a single product.
A local, independent pharmacist is the best, particularly if the
pharmacy also does other wellness activities like blood pressure
testing, flu shots, compounding, or selling durable medical equipment.
BEFORE a doctor visit, discuss your condition with your pharmacist and
obtain a list of GF products that you can take with you to the doctor
for him to choose an acceptable one if needed.
When you know that a product is GF, have your doctor write DAW
(Dispense As Written) on the prescription to insure that no
substitution is made.
When ordering prescriptions by mail, write DAW on each mail order AND
call the mail order house customer service department to discuss your
condition and have them put DAW on your patient profile so that it
appears on every order they fill for you. This should be done with
each and every mail order firm you use, particularly new ones.
To obtain information on any prescription capsule used in the USA,
call 1-800-CAPSULE.
One study at Duke University (1994) showed some positive reactions for
gluten in some products. Those results have NEVER been duplicated and
the companies have stated that their products are GF. (Perhaps these
were false positives?)
The chances of changing the starch in prescriptions from a corn base
to a wheat base is very, very low because the price of corn is so low.
Talc is a mineral and contains no gluten.
One website for information on gluten in medications is
http://www.geocities.com/HotSprings/Spa/2679.
Return to the Table of Contents
Psychological Aspects of Living With a Chronic Illness
------------------------------------------------------
Saturday, Oct. 31, 1998, 10:00 AM, Concurrent Session, Lauren Jacobs
Komack, Clinical Social Worker, Private Practice and a Celiac
Ms. Komack highly recommends Jax Peters Lowell's book, _Against The
Grain_, as the basic information resource.
She strongly urges every celiac to Ask, Ask, Ask. No one knows any
more about the disease than the celiac themselves.
Celiac Disease is a PERMANENT new way of life.
As a celiac, be sure you understand who has the illness. Only the one
who has it, has it. All others must let go since they can't live
another persons life.
CD is different for a child before or after they acquire language.
Before language a child simply grows up in a GF world and doesn't know
any different. After language, it is a take away in their life.
Return to the Table of Contents
Ten Miracles of CSA
-------------------
Saturday, Oct. 31, 1998, Noon, Leon Rottmann, Executive Director
The ten miracles of CSA include the support provided by everyone,
members, professionals and contacts but most particularly by the
celiacs themselves for both self managing their own lives and disease
and still helping other celiacs.
Return to the Table of Contents
Don't Loaf Around: A Primer on Making GF Bread in Your Bread Maker
-------------------------------------------------------------------
Saturday, Oct. 31, 1998, 1:00 PM, Concurrent Session, Beth Hillson,
Elizabeth Reed, Judy Vale, The Gluten-Free Pantry
In food chemistry, very little applies to gluten free baking. We are
working with a bowl of rice which will be dry with too little liquid
and mushy with too much liquid. Bread needs a smooth silky
consistency. Salt adds flavor but too much will kill yeast. Yeast
needs a very warm environment. Turn on oven to 200, turn off and put
product inside to rise. Judy has put it on an electric dryer or on a
car hood.
If bread mushroomed over the top of the bread machine or sank, there
was too much water, it rose too quickly and there was no structure to
hold it up. This varies from day to day with humidity, etc. Sneak up
on amount of water, adding one-half amount, then little by little
adding more. [Ed. note: This principal (sneaking up) is used in
microwave cooking, as well.]
The V20 Zojirushi ($199.00) makes a horizontal loaf, is flexible, has
two paddles, is top-of-the-line machine. Kitchen Pro manufactures
Regal ($99.00). The S-15 Zojirushi did not knead as well.
Special tools of the trade include sheets of plastic wrap, spraying
with cooking spray and using a scooper. Beth smoothes the top of the
loaf with her hands over the top of a sheet of sprayed plastic wrap,
Sometimes she even forms a bagel with the french bread and pizza mix
between two sheets of sprayed plastic wrap. She freezes individual
pizzas between sprayed plastic wrap. The cold does not hurt yeast.
Beth puts flat bread on foil sprayed with olive oil on a grill for 3
min. one side and 2 min. the other. Oil the grill before baking or
it can be baked in a 450 oven.
Products that have a lot of dairy and butter (fat) are softer in
texture. Country Bread is stiffer. Stir to the bottom or the result
could be a wet top and crumbly bottom. Gluten Free Breads only
require one rise as it takes 1/3 the time that developing gluten takes
in regular bread. If it is punched down for a second rise it does not
rise fully the second time.
Tips for making bagels include: a long time to rise, a silky
consistency and forming between two sheets of sprayed plastic wrap
held in the hands. You can steam them by heating water in the
microwave and then putting the bagel in.
Breads from the Gluten-Free Pantry are lactose-free if there is no
milk in them, e.g., Country French Bread Mix.
Egg Replacers include: 1 egg=2 egg whites; 1 egg=1 Tbsp. flaxseed
meal soaked in 3 Tbsp. warm water. Flaxseed contains omega oils, is
healthy but may be laxative. (Beth sometimes adds a second egg
equivalent.) Soy lecithin adds texture to bread. Carol Fenster says
it is the great emulsifier.
Beth uses an electric knife to slice bread after it is cool. For more
hints contact the company at 800-291-8386 to get their sheet, "The
Bread Doctor Is In".
Return to the Table of Contents
Basics for the Gluten-Free Diet: A Question and Answer Review Session
----------------------------------------------------------------------
Saturday, Oct. 31, 1998, 1:00 PM, Concurrent Session, Leon Rottmann,
Executive Director and Mary Schluckebier, President Elect
The goal of the GF diet is to make a celiac a whole person through
nutrition and by learning to substitute. Dr. Rottmann noted that a
new term, "clinical diet", is beginning to be used when referring to
the GF diet. It was noted as a term used in the licensing of clinical
nutrition specialists.
Ten years ago the preponderance of medications contained gluten.
Return to the Table of Contents
Putting the Taste of India in Gluten-Free Cooking
-------------------------------------------------
Saturday, Oct. 31, 1998, 2:00 PM, Concurrent Session, Hushad M.
Pareth, President, The Tamarind Tree
Spices are used in Indian cooking for 3 reasons: to improve the taste
of the food; to utilize the healing properties of the spices; and to
increase the shelf life of the product. Any particular spice has two
components: taste and "hotness". To remove the "hotness" from a
dish, add yogurt or sour cream.
Because Indian foods are usually quite fatty, salty and spicy, The
Tamarind Tree has reduced the fat by 1/2; the salt by 2/3; and the
spice by 1/2 to better fit the American taste.
The packaging process for each product is the same as that used for
the US military field rations, vacuum pack and seal fully cooked.
This means the products have an extended shelf life, are useful for
travel or office lunches and can be eaten either right from the
package or heated.
Mr. Pareth does NOT recommend ordering lentil chips in an Indian
restaurant because they are probably fried in the same oil as the
bread.
Return to the Table of Contents
New Developments in Gluten-Free Foods
-------------------------------------
Saturday, Oct. 31, 1998, 2:00 PM, Concurrent Session, Sam Wylde, III,
President, ENER-G Foods, Inc.
New Products will include: #4720 Pretzels (from Israel), #4152 Bread
Sticks, #4060 Sour Dough Baguette, #4721 Gourmet Crackers (Plain,
Sesame, Garlic)
Pizza Shells will be available to health food stores in a fancy box
(2) or from the company in a plain box (3) + shipping.
Regarding ingredients used in gluten-free foods (to hold things
together): Xanthan gum is going up in price, because less food grade
xanthan gum is being produced. Most guar gum comes from India.
Alternatives include: Ener G potato flour, which is pre-gelatinized
(cooked), or using twice as much gelatin.
Regarding the use of guar gum, the CFR 21 (Code of Federal
Regulations) restricts the amount to 5/10 of 1 % by weight. The scare
about Guar Gum was caused by people taking straight doses to induce
diarrhea which resulted in anorexia or bulimia.
The package wrap for the two-slice package of bread is polyester
coated with glass. If it gets wrinkled, then the glass can be broken
and oxygen can get in. Any bread that is frozen will be drier. His
bread will spoil in about a week after opening. Most flours keep
three years except those with oil. He suggests adding 1/2 cup apple
fiber for 1/2 cup brown rice flour. You can add fiber with rice bran,
rice polish, apple fiber, bean fiber, or methylcellulose.
Sunday, Nov. 1, 1998, Concurrent Sessions:
Is the Diet Managing Me or Am I Managing the Diet?, Mary McLaughlin,
RD, New England Medical Center
Eating Out With the Hotel Chef, Serge Wechseler, Executive Chef
Packing It Up
Obtaining Diet and Ingredient Information on Foods and Judging Its
Accuracy
Reading Labels and Working With Commercial Food Companies
Basics on Adapting Favorite Recipes to Gluten-Free
Getting Adequate Nutrition and Promoting Growth on the Gluten-Free
Diet
----------------------------------------------------------------------
Sunday was food day. The general session and the closing session were
conducted by Mary McLaughlin. Except for the usual session with the
hotel executive chef, the concurrent sessions were conducted by
graduate students from Tufts University School of Nutrition. The
presentations and handouts were prepared primarily from the CSA/USA
educational materials. Several of the students attempted to live on a
GF diet for a period of time and/or attempted to eat out as a celiac.
Enthusiasm and interest were high on the students part, information
presented was basic and offers to research any attendees questions
were made. It was an interesting experiment. The audience was not
homogenous enough for it to succeed dramatically but it was a good
effort. With long range planning, attendee participation with advance
knowledge of the type of session and advance questions, it could be an
interesting educational tool for everybody involved on a periodic
basis. (NOTE: The students were in a serious accident on the way to
the hotel. Car demolished. Nobody hurt but everybody shook up and
nervous.)
Return to the Table of Contents
CD and Bone Disease
-------------------
by Dr. Dhanwade Rao
summarized by Carolyn Sullivan
Dr. Dhanwade Rao, the head of the Dept. of Bone and Mineral
Metabolism at Henry Ford Hospital, spoke at our October meeting. What
follows are some highlights of his talk:
The bone density test is based on a comparison to a 25 year old
"normal" person.
[Author's note: The T Score is the number of standard deviations (SD)
an individual is above or below the Young reference value (expected
bone mass at age 20-25.) The Z score is the number of standard
deviations that an individual is above or below the Age-Matched
reference value. So the Z score compares your results with the norm
for someone your age.
If the T-Score is below the mean by: Then you have:
------------------------------------ --------------
1 SD Normal bone density
1-2.5 SD Osteopenia
more than 2.5 SD Osteoporosis
Reference: Grosse Pointe Physicians X-Ray Center, P.C.]
Celiac disease (CD) is not readily recognized. Undiagnosed celiacs
lose bone mass without knowing it. It is a peculiarity of bone that
you can never put bone back but can only prevent further bone loss,
once you reach a certain age.
A second aspect of bone disease is vitamin D deficiency. We make
vitamin D when our skin is exposed to sunlight. It turns out that
lighter skin makes more vitamin D than darker skin. Plus in this
country, most of the milk is vitamin D enriched. In contrast, India
has a population with darker skin that does not make as much vitamin
D, and vitamin D is not added to food products like it is here.
Therefore vitamin D deficiency has been more common in India.
However, in the last five years, studies say 20-50 % of northern
Michigan people have vitamin D deficiency, in spite of fortified milk.
This is a double whammy because it lowers absorption of calcium and
causes parathyroid excess which leaches calcium from bones.
About 20% of those who present with bone disease, when tested, are
also found to have CD.
Osteomalacia, softening of the bones, is associated with vitamin D
deficiency. Unlike osteoporosis, it is generally reversible.
There are two good sources of calcium in supplements in the USA:
calcium carbonate and calcium citrate. Other sources such as calcium
phosphate are not recommended, because the body doesn't absorb them
well. The recommended daily intake [for post-menopausal women]of
elemental calcium is 1500-2000 mg per day, taken in two or three
doses. Note that a cup of milk has 280-300 mg of calcium.
Extra vitamin D is needed if your calcium intake is low, so that you
better absorb the calcium you take in. 800 units of vitamin D per day
are recommended [for post-menopausal women].
The types of bone density tests are: 1. Ultrasound of the heel and
2. Dual Energy Absorption. It is reasonable for all celiacs to
consider having one done. [author's note: This includes both men and
women.]
Bone density tests for women should be done after age 50 but Dr. Rao
doesn't know when for celiacs and/or children. [Dr. Alexander said
that children who grow like weeds on a GF diet are probably OK but
every new adult celiac should get one and consider repeating it every
3 to 5 years.]
Both Dr. Rao and Dr. Alexander believe that every celiac should have
a bone density test. Bone density tests are now paid for by Medicare
according to the Bone Density Act of 1998.
Once diagnosed, what drugs can or cannot be taken? There are:
Calcitonin (a nasal spray), Evista (like Estrogen) and Fosamax
(Alendronate, which has very poor absorption, goes only to bone, and
has no toxicity.) It is unclear whether they work in CD because, when
drugs are tested, 1000 mg. calcium and vitamin D are also given. His
suspicion is that it doesn't. Fosamax's main side effect is
heartburn.
Evista is a new type of estrogen replacement. The downside is that it
may result in hot flashes and there is some concern about blood clots
in the legs. Compared to hormone replacement therapy (HRT) there is
no significant difference [regarding prevention of osteoporosis].
HRT, calcium, and Fosamax used together can have a scientific benefit
because each works differently.
Hormone Replacement Therapy (HRT) can be started up to age 75 when the
risk over benefit dividing line is reached. At age 50, the risk of
breast cancer for those on Estrogen is 1 in 6; those not, 1 in 8.
Lifetime risk without HRT is 1 in 10. One can take it forever but it
needs 7 years for full efficacy. There will be breast tenderness if
you've been off of estrogen for 10 years before starting HRT, but it
gets better with time. Start with a lower dose and build up.
Dr. Rao recommends checking Vitamin D and calcium levels to find out
if anything is needed for the individual. New studies only have a few
people in them. [Dr. Alexander said that some studies have shown
30-40% of Celiacs have osteoporosis or osteopenia.]
Dr. Alexander stated that he rarely sees B12, folic acid or other
vitamin deficiencies and is amazed at the accommodation that the gut
makes.
Dr. Rao thinks the concern about aluminum in Tums is way overblown
and that carbonated beverages may increase absorption of calcium.
Caffeine and alcohol decrease bone density.
Regarding the relationship of arthritis to CD, there is an "old saw"
that people with osteoarthritis do not get osteoporosis and vice versa
but it is not always so.
Return to the Table of Contents
A New Way of Eating
-------------------
by Carolyn Randall
summarized by Carolyn Sullivan
Carolyn Randall is the editor of the Recipe Box column that appears in
Lifeline, CSA's quarterly newsletter. Carolyn spoke to our group at
the November meeting. Here are some highlights of her talk:
Carolyn's message to everyone is to "Celebrate a new way of eating".
When eating out, she carries a small spray bottle of seasoned rice
vinegar (1/2 water, 1/2 vinegar) but said you could make your own if
it is strained to prevent clogging of the spray.
She uses the CSA Restaurant Card because that way the chef comes out
to talk to her and she is not classified as a "finicky" eater. She
talked to the chef at the CSA conference and he suggested three
things: (1) call when the restaurant is not busy; (2) call 2 or 3
days ahead because if they are using fresh foods they need two days.
The chef also said that all chicken is marinated and so it must be
ordered ahead and lobster tail may be breaded so call ahead; (3) talk
to the kitchen manager or chef and tell them what you want.
When traveling, Carolyn checks restaurants with AAA guides and
suggests keeping a notebook of restaurants which lists the date you
checked it out.
Don't be afraid to leave a restaurant if they are not serving you and
your needs.
2-slice packets of bread from Ener-G are good for travel. For a
combination trip on land and sea to Alaska on Holland America, she
will take some pop top cans of chicken, tuna, etc. - just in case.
Audience members reported good experiences with Holland America.
Carolyn takes her own pot holders and utensils (bright orange) to
family get togethers. That reminds them of cross-contamination
possibilities.
Her favorite new small appliance is a rice steamer. She has an Oster,
about $30, and loves it. For brown rice she uses 1 1/2 times as much
water as is called for. A member suggested a microwave rice cooker
from Target or Meijer at $10.<3>
Carolyn left us with smiles and a new zest for being celiac.
Bruce Richardson, son of the late and beloved TCCSSG member Toni
Richardson, was also in attendance. He agreed with Carolyn but also
cautioned that chefs in a busy kitchen may use the same utensil in
several dishes.
Return to the Table of Contents
Traveling in the United States and Germany
------------------------------------------
by Carolyn Sullivan
A daughter who was studying in the United States and a family coming
to visit her from Germany formed the setting for an exchange of
information about finding gluten-free (GF) food in the U.S. and in
Germany. They wanted to know where to buy GF products in the U.S.A.
and I wanted to know how to travel in Germany. I could supply a list
of local health food stores, the C.S.A. Handbook, a food guide, Bette
Hagman's cookbooks, and other material. But I think I learned much
more, for many German people understand and speak some English and I
speak no German at all.
Since the rate of diagnosis of celiac disease (CD) is much higher in
Germany than in the U.S. and the area of the country is much smaller,
they have one main group, the German Celiac Society, Deutsche
Zliakie-Gesellschaft E.V. (DZG). It has a paid membership of about
11,000 and approximately 7,000 others including doctors, dietitians,
hospitals, etc., who receive their publications. (Cost of membership
is roughly $40 U.S.)
Their Executive Board is a five-person volunteer board and each has
specific duties and oversight responsibilities. The DZG office is in
Stuttgart and has four full-time employees. The Office Contact Person
is: Sofia Beisel, Filderhauptstrasse 61, D-710599, Stuttgart, Tel:
0711/45 45 14, Fax: 0711/45 678 17. They have recently added a web
site: http://home.t-online.de/home/dzg.e.v./, which includes a page
in English for travelers.
They publish a Newsletter, DZG Actuell, four times a year. A major
food guide comes out once a year with updates in the newsletter. The
Food Guide is about the size of an oversize paperback and I was
cautioned to take it with me if shopping in stores as those "hidden
sources of gluten" occur in Germany as well as here. Some ingredients
may not be listed because it is not required. "Reading is no help."
Sausage is one of the many things that must be checked.
They believe in a strict diet but do allow dietetic wheat starch
(=0.3% protein) if the histology of the patient's small intestine
bowel is okay. This decision is up to the personal physician.
Interestingly, the DZG does not agree totally with celiac societies in
other European countries in the area of foods allowed. Does this not
sound somewhat familiar?
But what is the traveler to Germany to do? Call the DZG office in
Stuttgart and ask for a contact person in the area where you plan to
be. This person may be able to give you local information. Go
shopping at a Reformhaus (Health Food Store). Reformhaus is a
historical name for stores with dietetic foods. Look for products on
the shelf including Dr. Shr, Glutano and Bi-Aglut.
The manufacturers listed are from the St. John's web site at
http://rdz.acor.org/lists/celiac/vendors.html: Drei Pauly
Reform+Diaet GmbHH, Hammermuehle Diat GmbH, Muhle Hubmann
Minderleinmuehle and Naturkkosmhle are GF. Poesgen Ditbckerei is a
company that uses low level wheat starch in most of its products.
The "no wheat" symbol in Germany guarantees no gluten in a product.
The translation for wheat starch is: Prima-Weizenstarke) which means
0.5% protein. Some bakeries use dietetic wheat starch (Dietatische
Weizenstarke) which has only 0.3% protein and uses the symbol (+) on
the list.
When eating in a restaurant in Germany, use the following Restaurant
Card:
......................................................................
: :
: Ich spreche leider kein Deutsch. :
: :
: Ich habe eine Allergie gegen Weizen, Roggen, Hafer, Gerste, Dinkel :
: und Grunkern und darf nur glutenfrei essen. :
: :
: Wenn ich eine Speise mit einer kleinen Menge davon esse (z.B. :
: Suppen, Saucen, Panade), mub ich mit Ubelkeit und Durchfall :
: rechnen. Bitte informieren Sie den Kchenchef, damit mein Essen :
: kein solches Getreide enthalt und ich meine. :
: :
: Gesundheit nicht gefahrde. :
: :
: Ich danke Ihnen. :
:....................................................................:
English translation:
......................................................................
: :
: I do not speak German unfortunately. :
: :
: I have an allergy against wheat, rye, oats , barley, spelt and :
: Grunkern. :
: :
: If I eat a small quantity of it (e.g. soups, sauces, breading) :
: I can get sick. Please inform the cook, so that my meal does not :
: contain this type of grain and I stay healthy. :
: :
: I thank you. :
:....................................................................:
A few words you should know: FORBIDDEN FOODS: Weizen=wheat,
Roggen=rye, Hafer=oats, Gerste=barley, Dinkel=spelt,
Buchweizen=buckwheat, Malz=malt. Be careful of the word, KORN, which
is a generic noun for grain, corn, cereal, rye. PERMITTED FOODS:
Mais=corn, Reis=rice, Hirse=millet, Kastanienmehl=chestnut flour,
Soja=soy, Sesam=sesame, Kartoffeln=potatoes, Milch=milk, Eier=eggs,
Fleisch=meat, fisch=fish, obst=fruit, gemuse=vegetable,
Fette/Ole=fats, oil, Tee=tea, Saft=clear juices.
This article was written with information from the DZG and St. John
web sites, and with help from Dr. Heide Mecke, one of the leaders of
the DZG, and her family, Christoph, Barbara, Almut and Stefan; and
Ulricke Meyer, a newly diagnosed celiac in our group, who can spend
her first Celiac Christmas in Germany with confidence that food will
not be a problem. Celiacs are helping Celiacs.
Return to the Table of Contents
Newsletter Roundup
------------------
compiled by Jim Lyles
This section contains excerpts from newsletters produced by other
celiac groups.
............................................................
: :
: Excerpts from _Celiac Connections_ :
: ---------------------------------- :
: June 1998 Katie Marschilok, editor :
: Nov./Dec. 1998 Capital District Celiac Support Group :
: PO Box 621 :
: Glenmont, NY 12077 :
:..........................................................:
What Do These Children Have In Common?
--------------------------------------
* Until his sixth month of life, T.S. was a happy healthy baby.
Once he started eating solid food his appetite grew, yet his
height stayed the same. His weight dropped but his belly started
protruding. He slept on his stomach or clung to his mother more
than 20 hours a day. He cried almost all the time. At one point
he was hospitalized with dehydration and severe electrolyte
imbalances. His doctors and parents were afraid he might die.
* A.M. made it to 32 lbs. by his first birthday. He was the
picture of robust health until age 5. His growth slowed then
until about age 7, when it stopped altogether. He had a poor
appetite, suffered from bouts of chronic constipation and had
frequent nose bleeds.
* A.M.'s brother, J.M., was a very irritable, emotional child.
Many nights after dinner he would sit on the couch complaining
that his stomach hurt. His height and weight were quite normal
for his age. He was diagnosed with diabetes at age 8. He was
treated for esophagitis and asthma.
* A.M. and J.M. had a sister, C.M. She missed 1/4 of her
kindergarten year because of bouts of pneumonia, bronchitis, and
asthma attacks. She was 40 inches tall and 40 lbs. in weight
for several years.
* S.O. was treated for iron deficiency anemia with iron
supplements from age 4 to age 11, with no success. He had
frequent skin problems and, to his distress, his younger brother
surpassed him in height.
* L.S. at age 12 was hospitalized for nausea, vomiting, and
diarrhea that led to severe dehydration. The hospital physicians
had no idea what was wrong with him.
* R.F. at age 14 had been 4 feet, 4 inches tall and 65 lbs. for a
very long time.
* L.K. developed diabetes at age 2. He was pale and thin, with
wildly fluctuating blood sugars that were very difficult to
control or predict.
* I.R. was referred to an endocrinologist because of growth
failure. He had no symptoms of illness that he was aware of.
* K.L. had skin rashes that would come and go, that did not
respond well to any of the medications that the doctors had
prescribed. Her size was very normal.
* N.A. felt fine, but was quite short in stature for his age.
* M.Y. had a very bloated abdomen. As she grew, her arms and legs
were getting thinner.
So what do the above children have in common? All have been diagnosed
with celiac disease and are members of our group. [It is of special
interest to note all the different and in some cases seemingly-
contradictory symptoms of celiac disease in the above children. Only
a few would be recognized as celiacs from the "classic" celiac
symptoms.--ed.]
-=-=- -=-=-
Celiac Disease in the News:<4> Two political opponents share
appetites, gluten-free that is. Jane M. Swift (Republican) and
Warren E. Tolman (Democrat) were candidates for lieutenant governor.
Though divided by party affiliations, they are united on the food
front as both are celiacs. Tolman was diagnosed 5 years ago when he
was 33 years old. He is 6'4" tall. His picture should be distributed
to any health professional who is only looking for people with short
stature. Swift was diagnosed during her late 20's and discussed
strategies for eating on the campaign trail.
Return to the Table of Contents
.........................................
: :
: Excerpts from _Celiac Update_ :
: ----------------------------- :
: Fall 1998 Janet Thomas, editor :
: CCA Fredericton Chapter :
: 100 Epworth Circle :
: Fredericton, NB E3A 2M6 :
: CANADA :
:.......................................:
10 Ways to Keep Your Celiac Child Healthy
-----------------------------------------
10. Get your family and friends on your side: Support of family and
friends is incredibly important, especially during that first
confusing year. If they get comfortable with your child's diet,
life becomes much simpler. My brothers and neighbors are
sensitive to Michael's diet and call to find out what they can
serve so all the kids are eating the same thing. One of my
sisters-in-law even bakes with rice flour whenever we go there for
a meal, and we go there a lot!
9. Find a doctor that you like: Our family doctor and pediatrician
are both terrific. Michael and I are comfortable enough to ask
them anything, no matter how insignificant it seems.
8. Be active in your local [support group]: There's no better way to
learn how to cope with the diet than by talking to others who have
followed it for many years.
7. Don't let anyone convince you that your child will "grow out of
it": You can't imagine how many times I've heard this from
parents of celiacs that are now in their 20's. It CAN'T happen,
ever! Some teenagers do not have reactions to gluten when they
cheat on their diets, but that is just a temporary condition.
Teenage celiacs who eat gluten damage their bowels, and eventually
suffer a reaction.
6. Be prepared for some accidents: No one is perfect. Celiac kids
and their parents make mistakes from time to time. Get used to
it! [But always learn from your mistakes. We are doomed to
repeat those mistakes we forget about--ed.]
5. Always read the ingredients: Sometimes those mistakes are caused
by not reading the ingredients. The rate that companies change
product ingredients is astonishing. I've been caught by changes
in hot dogs, pop, snack foods, and chocolate bars. What I've
learned is this: stick to fruits and veggies.
4. Plan ahead: The key to keeping your child's life normal and
ensuring that he/she feels included is planning. Always call
parents who are having birthday parties to see what they are
serving for food and in the treat bags. Always talk to teachers,
coaches, and leaders about the food being served at special
events. Be prepared to be the one who ALWAYS has to bake.
3. Talk to your child's caregiver or teacher a lot: If your child is
in daycare or school, there is no one more important to talk to.
My experience with teachers has been very positive. They have all
accommodated Michael's diet quite cheerfully and never once have
made him feel different.
2. Buy a bread machine: My bread machine is the most precious
appliance in the house. I made some pretty sad-looking loaves of
bread before my loving husband bought me the bread machine. It is
totally dedicated to Michael (no wheat flour allowed) and produces
perfect loaves every time!
1. Teach your child to take responsibility for his/her diet right
from the beginning: When Michael was a 4-year-old he delighted
the staff at Scoop and Save because he could rhyme off all the
forbidden grains and ingredients. When he was 6 years old, he
made a presentation to his first grade class about celiac disease
during Celiac Week. At 8 years of age he would politely refuse a
treat from a new friend's parent, explaining his diet. At 10
years old he is now pretty much in control, making his own
decisions about what he eats. He's made one or two bad decisions
which resulted in a couple of miserable days. Needless to say
those bad decisions are getting fewer and fewer. The point is, I
can't be there all the time now. He needs to be able to do this
himself.--Janet Thomas
Return to the Table of Contents
....................................................
: :
: Excerpts from _CSGC News_ :
: ------------------------- :
: April 1998 Tanis Collard, editor :
: Celiac Support Group for Children :
: 11 Level Acres Rd. :
: Attleboro, MA 02703 :
:..................................................:
A Whole New Me! by Trisha Gould
-------------------------------
(Trisha is a sophomore at Mount Pleasant High School in Providence,
RI. She is involved in the Natural Helper Program, likes science and
tennis, and is a certified Safe-Sitter in babysitting. Trisha was
diagnosed in 1997 with celiac disease and wrote the following paper
for her school. We commend her on a great job and admire her courage
to tell her story.)
The 1996-1997 school year had just begun. Entering Mount Pleasant
High School, in Providence, as a freshman, I was both excited and
nervous. I had decided to attend Mt. Pleasant instead of Classical
because my health was declining. I was experiencing chronic abdominal
pain, which was so bad I was unable to function normally. Having had
ulcers in the past, I was told to eat plain crackers when I wasn't
feeling well, and they made me feel worse. I was taking many
medications, including those for pain. Still, the pain remained and
worsened.
Following a traditional Italian Christmas Eve dinner (which included
anything and everything one could possibly eat), my abdominal pain was
the worst it had ever been. I was admitted to the hospital because I
was unable to eat or sleep. A small bowel biopsy was taken after
Christmas.
The results of the biopsy suggested either inflammatory bowel syndrome
or celiac disease (CD). A blood test confirmed the diagnosis; I had
CD. It is something I was born with, and does not have a cure. The
only treatment is a gluten-free (GF) diet. No longer was I allowed to
eat anything I wanted to. Ordinary pastas, breads, cereals, and even
cookies and cakes were off limits! The labels of the food I was to
eat must be read over and over and over again, to make sure it
contained no "hidden offenders" (such as malt) which contain gluten.
The two most distinct feelings I experienced were excitement and fear.
I was excited to finally know what was wrong with me. I was also
scared; everything in my life was about to change, forever. How was I
going to be able to go to dances, parties, the movies, and on dates
without driving myself crazy about what I was going to eat? For many
years I was able to go out with my friends and not worry about a
thing. Now, knowing I have CD, I must plan every step of my day,
before I step out of the door. When going out with friends, I must
know where we're going and where we are going to eat, so I can plan
what I will have or bring with me. The biggest concern I had was what
other people will think. At church, people stare at me because I
don't receive communion. It's impossible to tell everyone in the
parish my story so they understand.
Recently I went on an overnight trip with a few other students from
Mt. Pleasant to Camp Varnum in Narragansett. This was the first time
I was going on an overnight trip anywhere since I was diagnosed. A
lot of planning went into where I was going to cook and store my food.
Once I arrived everything ran smoothly. There were no problems. Even
though I had to make my own meals, I had a great time! Some of the
guys even helped me cook. I felt like there was nothing wrong with
me. I was extremely comfortable in the situation I was most worried
about. This June I will attend a week-long training program at Alton
Jones, similar to the one at Camp Varnum.
Many times I encounter people who sympathize for me. I don't feel I
need sympathy. There is no such thing as a perfect person; everyone
has their own flaws. One of my many flaws is CD, but like everything
else, with the help and support of my family and friends, I will
continue to live a "normal" life, whatever that means.
It is important to remember, no matter how bad you are feeling, there
is always someone worse off than you are. Look to friends and family
for support and hope when you need it. Differences make the
individual person stronger.
-=-=- -=-=-
Cains Foods: The following Cains products are gluten-free: all
natural mayonnaise, light reduced calorie mayonnaise, reduced fat
mayonnaise dressing, fat free mayonnaise dressing, tartar sauce, sweet
relish, kosher dill pickles (whole, chips, spears, and sandwich cuts),
and sweet cucumber pickles (chips and sandwich cuts). The distilled
vinegar and modified food starch are derived from corn. For more
information, call 508-772-0300.
Return to the Table of Contents
..........................................
: :
: Excerpts from _Gluten-Free Friends_ :
: ----------------------------------- :
: Fall 1998 R. Jean Powell, editor :
: Winter 1998 Montana Celiac Society :
: 1019 So. Bozeman Ave. #3 :
: Bozeman, MT 59715 :
:........................................:
Quinoa, Amaranth, and Buckwheat
-------------------------------
These notes came from a talk by Cynthia Kupper, CRD, CDE, CEO of GIG
of North America, on June 6, 1998, at the Montana Celiac Society
Convention. They were transcribed by R. Jean Powell.
Quinoa, amaranth, and buckwheat are pseudo-cereals. There are two
branches in the family tree of grasses: monocots and dicots. Wheat,
rye, oats, and barley are monocots [as is rice]. Quinoa [pigweed],
amaranth [an herb], and buckwheat [an herb] are dicots.
Quinoa, amaranth, and buckwheat produce round seeds similar to mustard
seeds. Quinoa is, in fact, a member of the mustard family while
amaranth is a member of the rhubarb family. So if you can't eat
quinoa, then you also can't eat mustard; and if you can't eat amaranth
then you also can't eat rhubarb. [Why WOULD anyone eat rhubarb,
anyway? I consider it to be a noxious weed--ed.] They belong to the
same genetic families. These plants are very different from the
grains that celiacs must avoid.
I did a lot of research on pseudo-cereals which indicates that these
three grains are gluten-free (GF). They have been tested for gluten
using protein assays. Studies on quinoa from California and Australia
all come back the same: These grains do not contain gluten. That
should be scientific proof that they are GF. The challenge is finding
a source that is not contaminated.
As an example, quinoa from Great Harvest in California is grown in
Bolivia in an area where nothing else is grown: the altitude is too
high and it is too arid. But quinoa does great there. The only crop
grown for hundreds of miles is quinoa. The seed is shipped to
California and it is the only thing the Great Harvest plant processes.
That should be a safe source.
However, the quinoa grown in Colorado is grown in a rotation crop.
One year they plant potatoes, the next year plant legumes, the
following year wheat, and then the following year quinoa. So there is
plenty of potential for contamination.
Q: Is it less of a risk dealing with whole grains than dealing with
flours? Whole grains look very different from each other.
A: Absolutely. If you look at stalks of millet and sorghum, they
look like yellow mustard seed. If you grow your own seeds, sort
them, and then grind your own flour, there is a definite decrease
in the risk of cross-contamination.
Q: What about canola oil and guar gum? Some food lists recommend
that these be avoided.
A: Canola oil comes from the germ of the seed and has no protein in
it. It's highly unlikely that you would get any protein in the
oil. Canola oil comes from rapeseed, which is a dicot and should
be GF.
Some people with CD are mistaking their reaction to canola oil or
guar gum as being from gluten contamination. Some people tend to
be very sensitive to these foods. I think these are the reasons
why they have been put on several "foods to avoid" lists. If you
use canola oil and have no problems with it, there is no reason
not to go on using it.
Guar gum has a natural laxative effect just like sorbitol and
manitol, which are sugar alcohols. If you eat enough sugar-free
candy, you're going to have diarrhea, but not because it's got
gluten. It is important to realize that not only can we have
gluten contamination in our diet which might cause
gastrointestinal symptoms; we may also just be sensitive to
certain foods. Because one person doesn't tolerate a food very
well does NOT mean that it should be avoided by everyone else.
-=-=- -=-=-
NutThins are a new gluten-free cracker from the Blue Diamond Company
which everyone agreed were scrumptious. Ask your health food or
grocery store to stock them; the number to call is 800-842-3645. You
can order them yourself by the case: $24 for 12 4.5-oz. boxes. [I
don't know about shipping; call them first.-ed.] They come in three
flavors: pecan, hazelnut, and almond. The ingredients are: rice
flour, pecan/hazelnut/almond meal, safflower oil, salt, natural
pecan/hazelnut/almond flavor, and natural butter flavor. Write to:
Golden Walnut Specialty Foods, 3200 16th Street, Zion, IL 60099-1416.
-=-=- -=-=-
Gifts of Nature is a new specialty food store which mills its own
gluten-free (GF) flours, then blends them for mixes: breads, muffins,
pancakes, cakes, cookies, pizza crusts, even crepes. Their products
are produced in a GF environment. All of the mixes are simple to
make, requiring only eggs, oil, and water. (The brownies, cakes, and
cookies require shortening.) They also sell a variety of bulk GF
flours, xanthan gum, vanilla and almond flavors, cereals, pasta,
Pamela's cookies, and other products. The three sisters who own and
operate Gifts of Nature share an intolerance to gluten, so they are
committed to improve the GF lifestyle.
For a brochure and mail-order catalogue, write to: Gifts of Nature,
Inc., Box 309, Corvallis, MT 59828; or call: 406-375-9429.
-=-=- -=-=-
Is Celiac Disease a Partner? by Dr. Lloyd Rosenvold, 1992
Down syndrome (DS) is a genetic birth abnormality which occurs in
about 1:700 live births. The genetic defect is situated on chromosome
#21 and at birth these children usually have 47 chromosomes instead of
the normal 46.
DS infants suffer from weakness, misshapen small heads, and mental
deficiencies. Most do well to have an IQ as high as 50. Many die at
a young age but some live on into their 30's or 40's. General
development is much slower than that of normal children. The facial
appearance is Mongoloid and for that reason DS is often referred to as
mongolism. Other congenital defects and skeletal deformities are not
unusual. There has been no treatment of value for DS patients except
to provide good custodial and nutritive care in order to make the best
of a disappointing situation.
It has been found that patients with Alzheimer's disease (AD),
sometimes called senile dementia, often have genetic abnormalities,
also on chromosome 21. Naturally this has raised the question: Are
AD and DS in any way related? It has been found that of those DS
individuals who live until in their 30s or 40s, the incidence of AD is
greater than it is in the general population.
An Australian physician, Chris Reading, together with his associates,
evaluated the family histories of more than 2000 patients over a
number of years. Among his many discoveries he found that 17 of 18
children with DS were also gluten intolerant (and in the 18th case he
suspected it was also true).
Dr. Reading found that by placing the DS children on a gluten-free
(GF) diet fortified with various vitamins (including B1, niacin, and
B12) and minerals (particularly zinc), he found that the DS children
had made "...rapid and measurable improvement in height, head
circumference, weight, mental and motor development, and general
health."
I recently saw a DS infant whose father has gluten intolerance and
whose mother had a close direct ancestor with AD. This suggests that
Dr. Reading's findings may have some validity.
I recommend that all DS children be tested for gluten intolerance, and
placed on a GF diet if any is found.--Dr. Lloyd Rosenvold, Hope,
Idaho
Return to the Table of Contents
...........................................................
: :
: Excerpts from the Greater Philadelphia CS Support Group :
: ------------------------------------------------------- :
: newsletter: July 1998 Phyllis J. Brogden :
: 6318 Farmar Lane :
: Flourtown, PA 19031 :
:.........................................................:
Pharmaceutical Updates
----------------------
* Evista (generic name: raloxifene; made by Eli Lilly and Co.) is
a new drug used to prevent postmenopausal osteoporosis in women.
It can be used by some women who cannot or do not wish to take
estrogen to prevent osteoporosis. Evista does not increase the
risk of uterine or breast cancer. It should not be used by women
with a history of forming blood clots of the leg, lung, etc. It
cannot be used with estrogen. Evista appears to be slightly less
effective than estrogen replacement therapy in preventing
postmenopausal osteoporosis. Evista is Gluten-Free.
* Raxar (generic name: grepafloxacin; made by Glaxo Wellcome,
Inc.) is a new drug used as a broad spectrum antibiotic to treat
bacterial infections such as bronchitis, pneumonia, and some
sexually-transmitted diseases. Raxar is a "high power"
antibiotic which should be reserved for serious, life-threatening
infections. Raxar is Gluten-Free.
* Zagam (generic name: sparfloxacin; made by Rhone-Poulenc Rorer
Pharmaceuticals, Inc.) is a new drug used as a broad spectrum
antibiotic to treat bacterial infections such as pneumonia and
bronchitis. Zagam is also a "high power" antibiotic which should
be reserved for serious, life-threatening infections. Zagam is
Gluten-Free.
* Trovan (generic name: trovafloxacin; made by Pfizer, Inc.) is a
new drug used as a broad spectrum antibiotic to treat bacterial
infections such as pneumonia and bronchitis, acute sinusitis,
serious abdominal and pelvic infections, diabetic foot
infections, urinary infections, and prostatitis. Trovan is also
a "high power" antibiotic which should be reserved for serious,
life-threatening infections. Trovan is Gluten-Free.
* Centrum and Centrum Silver are NOT Gluten-Free according to
Lederle Pharmaceuticals (800-762-4672). Both have traces of
gluten due to cross-contamination during processing.
* Zantac and Ranitidine are both Gluten-Free according to their
respective companies. Zantac is made by Glaxo (800-248-2100).
Ranitidine is a generic equivalent for Zantac made by Novopharm
(800-361-3313). Note that there will be many other generic
equivalents for Zantac; don't assume they are gluten-free just
because Zantac is. (This information is dated Oct. 20, 1997.)
-=-=- -=-=-
Kitchen Basics GF Chicken and Beef Stock: This is a great new product
that will save you time. These are real liquid stocks, made from
meat, vegetables, and herbs; old-fashioned stocks without the
old-fashioned work. They contain no gluten, no soy, no yeast, no MSG,
no fat, and lowered sodium content. These stocks are shelf stable and
will last unopened at room temperature for up to two years. When
opened, they will keep for up to two weeks in the refrigerator. You
can freeze the stock after opening to keep it longer. Currently Leo
Dick & Sons has agreed to ship these stocks, by the case, anywhere in
the lower 48 states. Call 800-779-3425 to place an order. [These are
available at Meijers and Krogers in southeast Michigan.-ed.]
Return to the Table of Contents
........................................................
: :
: Excerpts from the Healthy Villi Celiac Support Group :
: ---------------------------------------------------- :
: newsletter: Fall 1998 Melinda Dennis, editor :
: 95 Orchard St., #2 :
: Somerville, MA 02144 :
:......................................................:
A New Oat-based Fat Substitute is on the market. It will be available
within a year under the name Nu-Trim. Researchers claim that it is a
healthy fat substitute purported to help lower cholesterol levels.
Celiacs should avoid this product because it contains oats, which
CSA/USA does not recommend for a gluten-free diet. Other fat
substitutes on the market include Oatrim and Z-Trim; these contain
oats and/or barley and are also inappropriate for celiac
consumption.<5>
-=-=- -=-=-
All Arizona Beverages are gluten-free, including their iced teas,
lemonades, punch drinks, sparkling sodas, and virgin cocktails. This
comes from a letter dated Aug. 4, 1997; and was confirmed by phone
call on Aug. 20, 1998. Call 800-TEA-3775 for more information.
........................................................
: :
: Excerpts from _KC Gluten-Free Advocate_ :
: --------------------------------------- :
: July 1998 Joe & Janna Denison, editors :
: Greater Kansas City Chapter of CSA/USA :
: 7911 Little Lane :
: Pleasant Valley, MO 64068-9187 :
:......................................................:
Applebees: I contacted Tracy at Applebees Research and Development
department, at its corporate office building in Overland Park, Kansas.
Tracy looked up the many ingredients in various menu items that I
thought might be appropriate for celiacs. The following entre is
acceptable: Fish (whitefish or salmon), steamed vegetables, steamed
red potatoes or plain rice (for those concerned, the seasoned rice
pilaf has MSG in the spices). You can also order the steamed
vegetable platter, or the chicken or shrimp stir-fry if you order it
without the soy sauce. None of the salad dressings are okay. Avoid
the seasoned potatoes, as they are cooked in the same oil used for
breaded items.
....................................................
: :
: Excerpts from the San Antonio CS Support Group :
: ---------------------------------------------- :
: newsletter: Sep. 1998 Lynn Rainwater, editor :
: 1023 Cloverbrook :
: San Antonio, TX 78245-1604 :
:..................................................:
World Experience Teenage Student Exchange at 2440 S. Hacienda Blvd.,
Suite 116, Hacienda Heights, CA 91745, has 20 years experience
offering 15-18 year old high school students a school attendance and
living experience in a foreign country for a semester or an academic
year. They now have a program for celiac exchange students, because
their president has a celiac niece. The first celiac exchange
student, a high school junior named Eva Sipos from Hungary, will be
arriving this month and staying with a family in Kansas City.
Host families provide GF room and board, parental supervision and
guidance, explanation of our culture, and family responsibilities and
experiences. If you are interested in learning more about the celiac
student exchange program, call World Experience at 800-633-6653, fax
them at 626-333-4914, or e-mail them at WEworld@aol.com.
Return to the Table of Contents
......................................................................
: :
: Excerpts from the Westchester CS Support Group :
: ---------------------------------------------- :
: newsletter: July 1998 Leslie Elsner and Sue Goldstein, editors :
: 9 Salem Place :
: White Plains, NY 10605 :
:....................................................................:
The Importance of Family Testing, by Fran Monteith
--------------------------------------------------
When our daughter Lauren was diagnosed with celiac disease (CD) in
1996, we were told that CD is genetic, and that my husband Greg and I
should be tested. Since neither of us had any symptoms at the time,
we put this information in the back of our minds as a "someday" thing
we must do, and went on with our lives.
Our next child, Danny, was born a robust and healthy baby; but soon
after we began introducing cereals and whole foods into his diet, we
discovered that he, too, had CD. Still, Greg and I procrastinated
having ourselves tested. We moved from New York to New Jersey, and
with reasons of new medical insurance, yearly deductibles, and every
other excuse under the sun, we delayed the testing further.
Our focus changed when the Westchester support group announced a
conference that would include serum testing of first-degree relatives
as part of the University of Maryland prevalence study. Now we had no
excuse. We attended the conference in September [1997], and as we
waited in line for our blood to be drawn, Greg and I chided each
other: "It's going to be you." "No, its going to be you!" I was
five months pregnant with our fourth child, and was so sure it wasn't
me that I placed a wager on Greg's blood test results.
On the day I was discharged from the hospital after giving birth, I
received my blood test results. I had elevated IgG and IgA levels,
and would need to be biopsied for CD. My biopsy was inconclusive, and
I'm being followed to see what develops. But this was only the
beginning. Being one of nine children myself, I had to call all of my
siblings, and my parents, and ask them to please consider being
tested. It took some coaxing, and [getting past] a lot of "It can't
be us, we're all so healthy." But the next time the Westchester group
conducted a blood screening, seven family members came.
Lo and behold, three of my family members had positive blood test
results, and follow-up biopsies clinched the diagnosis of CD. My dad
is 72 years old, 6 feet tall, weighs well over 200 lbs., and was
feeling well. My older sister and my mother were also completely
asymptomatic. Yet they all have CD.
Recently, my father-in-law was diagnosed unexpectedly with CD while
having another procedure done during endoscopy. Needless to say, we
had been surprised to find CD on both sides of my family, but we were
now amazed to find it on my husband's side of the family as well.
The point I want to make is that once a family member has been
diagnosed, please encourage all first-degree relatives to be serum
tested. Now my father's brother, who has been ill for years, is
starting to wonder if this is the answer to many of his health
problems. He has agreed to be tested. Several of my cousins are
piecing together their own health stories, and are getting tested. My
brother, though his antibodies were negative, is highly symptomatic;
he is being biopsied this summer. The ball is rolling. And maybe
many lives will be saved.
-=-=- -=-=-
Mr. Spice has a delicious selection of sauces that work well with all
your favorites. They contain no salt, cholesterol, sugar,
preservatives, sodium, MSG, sulfites, dairy, or HVP. They contain
diabetic-approved, kosher ingredients. Try them all! Their sauces
include garlic steak, ginger-stir fry, honey barbecue, honey mustard,
sweet and sour, Hot Wing!, Tangy Bang!, Thai peanut, and Indian curry.
Also available are new varieties of ready-to-eat flavored popcorn.
Return to the Table of Contents
References
----------
<1> "Report of the CSA Conference", by Janet Rinehart, from the CELIAC
Listserv archives on the Internet, posted November 19, 1998. To
obtain a copy on the internet, go to
http://maelstrom.stjohns.edu/archives/celiac.html and click on
"November 1998, week 3."
<2> "Identification of tissue transglutaminase as the autoantigen of
celiac disease", Dieterich W, Ehnis T, Bauer M, et al., _Nat.
Med_ 1997; 3:797-801
<3> See also "Recipe Box", _CSA/USA Lifeline_, Fall 1998, vol. XVI,
no. 4, pg. 17
<4> From an article by Julie Jette, appearing in the _Berkshire
Eagle_, Sep. 28, 1998.
<5> "Oat Derivative May Put Junk Food On Health List", David L.
Chandler, _The Boston Globe_, Aug. 25, 1998.
Return to the Table of Contents
Recipe Page
-----------
**********************************************************************
Snickers Meringue Torte
Warning: You may very well gain weight just from reading this recipe.
Save yourself! Skip past it, while you still can!
Torte:
1/2 cup GF flour mix**
1 tsp. GF baking powder
1/8 tsp. salt
1 cup butter (no substitutes), softened
1-1/4 cups granulated sugar
6 egg yolks
1 tsp. GF almond or vanilla extract
1 cup ground toasted almonds
4 oz. unsweetened chocolate, grated
6 egg whites
Grease and flour two 9x1-1/2 inch round baking pans. Stir together
the flour, baking powder, and salt. Set the mixture aside.
Beat the butter in a large mixing bowl with an electric mixer on
medium speed about 30 seconds. Add the granulated sugar and beat
until fluffy. Beat in the egg yolks and almond/vanilla extract. Add
in the flour mixture and beat on low speed until well combined. Stir
in the almonds and chocolate. Wash and dry the beaters thoroughly.
Place the egg whites in a large clean bowl. Beat with an electric
mixer on high speed until stiff peaks form (with the tips standing
straight).
Fold in about one-fourth of the beaten egg whites to lighten the
batter, then fold in the remaining egg whites. Pour the mixture into
the prepared pans.
Bake at 350 degrees F for 35-40 minutes or until a toothpick inserted
in the center comes out clean. Cool for 5 minutes on wire racks;
remove from pans; then allow the cake layers to cool completely.
Meringue:
2 egg whites
1 tsp. GF vanilla extract
1/4 tsp. cream of tartar
2/3 cup granulated sugar
Grease the bottom and sides of an 8x1 inch round cake pan. Line the
bottom with waxed paper and grease the waxed paper. Set the pan
aside.
Place the egg whites and vanilla in a medium mixing bowl and beat with
an electric mixer on low speed until frothy. Add in the cream of
tartar and beat on medium speed until soft peaks form (with tips
curled at the top). Gradually add the granulated sugar, beating at
high speed until stiff peaks form.
Spoon the mixture into the prepared pan, smoothing the top with the
back of a spoon to even the surface. Bake at 300 degrees F for 45
minutes. Turn off the oven. Let the meringue dry in the closed oven
for 1 hour.
Filling & Icing:
11 oz. GF cream cheese, softened (1 8-oz. plus 1 3-oz. package.
I used 8 oz. GF Neufchatel and 3 oz. GF cream cheese)
1 cup butter or margarine
1 tsp. GF vanilla extract
2 lbs. sifted powdered sugar
3/4 cup chopped Snickers candy bars (2 regular-sized bars)
4 oz. semi-sweet chocolate, melted and cooled
Place the cream cheese and butter/margarine in a large bowl. Beat
with an electric mixer on medium to high speed, until light and
fluffy. Beat in the vanilla. Gradually beat in the powdered sugar,
beating the mixture to a thick spreading consistency.
Transfer 1-3/4 cups of the mixture to a smaller bowl and stir in the
chopped Snickers bars; reserve this mixture for the filling.
Beat the melted chocolate into the remaining cream cheese mixture for
the icing.
To Assemble:
Place one cake layer on a cake plate. Top it with half of the
filling. Peel the waxed paper off of the meringue and set the
meringue on top of the filling. Spread the remaining filling on the
meringue. Place the second cake layer on top. Frost the top and
sides of the assembled cake with the icing. Chill in the refrigerator
for at least 4 hours before serving.
Makes 16 generous servings. Taste testers thought you could get 24 or
32 servings from this recipe.
This recipe comes to us from Vicki Lyles, who adapted it from "Angelic
Chocolate Torte", in _Holiday Cooking 1998_, pg. 18.
**********************************************************************
Crunch-Ems Snack Mix
6 Tbsp. butter
2 Tbsp. GF worcestershire sauce
1-1/2 tsp. garlic powder
dash cayenne pepper (careful!)
3 cups popped popcorn
6 cups Rice Crunch-Ems (from Health Valley-similar to Rice Chex)
3 cups puffed corn (Arrowhead Mills cereal*)
Melt the butter and mix in the seasonings. Toss the mixture with the
cereals. Bake at 250 degrees F for 1 hour, stirring every 15 minutes.
Note: You need 12 cups of cereal, popcorn, etc. Consider using
peanuts, GF pretzels, whatever your heart desires!
*I'm not overly thrilled with Arrowhead Mills puffed corn as a
breakfast cereal;, it's a bit chewy. But it is excellent in this
snack mix. It gets crunchy and very tasty. I'm planning to buy it
just for this recipe from now on.
This recipe comes to us from Wendy Wark, who posted it on the CELIAC
e-mail list on June 19, 1998. (See http://maelstrom.stjohns.edu/
archives/celiac.html and click on "June 1998, week 3".)
**********************************************************************
** GF flour mix:
6 cups white rice flour
2 cups potato starch (NOT the same as potato flour)
1 cup tapioca starch (also called tapioca flour)
**********************************************************************
Return to the Table of Contents
Tri-County Celiac Sprue Support Group Officials:
------------------------------------------------
Physician Advisor: Thomas Alexander, M.D.
Pediatric Advisor: Robert Truding, M.D.
Dietitian Advisor: Dorothy Vaughan, R.D.
President: Mary Guerriero
Vice President: Sue Gentilia
Past President: Diane Morof
Finance Committee: Tom Sullivan
Secretary: Pam Murphy
Newsletter Editor: Jim Lyles
Contributing Editors: Tom & Carolyn Sullivan
Disclaimer:
-----------
All recommendations, information, dietary suggestions, menus, shopping
guide suggestions, medical updates, miscellaneous articles, and
recipes in this newsletter are intended for the benefit of our
members, readers, and the general public. No liability is assumed by
the Tri-County Celiac Sprue Support Group or any of its members.
Information in _The Sprue-nik Press_ has been approved by our
physician and dietitian advisors. Individuals should consult with
their physicians and dietitians before following any medical or
dietary recommendations in _The Sprue-nik Press_.
Original material used in _The Sprue-nik Press_ is placed in the
public domain for the benefit of all celiacs. The information is not
copyrighted to facilitate the easy exchange of celiac information.
Feel free to reproduce any portion of this newsletter, unless it
specifically states otherwise. All we ask is that you indicate where
the information came from.
_The Sprue-nik Press_ is published by the Tri-County Celiac Sprue
Support Group (TCCSSG), a local chapter of CSA/USA located in
southeast Michigan. Members receive this newsletter, a shopping
guide, and a new member packet full of articles and useful
information. Mail-in subscriptions are welcome. For subscription
information, send a note to Mary Guerriero.
Return to the Table of Contents