THE SPRUE-NIK PRESS
Published by the Tri-County Celiac Sprue Support Group,
a chapter of CSA/USA, Inc. serving southeastern Michigan
Volume 6, Number 4 May 1997
**********************************************************************
..................................................
: What's Inside Search For :
: ------------- ---------- :
: Miscellaneous Notes . . . . . . . . . -1- :
: Help Promote Celiac Awareness . . . . -2- :
: Tips from the Membership . . . . . . . -3- :
: Pediatric GI Practice Attuned to CD . -4- :
: Relatively Speaking . . . . . . . . . -5- :
: Digestive Disease Week, 1996 . . . . . -6- :
: Newsletter Roundup . . . . . . . . . . -7- :
: Recipe Page . . . . . . . . . . . . . -8- :
:................................................:
References
Disclaimer
Miscellaneous Notes:
---------1----------
Dextrin/Maltodextrin Update: In our last newsletter we wrote, "Note
that maltodextrins and dextrins can come from a gluten source, so
avoid using them unless the source is known to be GF." However, it
appears that these two ingredients should be discussed separately.
Dextrin is an incompletely hydrolyzed starch. It is prepared by dry
heating corn, waxy maize, waxy milo, potato, arrowroot, WHEAT, rice,
tapioca, or sago starches, or by dry heating the starches after: (1)
Treatment with safe and suitable alkalis, acids, or pH control agents
and (2) drying the acid or alkali treated starch.[1] Therefore, unless
you know the source, you must avoid dextrin.
Maltodextrin is prepared as a white powder or concentrated solution by
partial hydrolysis of corn starch or potato starch with safe and
suitable acids and enzymes.[2] Maltodextrin, when listed on food sold
in the USA, must be (per FDA regulation) made from corn or potato.
This rule does NOT apply to vitamin or mineral supplements and
medications.[3]
Also, Donald Kasarda Ph.D., a research chemist specializing on grain
proteins, of the United States Department of Agriculture, has been in
contact with the companies that manufacture maltodextrins. He found
that all maltodextrins in the USA are made from corn starch, using
enzymes that are NOT derived from wheat, rye, barley, or oats. On
that basis he believes that celiacs need not be too concerned about
maltodextrins, though he cautions that there is no guarantee that a
manufacturer won't change their process to use wheat starch or a
gluten-based enzyme in the future.[4]
[Thank you to Carolyn Sullivan for researching this issue and
providing the information and references.-editor]
-=-=-=-=-=-=-
Regarding Prescriptions: If you call the pharmaceutical house and
find out that their product is GF, make sure that the prescription is
filled from the same source. Be aware if you are getting a generic
equivalent. To ensure that you don't get a generic equivalent, have
your doctor write D.A.W. (dispense as written) on the prescription.
--Regina Kukielka
-=-=-=-=-=-=-
Hospitals give generic medications. You might have to convince them
to give you the medication from the correct source, even with
something like non-prescription pain medication.--Regina Kukielka
-=-=-=-=-=-=-
Did You Notice? TCCSSG got a great write-up in the _Detroit News_
recently. A two-page article appeared in the "Accent" section of the
April 14th, 1997 edition of the paper. The article was based on
interviews conducted with group members at our March meeting. It was
well-written and accurate, just the sort of thing you really hope to
get into the mainstream press! For those of you with internet access,
click here.
-=-=-=-=-=-=-
Diabetic College Students can participate in an e-mail-based
discussion list specifically for college and high school diabetics
(age 17 and older only). To subscribe to this free service, send an
e-mail note to MAJORDOMO@LIST.SJCME.EDU, with no subject, containing
only one line:
SUBSCRIBE CSW-DIABETES
The list is managed by Bob LeBlanc (bob@mint.net or bob@somtel.com.)[5]
Return to the Table of Contents
Help Promote Celiac Awareness
--------------2--------------
How can Celiacs in the U.S. get the necessary attention of the
medical, business, and governmental communities we so desperately
seek?
A few short years ago many European countries were experiencing the
same frustrations. Today, things are dramatically better. Most have
gluten-free (GF) products readily available; doctors are knowledgeably
looking for Celiac Disease (CD) in patients; school children are being
tested for CD when they first enroll in school; McDonald's sells GF
Big-Macs.
What made the difference was a series of serological screening
studies. They concluded, beyond a reasonable medical doubt, that 1 of
every 300 in the general population is a celiac. These tests showed
that there was a lucrative market in CD; and money speaks.
Since CD is genetic, those of us in the U.S. of European descent
should test to the same ratio. This means that there could be more
than a half-million celiacs in the United States.
The technology used by the Europeans to do these studies is even more
reliable today. Dr. Alessio Fasano and Dr. Karoly Horvath,
University of Maryland School of Medicine (UMSOM), conducted a small
scale serological study in the U.S. recently. This study showed
approximately the same results as those in Europe.
UMSOM has established the Center for Celiac Research, with Drs.
Fasano and Horvath as medical directors. They have set-up a design
for a comprehensive study, in cooperation with several medical centers
throughout the U.S., to establish the prevalence rate of CD in this
country. The main ingredient missing to implement this three-year,
$600,000 study is money. Grant monies from federal, state, or local
governments are just not readily available, primarily due to the lack
of interest in a "rare" disease such as CD.
This is why we are putting forth this letter of support. Now is the
time to put our money and whatever other resources we may have on the
line. Now we can do something to make things better for ourselves,
our children and those celiacs of the future.
We need your commitment to help fund this momentous undertaking. If
we pledge and contribute what we are able, we can make it happen.
Please show your commitment by filling out the attached form and
return as indicated. We also need for you to assist us in getting the
word out to those who are not members of TCCSSG.
For more information about the fund-raising effort, contact
Kirk Gardner by phone (410) 328-4400, or fax (410) 328-6817.
I think it is important to definitively establish the incidence of
Celiac Disease in the United States.
NAME _________________________________________________________________
ADDRESS ______________________________________________________________
CITY __________________________________________ ST _____ ZIP _________
I pledge $____________ total, to be paid in three equal payments over
the three years of the study.
- OR -
Enclosed is my check for $____________ made payable to the UM
Foundation - Center For Celiac Research.
My employer has a matching charitable contribution program:
Yes ____ No ____
I understand my pledge or contribution will be used to support this
study at the Center For Celiac Research; University of Maryland School
of Medicine and that my contribution is tax deductible. These funds
are being managed by the UM Foundation.
As the new century nears, wouldn't it be great to be on the verge of a
new era of celiac recognition and lifestyle that we helped to make
happen? Thank you in advance for your participation.
Send your check or pledge directly to UMSOM, at this address:
Center For Celiac Research
University Of Maryland School Of Medicine
29 S. Greene St., Rm. 120
Baltimore, MD 21201
Return to the Table of Contents
Tips from the Membership
-----------3------------
from the April 14, 1997 meeting
compiled by Carolyn Sullivan
Here are some pearls of gluten-free (GF) wisdom from the membership,
as reported at our last meeting:
1. Take commercially-available GF Blueberry Muffin Mix and make flat
cakes out of it. It freezes well and travels well. For a tasty
variation, add dried cherries to the mix.
2. Soup can be frozen in single-serving amounts using 1-1/2 cup
Rubbermaid containers.
3. Keep a small size can of GF tuna and a fork with you at all
times.
4. Dietary Specialties carries Bi-Aglut Cracker Bread and Bi-Aglut
Penne (a type of pasta).
5. When making pizza shells, you can avoid "soggy" crust by baking
the shell without toppings for 1/2 the time listed, then adding
the toppings and baking for the remaining time.
6. Add baked potatoes to soups, chili, and other dishes, to add
nutrition and make them more filling.
7. To reduce fat in bread and muffin recipes, substitute an equal
amount of applesauce for half of the oil, butter, or shortening
called for in the recipe.
8. For lower fat, higher fiber meals, cook more lentil and bean
dishes in place of meat.
9. Time-saver: In the 3rd Bette Hagman book (_The Gluten-Free
Gourmet Cooks Fast and Healthy_), there are several shelf-stable,
dry mixes listed which can save you time. For example, she has a
dry mix for making cream soup, which can easily be changed to
mushroom soup. When a recipe calls for a can of soup, you can
easily make up a batch from the mix.
10. Vacation Tip: GF biscotti (whether you buy it or make it
yourself) is a good bread substitute that lasts a long time if
kept in a sealed container.
11. When making bagels from GF Gourmet Mix, add dried fruit. It
seems to help preserve the bagels.
12. When eating in restaurants, bring your own salad dressing, or use
lemon as a substitute for dressing.
13. When ordering a hamburger at a restaurant, always check to make
sure it is 100% beef. (Most are, but not all.)
14. Bake bread in small pans or freeze it in small quantities.
15. A small piece of rice bread can often be used for a communion
wafer if it is agreeable with the priest and discussed with him
beforehand.
16. Store flours in the freezer or refrigerator to prevent bugs from
appearing in them.
17. Attend support group meetings as often as you can.
18. Sweet rice flour is also called glutinous rice flour.
("Glutinous" refers to its sticky properties; sweet rice flour
does NOT have gluten in it.)
19. A lot of recipes improve with buttermilk added: e.g., pancakes.
See _Joy of Cooking_ for more information.
20. El Peto in Kitchener, Ontario (Canada) has numerous GF products.
They have a really good soup concentrate. Their chicken soup
concentrate is excellent, and with added GF noodles it makes a
great treat for kids. For more information call (519) 748-5211
or send an e-mail note. [Thank you to Judy Phelps for providing
these details.]
21. For airline travel, always order a GF meal (but also take your
own GF food just in case). Be sure to commend airlines that do a
good job.
Return to the Table of Contents
Pediatric Gastroenterology Practice Attuned to Celiac Disease[6]
-------------------------------4--------------------------------
Stuart H. Berezin, MD
summarized by Sue Goldstein
Stuart H. Berezin, M.D., is a Pediatric Gastroenterologist at
Westchester County Medical Center, Valhalla, NY, and an Associate
Professor at New York Medical College. On April 16th, Dr. Berezin
spoke about the Reemergence of Celiac Sprue in the Hudson Valley, at a
roundtable discussion held during the first annual Hudson Valley
Childrens Hospital Conference at West Point, NY, sponsored by the
Office of Continuing Medical Education of New York Medical College.
Dr. Berezin stated that there had been typically one or two children
diagnosed with Celiac Disease in his group pediatric gastroenterology
practice in past years, but in the last year, nine children were
diagnosed, ranging in age from one year to 20 years old. Its
incredible because there has been such a marked increase in the number
of patients weve been diagnosing with Celiac Disease. We had seen
some articles that indicated that Celiac Disease in children is
decreasing in frequency, but this hasnt been our experience at all.
One of the things that has been so fascinating to Dr. Berezin, and
one of the reasons the groups physicians wanted to do the roundtable
discussion is that there has been such a diverse presentation of
symptoms. Weve had a few children who presented with just abdominal
distention -- no weight loss and no diarrhea -- basically healthy
appearing children who proved to have Celiac Disease. We've had
children in the hospital who were admitted for neurological problems,
such as loss of developmental landmarks. One of these children
additionally had microcephaly (abnormal smallness of the head). After
an extensive neurological evaluation, we were subsequently asked to
see the child only because the child was having some mild problems
with diarrhea and vomiting. It was not felt that these were the
childs primary problems, but it turned out the child had Celiac
Disease. All the problems reversed on the gluten-free diet, including
the microcephaly and the gastrointestinal problems, and the child
started developing normally neurologically.
Dr. Berezin stated that the groups pediatric gastroenterologists have
become much more attuned to Celiac Disease. Weve all been so amazed
this past year, and its been an education for us. We now do the
screening antibodies testing on any child that comes in with any
symptom that in any way could be attributed to Celiac Disease.
Actually, weve been surprised ourselves with the diagnosis of Celiac
Disease in a lot of patients. This has also had a positive effect in
increasing awareness of Celiac Disease among pediatricians. A lot of
the pediatric groups are becoming attuned to Celiac Disease after
we've diagnosed their patients--we try to keep in contact with the
pediatricians so now they become more aware of the diverse
presentations.
Celiac Disease is a very gratifying disease to diagnose because you
can see a patient who is extraordinarily ill, and two weeks later
theyre healthy. So many other diseases that we see have no quick
cure. Dr. Berezin recently saw an eight-year-old girl who had been
diagnosed with Celiac Disease when she was about two. We hadnt seen
her in several years, and she was in just for a check-up. This kid is
amazing...shes a great athlete...a gymnast, a swimmer, and she has
straight A's. I asked her, "How is it dealing with this diet?" and
she said, "It's really not a problem." It was a pleasure to see
someone who is so well adjusted and is doing so spectacularly.
The Pediatric Gastroenterology group practice at Westchester County
Medical Center [in New York] includes Leonard J. Newman, M.D.;
Michael Halata, M.D.; Howard E. Bostwick, M.D.; Christian Rosioru,
M.D.; and Stuart H. Berezin, M.D.
Return to the Table of Contents
Relatively Speaking...[7]
------------5------------
by Ann Whelan
editor/publisher of _Gluten-Free Living_
Family members who would rather wrestle alligators than take a puff
from a cigarette are often the same members who are not receptive to
being tested for gluten intolerance. In my experience and that of
many of the celiacs with whom I'm in contact, the vast majority of
celiac relatives are steadfast in their desire not to be tested for
Celiac Disease (CD), or even to know much more about it than they
already do.
Granted, they may love us and not really want to dwell on our illness.
Granted, not everyone is able to deal reasonably well with illness of
any kind. Granted, our diet can be a pain in the collective family
neck, especially since most family encounters occur around a meal
where we might need a little extra attention--a family burden if I
ever heard of one, especially in competitive families!
And yes, granted, far too many relatives disbelieve the extent of our
involvement with the disease, our protestations of the span of
involvement of the disease itself, or perhaps even that we actually
have it.
Which means I'll bet you have a relative who has said: "You think
everyone has Celiac Disease."..."I don't want to follow your
diet!"..."I'm not sick. In fact, I'm healthy as a horse."..."Even if
I have it, I don't want to know."..."Give up beer when I'm not even
sick? Forget it."..."I've had it. I don't want to hear another word
about gluten." No one in the world can cut you off faster than a
near-and-dear relative.
You may even have a niece or nephew whose CD symptoms are practically
written on his or her forehead? An aunt or uncle whose
gastrointestinal upsets are part of family lore? A grandparent who
died of gastrointestinal or other cancer?
And practically no one, at least no one interested in preventive
health, smokes any more, although those same non-smoking CD relatives
might well down pizza and beer with a Twinkie chaser, right in front
of your gluten-free eyes.
The reports from Drs. Ciclitira and Marsh [described elsewhere in
this newsletter] should make all our preventive-health-conscious-non-
smoking relatives sit up and pay attention, however reluctantly, to
the potential effects of gluten on their bodies. It has long been
known that from 10 to 15 percent of first-degree relatives of gluten
intolerant individuals are gluten intolerant themselves.
Dr. Marsh enhances this figure in astonishing fashion: Fully 50
percent of these 10 to 15 percent do not have symptoms of gluten
intolerance but do have a flat mucosa, the gold standard for
identifying Celiac Disease! As we celiacs know, gluten neurotic
though we may be, a flat intestinal mucosa may do you as much good as
nicotine- and tar-blackened lungs. With renowned British
understatement, Dr. Marsh has said, "There is a great predisposition
to malignancy in untreated gluten sensitivity." He also says,
"There's no doubt that an adult, particularly with latent CD, may be
very predisposed to bone disease."
Far be it from me to get involved in any family dramas. Trust me,
I've got plenty of my own--and yes, some of them involve suspected
gluten intolerance. But I do have the additional information your
health-conscious relatives will need when they eventually decide to
find out whether or not they, too, are gluten sensitive.
The labs that do the serologic testing that helps identify gluten
sensitive individuals are: IMMCO Diagnostics Inc. (800/537-TEST),
Immunopathology Lab, University of Iowa Hospitals (319/356-2688),
Pediatric Gastroenterology and Nutrition Lab at the University of
Maryland (410/706-1997) and Specialty Laboratories (800/421-7110). If
you'd like a copy of the brief article on serologic testing that
appeared on page 11 of the [May/June 1996] issue of _Gluten-Free
Living_, send a stamped, self-addressed envelope to the address below.
Finally, I give blanket permission to reprint the "Report from
Digestive Disease Week, 1996" [which follows this article] as well
as this editorial to help educate relatives, physicians and others
about the dangers of gluten sensitivity.
Good luck in the family alligator pit. Let me know how you do. The
address is: Gluten-Free Living, P.O. Box 105, Hastings-on-Hudson, NY
10706.
Return to the Table of Contents
Report from Digestive Disease Week, 1996[8]
---------------------6---------------------
by Ann Whelan
editor/publisher of Gluten-Free Living
Digestive Disease Week (DDW) is the world's largest assembly of
gastroenterologists and related specialists. [In 1996] DDW was held
in May in San Francisco. Over 12,000 physicians and researchers from
all over the globe gathered to learn more about their specialty,
network with colleagues, and review the very latest equipment and
products. The annual event is sponsored by the American
Gastroenterological Association, The American Society for
Gastrointestinal Endoscopy, The American Association for the Study of
Liver Diseases, and the Society for Surgery of the Alimentary Tract.
In the main exhibit hall, company representatives explained what their
latest equipment, medications, and ancillary products do and the ways
in which they might improve clinical practice and research. The
exhibits ranged in size from huge displays of high-tech equipment to
much smaller specialized food displays like those of our very own
Dietary Specialties and EnerG Food.
One section of the exhibit hall was devoted to nonprofit organizations
and included groups such as the Crohn's & Colitis Foundation of
America and the American Digestive Health Foundation. The Celiac
Disease Foundation (CDF) and the Gluten Intolerance Group of North
America (GIG) represented Celiac Disease (CD), as they have for
several years. I had been invited by Elaine Monarch, founder and
Executive Director of CDF, to join her in speaking to physicians.
Questions are answered
----------------------
Elaine Monarch, CDF board member Elizabeth Purko, and I answered
questions, provided literature, and talked nonstop. We offered to
send more information. We repeated the same things we people with CD
always do: Look for us. We're out there and we need you. These are
our symptoms. These are our problems. Ever politely and tenaciously,
we did what we could to put CD on their personal gastrointestinal map.
We encouraged them to attend the clinical symposium on Celiac Disease
that was included in the week's curriculum. Initially conceived by
Elaine Monarch, coordinated by CDF Medical Advisor Martin Kagnoff,
M.D., and sponsored by the American Gastroenterological Association,
the afternoon symposium featured three celiac experts: Dr. Kagnoff,
Paul Ciclitira, M.D., and Michael Marsh, D.Sc., M.D.
In the past years at DDW, Monarch said, the physicians had not been as
receptive to information about Celiac Disease as she would have liked.
Most involved in planning this year's symposium were extremely pleased
by the response. The posted sign said the room held 340 people. All
seats were filled and listeners lined the aisles and crowded into the
back.
Dr. Kagnoff, a prominent researcher who is Professor of Medicine at
the University of California, San Diego, served as moderator and set
the stage by detailing what is known and not known about the process
that activates CD in susceptible individuals. He was followed by Dr.
Paul Ciclitira.
Dr. Ciclitira is a London gastroenterologist. Early in his talk he
noted how the incidence of CD keeps changing because of accurate
serological screening tests. "I've been advised that in this country
it's recently been revised from 1 in 6,000 to 1 in 3,000," he said.
"Therefore you're talking about 150,000 people with CD. And it's my
opinion that there are an awful lot of patients out there who are not
diagnosed. In Europe, the figures again keep changing, but in general
they're in the order of 1 in 1,000."
More striking still, Dr. Ciclitira added: "It's known in Galway and
in some areas of Ireland that it's 1 in 300 of the population, and in
fact it's the most common reason for admission to a medical bed in
Galway Hospital."
Testing family members
----------------------
Dr. Ciclitira said that more and more commonly he sees patients
presenting in the later age groups. Like Dr. Marsh, who followed, he
was adamant not only about the necessity for physicians to be aware of
the possibility of CD with certain presentations, but also about the
necessity for testing and treating the family members of celiac
patients.
"In my experience, first-degree relatives of patients with Celiac
Disease have approximately a 15 percent chance of having the same
condition," Dr. Ciclitira said. "If the members of a family with CD
have unexplained symptoms that have gone on for many years, and they
can be either psychiatric or gastrointestinal, that figure in my
experience rises to 50 percent. Therefore it becomes even mandatory
to actually consider the diagnosis if you've got a family history with
CD, and often these people present with mild psychiatric
abnormalities."
Dr. Ciclitira also noted other diseases in which Celiac Disease can
be a simultaneous problem:
* Insulin Dependent Diabetes Mellitus: "The papers here show eight
percent have concurrent CD and in my opinion, it warrants
serological screening."
* Thyroid Disease: "Six to eight percent of patients with Graves
Disease have CD."
* Down Syndrome: "The latest publication is that between 20 and 30
percent of children with Down Syndrome have gluten sensitive
enteropathy."
And, of course, he warned the doctors present of the danger of
lymphoma from untreated Celiac Disease: "In my experience, in
untreated CD, approximately 10 to 20 percent of patients potentially
go on to a T-cell lymphoma. This is important because these patients
often present to your surgical colleagues at four in the morning with
an unexplained perforation of the small intestine."
CD treatment is discussed
-------------------------
Dr. Michael Marsh, author of _Coeliac Disease_ (Blackwell Publishers,
1992), then discussed CD treatment. He divided his talk into four
patient categories: conventional, latent-compensated, slow
responders, and refractory.
First, the British physician encouraged the doctors to be positive
about the diet after they diagnose CD and to "emphasize the things
that can be eaten rather than the things that can't." He said he's
come across patients who are afraid of eating anything or who lose
weight because they don't understand the diet.
Dr. Marsh also recommended making sure nutrients are restored,
particularly iron, folate, calcium, and vitamin D. He underlined the
importance of the latter nutrients by saying, "There's no doubt that
an adult, particularly with latent CD, may be very predisposed to bone
disease."
Moving on to what he called "latent-compensated disease," meaning
those patients "who are gluten sensitized but who may not have
clinical developments (symptoms), depending on the degree of mucosal
injury," Dr. Marsh encouraged the physicians to be aware of the
family incidence of CD and of the fact that some family members may
have significant intestinal damage but be completely asymptomatic.
Astoundingly, he said that the overall prevalence of disease in family
members is about 11 percent but "consistently 50 percent of those
relatives (the 11% who are sensitized to gluten) with a flat mucosa
are asymptomatic. This proves that to have a flat mucosa you don't
need to have symptoms at all and, in fact, if those people had not
been biopsied, they would have considered themselves not to have
gluten sensitivity."
This latent-compensated state is important to recognize because of the
"great predisposition to malignancy in untreated gluten sensitivity."
Dr. Marsh reported an increased incidence of cancer of the esophagus,
brain, and bladder in males and of breast cancer in females. "In many
people who have presented with malignancy," he said, "the proximal
mucosa has been normal so we can't rely on the proximal mucosa. This
is where other factors may be important, such as endomysial screening
and looking elsewhere in the intestine."
Dr. Marsh urged the physicians to "work up" patients presenting with
malignancy for Celiac Disease in order to assemble a body of
epidemiological evidence. "How many people with lymphomas who present
to oncology do in fact have a gluten sensitive form of disease?" he
asked rhetorically. "Here we need a jejunal biopsy and we need to
look for gamma delta cells and endomysial cells and do a gluten
challenge either by jejunal or rectal challenge."
Dr. Marsh called his next patient category, the slow responder, very
important because he believes that most will, in fact, eventually
respond if they are "carefully looked at." He urged the physicians to
check the slow responder's diet, antigliadin antibodies, and nutrient
levels and to look for ancillary disease such as pancreatic problems
or intestinal overgrowth. He also recommended a visit to an
experienced dietitian.
It was with his fourth category where Dr. Marsh's advice was
discouraging. This very small group of refractory patients usually
presents above age 50 with persistent, unremittant diarrhea. "I think
refractory disease is no longer gluten dependent," he said. "It seems
to be a process that is now totally independent of gluten
sensitivity...It's very difficult to know how to treat these kinds of
patients."
Time ran out, so the question-and-answer session following the three
talks was very limited. As celiac patients, we can only take heart
from the interest this gathering seemed to indicate and hope it
continues, especially here in the United States.
[Ann Whelan is the publisher of the bimonthly newsletter _Gluten-Free
Living_. Subscriptions are $29 for one year, $49 for two years.
Outside the USA add $5. Write to Gluten-Free Living, PO Box 105,
Hastings-on-Hudson, NY 10706. I have found this newsletter to be
well-written, informative, and worth the price of the subscription. I
highly recommend it.--editor]
Return to the Table of Contents
Newsletter Roundup
---------6--------
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.
.................................................................
: :
: Excerpts from the San Antonio CS Support Group :
: ---------------------------------------------- :
: newsletter: Mar. 1997 Lynn Rainwater, Secretary/Treasurer :
: 1023 Cloverbrook :
: San Antonio, TX 78245-1604 :
:...............................................................:
Hershey's Miniatures are all run on the same production line, and are
made in the same molds. This includes Krackels, which are not
gluten-free (GF). Although the molds are thoroughly cleaned between
runs, a slight possibility of cross-contamination exists. This was
originally reported in The Nutmeg Celiac and then confirmed via a
phone call to Hersey's. For more information, call (800) 468-1714.
.......................................................
: :
: Excerpts from the Midlands Chapter 13 Support Group :
: --------------------------------------------------- :
: newsletter: April 1997 Sandra K. Allen, editor :
: Route 1 Box 707 :
: Fort Calhoun, NE 68023 :
:.....................................................:
"Living With a Chronic Illness" was the title of a talk by Steven J.
Kingsbury at the 1996 CSA Conference. Dr. Kingsbury is a
psychiatrist/psychologist at the Dallas Veterans Affairs Medical
Center in Texas.
Dr. Kingsbury revealed at the beginning of his talk that he had
Multiple Sclerosis and would give his talk sitting down. He said he
had diagnosed himself but several of his doctor friends did not
believe him. He searched out a specialist in this area and confirmed
his diagnosis. He suggested one should always get more than one
opinion and go to the best doctor available in that field.
Dr. Kingsbury suggested several ways of coping with a chronic illness
that he has learned first hand:
1. People suffer less when they have enjoyable things to do.
2. Never have as a goal anything a dead man can do. [For example,
don't say "I won't eat gluten;" say, "I will eat tasty, gluten-
free food."]
3. Don't focus on what you are missing.
4. It is important to have good support.
5. Have positive goals.
6. Doctors should encourage hope.
7. Lower stress to get better control over your immune system.
Dr. Kingsbury referred to his wife as the "Angel from Hell" and gave
her a great deal of credit in helping him cope with his disease. He
was an inspiration to all of us who had the privilege of hearing him
speak.--Marge Campbell
.............................................................
: :
: Excerpts from the _CSA/GC Newsletter_ :
: ------------------------------------- :
: March 1997 Lois Walter, editor :
: Celiac Sprue Association of Greater Chicago :
: 124 Newton Ave. :
: Glen Ellyn, IL 60137 :
:...........................................................:
Rich Chocolate Ovaltine does not contain gluten, as it does not
contain malt. (The Chocolate Malt flavor does contain gluten.) This
information was verified in a letter from Hummel Nutrition,
distributors of Ovaltine. The letter adds, "...please note that all
production equipment is thoroughly cleaned between production runs of
different flavors..."
La Preferida states in a letter "...we do not have a gluten-free
product list....Both the La Preferida Taco Seasoning Mix and the
distilled vinegar found in several of our products are gluten-free..."
Dietary Specialties is now carrying Bi-Aglut products, including
several pastas, apricot-flavored cookies, chocolate chip cookies, tea
biscuits, and crackerbread. Also, they have GF White Rice and Brown
Rice breads that are pre-sliced and double-wrapped to retain their
fresh taste. Their baker advises these breads are good for sandwiches
and make wonderful toast. Call them at (800) 544-0099 or write to
Dietary Specialties, PO Box 227, Rochester, NY 14601.
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References
----------
[1] _Federal Register_ (4-1-96 Edition), 21CFR Ch.1, Section 184.1277.
[2] _Federal Register_ (4-1-96 Edition), 21CFR Ch.1, Section 184.1444.
[3] "Additives Alert", an information sheet from the Greater
Philadelphia Celiac Support Group, updated early in 1997. This
specific information comes from Nancy Patin Falini, the dietitian
advisor for the group and a speaker at national celiac conferences
in the past few years.
[4] From the CELIAC Listserv archives, on the Internet, Donald D.
Kasarda, posted November 6, 1996.
[5] From NEW-LIST Listserv, on the Internet, weekly digest, special
issue, dated 27 Apr 1997 to 2 May 1997.
[6] Reprinted with permission from the April 1997 newsletter of the
Westchester Celiac Sprue Support Group, pg. 2, editted by Leslie
Elsner and Sue Goldstein.
[7] Reprinted with permission from _Gluten-Free Living_, July-Aug.
1996, beginning on pg. 2. Editted by Ann Whelan. Note that Ann
has given blanket permission for this specific article to be
reprinted by anyone, without having to contact her first. Do not
reprint other articles from _Gluten-Free Living_ without first
getting permission.
[8] Reprinted with permission from _Gluten-Free Living_, July-Aug.
1996, beginning on pg. 1. Editted by Ann Whelan. Note that Ann
has given blanket permission for this specific article to be
reprinted by anyone, without having to contact her first. Do not
reprint other articles from _Gluten-Free Living_ without first
getting permission.
Return to the Table of Contents
Recipe Page
-----8-----
**********************************************************************
Blueberry Buckle
3/4 cup sugar
1/4 cup soft shortening
1 egg
1/2 cup milk
1-1/2 cups rice flour
2 tsp. GF baking powder
1/2 tsp. salt
2 cups blueberries, or 12 oz. frozen (thawed)
1/2 cup sugar
1/3 cup sifted rice flour
1/2 tsp. cinnamon
1/4 cup softened butter or margarine
Mix together 3/4 cup sugar, shortening, and egg. Stir in the milk.
Mix together 1-1/2 cups flour, baking powder and salt. Add to the
sugar mixture. Fold in the blueberries.
Combine the remaining ingredients to form the crumb mixture.
Pour the blueberry mixture into a 9 x 9 inch pan. Spread the crumb
mixture on top of the blueberry mixture. Bake at 375 degrees F for
45-50 minutes.
This recipe comes to us from Judy Phelps.
**********************************************************************
Low Fat Brownies
1/2 cup GF flour mix**
1/2 cup unsweetened cocoa powder
2 egg whites
1 large egg
3/4 cup granulated sugar
6 Tbsp. unsweetened applesauce
2 tsp. canola oil
1 tsp. GF vanilla
chopped nuts (optional)
Spray an 8" pan. In a medium bowl, combine the flour and cocoa. Mix
well.
In a large bowl whisk together egg whites, egg, sugar, applesauce, oil
and vanilla. Stir in the flour mixture until just blended. Do not
overmix. Pour the batter into a pan, add chopped nuts on top. Bake
for 25 minutes at 350 degrees F.
This recipe comes to us from our March meeting.
**********************************************************************
Chop Suey
1/4 cup butter
1-1/2 cups (3/4 lb.) meat (pork, chicken, beef, or turkey)
1 cup finely chopped onions (optional)
1 cup thin-sliced celery
1 4-oz. can mushroom pieces
1 tsp. salt
1/8 tsp. pepper
1 cup hot water
1 can bean sprouts, drained
1/3 cup cold water
2 Tbsp. cornstarch
2 tsp. GF soy (tamari) sauce
1 tsp. sugar
Melt the butter in a hot skillet. Add the meat; stir and sear quickly
without browning. Add onions and fry for 5 minutes. Add the celery,
mushrooms, salt, pepper, and hot water. Cover and cook 5 minutes.
Add the bean sprouts, mix thoroughly, and heat to boiling.
Mix the cold water, cornstarch, soy sauce, and sugar. Add this
mixture to the pan. Stir lightly and cook until the sauce is
thickened, about 5 minutes. Serve over rice.
This recipe comes to us from Vicki Lyles, who got it originally from
Pam Hangen Caddell, her college roommate.
**********************************************************************
Vegetable & Pasta Salad
Pastariso Rice Pasta
1/2 cup cider vinegar
3/4 cup olive oil and corn oil
1/2 tsp. salt
fresh pepper
1/2 tsp. oregano
juice from 1/2 lemon (1-1/2 to 2 Tbsp.)
3 cloves fresh garlic, crushed
vegetables such as tomato, red and green pepper, and broccoli
1 can chick peas
Cook the pasta according to the directions.
Make a marinade by mixing the vinegar, oil, salt, pepper, oregano,
lemon, and garlic together. Add the pasta to the marinade and let it
sit for 2-3 hours.
Remove the pasta from the marinade. Add the vegetables and chick peas
to the pasta.
This recipe comes to us from our March meeting.
**********************************************************************
Shipwreck
3 medium potatoes
1 small onion, chopped
2 cups pinto beans, cooked and drained
1 lb. ground turkey, browned and drained
salt & pepper
1 can GF tomato soup
Slice and layer the raw potatoes into the bottom of a 9 inch pan.
Sprinkle the chopped onion over the potatoes. Add the pinto beans.
Cover with the ground turkey. Season with salt and pepper. Cover the
top with the tomato soup, undiluted. Cover with foil and bake at 400
degrees F for 1-2 hours.
This recipe comes to us from Bruce & Judy Richardson.
**********************************************************************
** 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)
**********************************************************************
Tri-County Celiac Sprue Support Group Officials:
------------------------------------------------
Physician Advisor: Thomas Alexander, M.D.
Dietitian Advisor: Dorothy Vaughan, R.D.
President: Diane Morof
Vice President: Mary Guerriero
Past President: Jim Lyles
Secretary: Denise Parsons
Newsletter Editor: Jim Lyles
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 Jim Lyles.
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