THE SPRUE-NIK PRESS
Published by the Tri-County Celiac Sprue Support Group,
a chapter of CSA/USA, Inc. serving southeastern Michigan
Twenty-Fifth Edition November 1995
**********************************************************************
..................................................
: What's Inside Search For :
: ------------- ---------- :
: Miscellaneous Notes . . . . . . . . . -1- :
: Shopping Guide Corrections . . . . . . -2- :
: Shopping Guide Q&A Highlights . . . . -3- :
: Q&A With Our Advisors . . . . . . . . -4- :
: Newsletter Roundup . . . . . . . . . . -5- :
: Recipes for Family and Friends . . . . -6- :
:................................................:
Disclaimer
Miscellaneous Notes:
---------1----------
Allergy Hot Line: The Food Allergy Network has developed the Food
Allergy Awareness Campaign. Through the support of the National
Restaurant Association, the program teaches restaurant workers to help
patrons avoid problem foods and what to do if reactions occur. The
network publishes a bimonthly newsletter, a cookbook, and guides to
living with food allergies. For more information, call (703) 691-3179
or write to Food Allergy Network, 4744 Holly Ave., Fairfax, VA 22030.
Baking Tip: You can make buttermilk by adding one tablespoon of lemon
juice to one cup of milk and then letting the mixture sit for about
five minutes.(1)
Ready-to-eat GF Vegetarian Indian Meals: The Tamarind Tree makes and
distributes these. The package states the meals are "wheat- and
gluten-free and contain no preservatives, chemicals, sugar, or MSG."
According to Lisa Haynes, they are quite tasty, though somewhat high
in sodium. For more information, write to The Tamarind Tree Ltd., PO
Box 845, Mahwah, NJ 07430.(2)
Coalition Meeting: This newsletter went to press before the national
coalition meeting took place (see _The Sprue-nik Press_, Sept. 1995.
At the November meeting we will be giving a preliminary report on the
outcome from this historic meeting. More than 60 people representing
30 or more groups were registered to attend. This included
representatives from the CSA Executive Board, several CSA chapters,
the GIG of Florida, the Celiac Disease Foundation, the American Celiac
Society, the GIG of North America, and other independent groups. From
our own group, Diane Morof (president), Jim Lyles (newsletter editor),
and Dr. Alexander (physician advisor) were planning to attend.
More details will about this meeting and its outcome will be printed
in future editions of _The Sprue-nik Press_.
1996 CCA Conference: The Canadian Celiac Association is going to hold
their 1996 conference in Montreal on May 31 and June 1-2.
Return to the Table of Contents
Shopping Guide Corrections:
--------------2------------
Please note the following changes to TCCSSG shopping guide:
Pg. 37, under "CONDIMENTS--Barbecue Sauce": Delete K.C. Masterpiece
Pg. 74, under "SOUPS & SAUCES--Canned": Delete Healthy Choice Beef
& Potato
We have a letter from The Clorox Co. dated July 7, 1995 which states
that all of the K.C. Masterpiece barbecue sauces are GF. However,
one of our members sent us the label from a bottle of K.C. Masterpiece
Honey Teriyaki Barbecue and Grilling Sauce, and it states clearly that
one of the ingredients is soy sauce made from wheat and soybeans.
(Thank you to Karen Jo Meyers for pointing this out!)
Similarly, we have a food sensitivities booklet we received from
Hunt-Wesson, Inc. on July 25, 1995 which lists Healthy Choice Beef &
Potato Soup as Gluten-Free. However, one of our members reports that
the label for this soup lists wheat flour as an ingredient. (Thank
you this time to Marcia Campbell.)
Either the manufacturers overlooked these items in compiling their
lists, or the ingredients have recently changed. Please be sure to
strike these items from your list of GF products. These changes show
why it is important to always check the label, regardless of your past
experiences with a product or its appearance in a GF product listing.
Return to the Table of Contents
Shopping Guide Q&A from the October Meeting:
----------------------3---------------------
We distributed the new shopping guide at our last meeting, which led
to a few questions. Some of those questions and the answers provided
by Jim Lyles are listed here:
Q: Why is there no information from Kraft or General Mills?
A: Kraft will not provide a list of GF products in writing. Some
people have had success in calling them regarding the GF status of
a specific product, but that is as far as they will go.
General Mills does not consider any of their products to be GF,
due to cross-contamination problems. They are listed in the first
section (pg. 5) under "Companies with No GF Products".
Q: If a product is in last year's guide, but isn't in this year's,
does that mean we should not use it anymore?
A: Not necessarily. It could be that the manufacturer didn't answer
our letter this year. If the information was more than 18 months
old, we would have discarded it. Or the manufacturer might have
let caution be the better part of valor and decided not to provide
GF information any longer. In that case, you may wish to look at
the ingredients and judge for yourself if the product is safe; or
you may wish to play it safe and avoid the product.
Q: Should we throw last year's guide away?
A: Absolutely. It is old information, and there are products that
have been intentionally removed from this year's guide because
they are no longer GF.
Q: If a product is not in the shopping guide, then does that mean I
shouldn't eat it?
A: No, it means we don't have specific information about it. The
only brands we know you can't eat are those listed in the
"Companies With No GF Products" section on page 5.
Return to the Table of Contents
Q & A with Our Advisors
-----------4-----------
Thomas Alexander, MD
Dorothy Vaughan, RD
summarized by Jim Lyles
At our September meeting, we heard presentations from three of our
members that attended the celiac conference in Baltimore. Summaries
of these talks appeared in a previous issue of _The Sprue-nik Press_.
Afterwards, we had a question and answer session with our two
advisors, Dr. Thomas Alexander and Dorothy Vaughan, RD. We also had
a few questions directed at the three members that made presentations
(Kathy Davis, Mary Guerriero, and Jim Lyles). This article highlights
that question and answer session.
In reading this remember to take it only as general information.
Discuss things with your doctor before taking any action as a result
of this article or anything else you read.
Q: Will in vitro lab testing eventually let us do away with the
gluten challenge?
Dr. Alexander: In vitro means in a bottle or test tube, instead of in
the body. This suggests the possibility of testing the immune
system's response by using a tissue sample, instead of
reintroducing gluten to the diet and testing the body's response.
It is too early to tell yet, as these tests are on the cutting
edge of current research. It will have to be tested in multiple
studies, at different labs, to see if the results are repeatable
and consistent.
Q: How common is celiac disease?
Dr. Alexander: In reviewing the syllabus for the Baltimore
conference, there are some points that I wonder about. The
syllabus suggests the frequency of celiac disease (CD) may be one
in 250 people. Perhaps it is in Ireland and certain other
locations where there is a homogenous population this may be true.
But could it really be one in 250 people in Italy, which is
practically synonymous with pasta? You would expect there to be
an epidemic of complications. Perhaps the definition of CD used
in these studies is less stringent than it is here. If the
studies are based on symptoms or positive blood tests, they could
be including a lot of false positives in their statistics. Or
perhaps the studies are based on relatives of celiacs, in which
case you would pick up a higher percentage of celiacs than you
would from the general population.
Q: How should the celiac blood tests be used in diagnosing and
treating CD?
Dr. Alexander: The way to diagnose CD is not to say, "I have this
patient with diarrhea, and everything's normal with the X-ray.
That suggests CD. Let's put him on the diet and see what
happens." And when the patient gets better you say, "Ah ha,
that's what the patient has." That may not necessarily be the
case. All too often, I've seen a patient diagnosed with CD 20
years earlier because they were put on a GF diet and got better.
It may have been something else entirely with the apparent
improvement from a GF diet being coincidental.
I've had patients that say, "I can't eat wheat, corn, or rice;
they give me diarrhea. So I must have CD." As you know, these
are not all gluten-containing grains. In these cases it is quite
possible that CD is not the correct diagnosis.
CD is usually diagnosed as follows: First, the patient undergoes
the celiac antibody blood tests. Different studies have suggested
one or the other of the blood tests is best. I use all three of
them: antigliadin, antiendomysial, and antireticulin. You might
have only one or two positive, or all three. Next, you have a
small intestine biopsy done. This should be done before you start
a GF diet. If the biopsy results are consistent with CD, then you
probably have your diagnosis. At this point you start the GF
diet. Six months or (preferably) a year later you repeat the
biopsy. If the biopsy results are substantially better, that
completes, or at least strengthens the diagnosis. If you want to
put the icing on the cake, you can repeat the blood tests too and
see if they are now negative.
Some doctors suggest using the blood test to see if the patient is
complying with the GF diet. I don't think you need to routinely
do the blood tests with all patients. I think that most patients,
if you are honest with them, will be honest with you about whether
or not they are complying with the diet. It would be like testing
the blood alcohol level of a recovering alcoholic.
You can use the blood tests with patients when they are not sure
how well they are complying. But some of these antibody levels
may stay elevated for years or may never normalize, although for
many patients they eventually do normalize.
IgA antibodies for each of the tests (antigliadin, antiendomysial,
and antireticulin) quickly become elevated in a non-complying
celiac; the IgG antibodies become elevated later on. When you
start the GF diet, the IgA levels come back down the quickest,
while the IgG remains elevated for a much longer time.
Some celiacs can be IgA deficient. An elevated IgG and normal IgA
is possible for these celiacs, if they have not been on the diet.
Q: Is the follow-up biopsy really necessary after being on the diet
for six months to a year?
Dr. Alexander: Yes, as was discussed above. Repeat biopsies
thereafter are generally not necessary as long as the patients are
feeling well, and biochemically they are looking good on paper.
What we recommend is about once a year get the routine blood count
and biochemical panel. It is also a good idea to check iron
levels, vitamin B-12, and folic acid. With women I'm starting to
get vitamin D levels also, because you can get accelerated
osteoporosis with them.
Q: If you do the repeat biopsy, and it comes up negative, what should
you do next?
Dr. Alexander: First of all, you should accept the diagnosis. If you
are feeling better and doing well, then it is just a matter of
maintaining your newfound good health with a GF diet.
If you are not doing well and your biopsies are not improved, then
you should recheck your diet and make sure it is as GF as you can
make it. If the diet is truly GF, then you may be going into the
dangerous but uncommon condition known as refractory CD (also
called refractory sprue).
Q: What is the problem with annatto color?
Dorothy Vaughan: I called the FDA in Washington about annatto color,
and I am waiting for some printed information. When I get the
information it will be published in a future newsletter. I
haven't been concerned with this in the past; this is somewhat of
a new issue. This issue really applies to all natural colorings
and flavorings.
The concern would be: Is that coloring or flavoring extracted
with alcohol? If so, then the next question is: Is it a
distilled alcohol? Finally, if a distilled alcohol is used, then
we must ask: Is it distilled from a gluten-containing grain such
as wheat? If the answer to all three of these questions is "yes",
then the flavoring/coloring may contain some gluten.
This becomes very complex. I would not state in absolute terms
that everything with annatto coloring or natural flavorings and
colorings should be ruled out. I've checked with the local FDA
office and the FDA office in Washington, and I am waiting for
information from them. In the meantime, I am not going eliminate
everything with annatto in it, because I don't have the evidence
that says I must. It is so pervasive, and I have no evidence of
people having a problem with it. That is a personal decision I am
making; if you feel you should eliminate annatto coloring you may
of course do so.
Q: Is there a problem with mono- and di-glycerides?
Dorothy Vaughan: Mono- and di-glycerides are a fat derivative.
Dr. Alexander: There was a lot written in the earlier sprue
literature about mono- and di-glycerides, and it has really
confused a lot of people. There really is no relationship between
glycerides and CD. Another misconception applies to glutamate;
this has nothing to do with CD either. I went back to 1966 in the
computer database, which covers about 3500 medical journals, and I
could not find a single article to support any claim of a
connection between glutamate and CD.
Jim Lyles: In the talk in Baltimore which mentioned glycerides, there
was talk of a wheat carrier being added in and then later
extracted during the processing of mono- and di-glycerides. The
concern is that the extraction of the wheat carrier might be less
than 100%.
Q: What is the treatment for a celiac with osteoporosis?
Dr. Alexander: It is the same as for anyone else, as long as your CD
is under control. This is another benefit of a follow-up biopsy;
it confirms that things have returned to normal, or are at least
close to normal.
Once you've gotten CD under control, then you should follow
whatever the current treatment is for osteoporosis. This is
particularly important for post-menopausal celiac women, as their
absorption of calcium might be somewhat less than the average
women. It may not be enough to show up on a blood test, but still
be enough to leach calcium out of the bones.
Q: I am getting allergy injections. Is there anything I need to be
concerned about regarding the extracts used in the injections?
Should I tell my doctor that I can't have any gluten in my
extracts?
Dr. Alexander: The allergens they are injecting shouldn't contain any
gluten or affect your CD. You can let your allergist know about
your CD, but I don't think you have much to be concerned about.
The allergens they used are very purified and unlikely to contain
gluten.
Q: I've suddenly started losing my hair about three weeks ago. I
started the GF diet about two months ago, and I am feeling better.
Is the hair loss related to CD?
Dr. Alexander: Severe nutritional deficiency can cause hair loss,
skin problems, stomatitis, etc. However, I wouldn't expect the
hair loss to begin months after a GF diet is started since by that
time nutrition should be improving..
Q: In a previous issue of _The Sprue-nik Press_, you listed someone we
could call for pharmaceutical ingredient information. I've used
this number and found the man to be most helpful. Should I
continue using this or use the pharmaceutical list that this group
has provided to contact the individual pharmaceutical company?
[Editor's note: This refers to John Tilelli, a pharmacist at
Hudson Bay Point Hospital in Florida. Call 7:30-4 EST, weekdays,
at (813) 869-5400, ext. 2615. This information originally came
from _The Celiac ActionLine_, and was reprinted in _The Sprue-nik
Press_, April 1995]
Mary Guerriero: I recommend calling the pharmaceutical company
directly, if you can. When you call, don't ask if the medication
is gluten-free as answering yes opens them to liability. Instead,
ask them for the source of suspect ingredients such as starch in
the medication; in other word find out which grain the suspect
ingredients were derived from. For extracts, flavorings, etc.,
find out if a grain alcohol was used to extract the ingredients,
and if so, which grain the alcohol came from. I have gotten
absolutely wonderful responses from the companies with this
approach.
The only problem with the source in Florida is you have to find
out how up-to-date the information is. How often is it updated?
[Editor's note: According to _The Celiac ActionLine_, it is updated
monthly.]
Jim Lyles: If you want to be on the safe side, you could call the
pharmaceutical company and if you don't think you got a good
answer you could also call the source in Florida. If either one
says the medication is not GF, then you could avoid it.
Dr. Alexander: Anne Laginess, a pharmacist at Henry Ford Hospital,
spoke to our group in 1994. She reviewed a number of medications
and checked with pharmaceutical manufacturers to see if there is
any gluten in these products. She found that most medications are
GF. Later, an article in one of the major medical journals
reported on a study in which a number of medications where
subjected to a gluten-detection test. According to this test,
most of the medications did contain gluten. Did gluten get into
these products somehow, or were the tests not valid? I suspect
the latter.
If you are on a medication that you need to take continually, such
as for high blood pressure or a heart condition, it is a good idea
to double-check with the manufacturer. If you are on an
antibiotic (for example) for a couple of weeks, it probably won't
make that much difference for you.
Dorothy Vaughan: It is probably a good idea to contact the
manufacturer to make them aware of the concerns we have as
celiacs. That way they'll hear from a number of us, instead of
just a few.
Q: My gastroenterologist has never done any repeat blood work or a
follow-up biopsy since the original diagnosis. In fact, I've
never had the antibody blood work at all. He says since I feel
good, it isn't necessary. What can I do to persuade him to do
some follow-up testing?
Dr. Alexander: It is generally accepted as standard procedure to do
a follow-up biopsy. To convince your doctor that he is not
following standard procedure, you need to get a review article
from a major journal, written by someone with national
recognition, and give it to him to back up what you are saying.
If this offends your doctor, well, that's his problem.
Q: In Canada, vinegar distilled from gluten grains is considered GF,
because gluten doesn't get transferred through the distillation
process. In the USA, grain vinegar is generally not considered
GF. Is there any research going on to establish this one way or
the other?
Dorothy Vaughan: Most of the current literature advises celiacs to
avoid grain-distilled vinegar, and we do have other choices. I
don't know of anyone currently researching this question.
Keep in mind there is a difference between a laboratory
distillation and the food processing of a manufacturer. There
could be contamination from flour dust in the air, etc.
Q: Is there a genetic factor associated with CD?
Dr. Alexander: Yes, there is. Among first degree relatives of a
celiac (siblings, parents, and children) there is a 2-5% incidence
of CD. In studies where you see a 10-20% incidence there is
usually an inherent bias in the study (not intentional). For
example, in one study they looked at all the first-degree
relatives of celiac patients that were willing to participate.
Now if you are feeling fine, do you really want to go in for some
blood test that might prove you have some weird disease that means
you can't eat bread and pasta? So this study probably got mostly
the relatives that weren't feeling good, and amongst them they
found that 10% had CD (surprise, surprise).
In identical twins, reared together, in only about 70% of the
cases do both twins have CD. In the other 30%, one twin has CD
and one does not. How can we explain this? Even in identical
twins there can be some crossover in the chromosomes which makes
them not identical genetically.
Q: Is there a relationship between stress, Irritable Bowel Syndrome,
and CD?
Dr. Alexander: Irritable Bowel Syndrome (IBS) is a disease which
mimics CD in many ways. There are some doctors that believe IBS
is a bunch of baloney, but it truly is not. There are a lot of
pathophysiological changes that occur in the gut during IBS. One
of the most predominant triggering factors for IBS is stress. Now
let's suppose you have CD. You are carefully following the GF
diet and feeling great, but you still have these bouts of
diarrhea. So you wonder if somehow you are still getting gluten.
Well, it is probably IBS. IBS is the number one cause of diarrhea
that gastroenterologists see. It is possible to have both CD and
IBS.
A number of celiacs are initially misdiagnosed with IBS. I think
a physician has to be careful to take into consideration a number
of possible diseases, and not just the obvious one.
Return to the Table of Contents
Newsletter Roundup
---------5--------
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 _KC CS Update_ :
: ---------------------------- :
: Apr. 1995 Helen Richards, editor :
: Aug. 1995 6317 Goodman Dr. :
: Oct. 1995 Merriam, KS 66202 :
:......................................:
Goodie's specializes in GF cookies, but also has coffee cakes,
muffins, bread, and birthday cakes made to order. Many of their
products can be ordered without lactose, sugar, and/or yeast. Their
orders are shipped Federal Express for freshness. Call (213) 934-3001
or write to Goodie's, 7217 Melrose Ave., Los Angeles, CA 90046.
_Digestive Disease Update_ is a quarterly publication from St. Luke's
Hospital in Kansas City, Missouri. You can get on their mailing list
by phoning (816) 932-6200.
_Good Food, Gluten-Free_ is a cookbook written by Hilda Cherry Hills.
This verbose lady hails from Essex, England and has a husband who is a
celiac. The book begins with a short history of CD and its treatment.
Subsequent chapters touch on other diseases linked with CD, feeding
celiac infants and young children, kitchen hints, picnics, dining out,
and 100 pages of recipes. It also contains a list of menu terminology
and definitions of gluten-containing and GF items. Vegetarians will
appreciate the vegetarian section. Though authored by an
Englishwoman, the recipes use ingredients available in the USA. It
sells for $9.95.
Polenta (poh-LEHN-tah) is a GF mush made from cornmeal. It can be
eaten hot with butter or cooled, cut into squares, and fried.
Parmesan cheese can be mixed with it for added flavor. It can be
served as a first course, side dish, or for breakfast.
Gillian's French Rolls produces rolls and many other GF products as
well. The owner, Bob Otolo is a chef and a member of the Celiac
Support Group at Children's Hospital in Boston. Their members declare
the rolls to be "...the best GF bread products we have ever tasted."
Call (617) 286-4095 or write to Gillian's French Rolls, 145 Proctor
Ave., Revere, MA 02151.
Why Treat CD? The following answer to this question comes from
"Celiac Disease and Gluten Sensitivity", by Carol E. Semrad, MD, from
the Columbia University Gastroenterology Web: "In symptomatic
patients the obvious answer is to relieve debilitating symptoms. What
about individuals who have minimal symptoms or who are asymptomatic
[no symptoms]? There are two reasons to treat such individuals with a
GF diet: 1) a subgroup of these patients will progress to more severe
disease and hence develop symptoms, and 2) there is an increased
incidence of small intestinal lymphomas and adenocarcinomas in
individuals with CD. The increased incidence of cancer seems to
correlate with the degree of intestinal inflammation (activity)
present, as individuals whose disease responded to a GF diet and who
remained compliant with the diet had a lower incidence of such
cancers."
......................................
: :
: Excerpts from _CSGC News_ :
: ------------------------- :
: May 1995 Tanis Collard, editor :
: 11 Level Acres Rd. :
: Attleboro, MA 02703 :
:....................................:
Tanis Collard, editor of CSGC News, writes: "Don't forget, unlike
some of the diseases so prevalent in today's society, CD is only a
diet... no medications, no chemotherapy, no transfusions... just a
restrictive diet to enhance the quality of your lives."
............................................................
: :
: Excerpts from the Gluten Free Gang Support Group :
: ------------------------------------------------ :
: newsletter: Summer 1995 Mary Kay Sharrett, co-editor :
: Children's Hospital :
: 700 Children's Drive :
: Columbus, OH 43205 :
:..........................................................:
Calcium Loss and Coffee: Calcium loss is often a problem for celiacs.
It was believed that coffee contributes to bone loss. A recent study
by Tufts University indicates that high intakes of calcium can help
prevent bone-loss for coffee drinkers. This study (done on
non-celiacs) reports that women who consumed an average of 800 mg. of
calcium per day did not lose bone mass no matter how much coffee they
drank.
...........................................................
: :
: Excerpts from the Houston Celiac-Sprue Support Group :
: ---------------------------------------------------- :
: newsletter: Sept. 1995 Janet Y. Rinehart, President :
: 11011 Chevy Chase :
: Houston, TX 77042-2606 :
:.........................................................:
_Elles' Gluten Free Cookbook_ is new and available from Sterk's
Bakery. Sterk's specializes in gluten-free (GF) products with
packaged bakery goods and also mixes. The cookbook is $9 including
shipping. Make checks payable to Elles Sterk. To order, write to
Sterk's Bakery, 1402 Pine Ave., Suite 543, Niagara Falls, NY 14301.
.....................................................
: :
: Excerpts from the Westchester CS Support Group :
: ---------------------------------------------- :
: newsletter: Oct. 1995 Sue Goldstein :
: 9 Salem Place :
: White Plains, NY 10605 :
:...................................................:
Celia Cooks, Inc. is back in business! They offer gourmet and
specialty GF foods, such as smoked salmon, vegetables in cream sauce,
soups, pastas, and sauces. They are offering a 10% discount until
Nov. 30th. Call (800) 717-0005 or write to Celia Cooks, PO Box 2698,
Darien, CT 06820.
CEL-KIDS is a brand new Internet discussion group for celiac children
and their parents. This group addresses issues unique to celiac
children and their friends and families. It allows the kids to become
e-mail "pen-pals" with each other, and their parents to discuss issues
unique to raising celiac children. To subscribe to CEL-KIDS, send an
e-mail message to LISTSERV@MAELSTROM.STJOHNS.EDU containing "SUB CEL-KIDS
firstname lastname". (Don't include the quotes.) Thank you to Mike
Jones (e-mail: mjones@digital.net) for starting this discussion
group!
.............................................
: :
: Excerpts from _CDF Newsletter_ :
: ------------------------------ :
: Summer 1995 Elaine Monarch, publisher :
: 13251 Ventura Blvd., Suite 3 :
: Studio City, CA 91604-1838 :
:...........................................:
Intestinal Lymphoma: An increased risk of intestinal lymphoma is one
of the complications of untreated CD. A GF diet gradually reduces
that risk until, after five years on a GF diet, celiacs have the same
risk for intestinal lymphoma as the general population.(3)
CD Symposium Video: This 2-hour video contains the following topics,
as presented at the 1994 World Congresses of Gastroenterology:
Introduction and CD pathogenesis, Martin Kagnoff, MD
Approaches to management of adolescents and teenagers with CD,
Marvin Ament, MD
How to find a celiac: new approaches for diagnosis, Chris Mulder,
MD
Latent CD, treating unresponsiveness and malignant complications,
Michael Marsh, MD
The GF diet: facts, fantasy, and practical approaches, Elaine
Hartsook, PhD
The video is available for $15, including postage. Write to CDF,
13251 Ventura Blvd., Suite 3, Studio City, CA 91604-1838.
........................................................
: :
: Excerpts from _Celiac SprueNews_ :
: -------------------------------- :
: Feb./Mar. 1995 Judee DeJaco, chapter chairperson :
: June/July 1995 10424 Flanders Cove :
: Aug./Sept. 1995 San Diego, CA 92126 :
:......................................................:
Not Always Short: The tallest diagnosed celiacs are a 6'8" man and a
6'3" woman.
Celiac-Diabetes Screening: It is thought that celiacs have a greater
chance of developing Type I (juvenile) diabetes than non-celiacs.
There is a free NIH-sponsored diabetes screening test going on. If
you live in the USA and have a first or second degree relative with
Type I diabetes, you can be tested for free by calling (800) 425-8361.
The purpose of the test is to determine if those without diabetes (but
with certain antibodies indicating diabetes is likely to develop) can
delay or avoid diabetes through very small doses of insulin.(4)
Free Lactose Information: A free information packet on lactose is
available from the National Digestive Disease Information
Clearinghouse, part of the NIH. It includes a fact sheet on lactose
intolerance, a list of manufacturers that produce products for the
lactose intolerant, and a list of additional sources of information
about lactose intolerance. Write to Lactose Intolerance/HL, National
Institute of Health, Bldg. 31, Room 2B23, Bethesda, MD 20892.
...........................................................
: :
: Excerpts from the Greater Philadelphia CS Support Group :
: ------------------------------------------------------- :
: newsletter: Aug. 1994 Phyllis J. Brogden :
: newsletter: Mar. 1995 6318 Farmar Lane :
: newsletter: Sept. 1995 Flourtown, PA 19031 :
:.........................................................:
CD Research: As of August, 1994, the National Institute of Health
(NIH) has given out the following grants for CD-related research:
* Martin Kagnoff, University of California, $93,100: "Intestinal
Immune System in Host-Environment Interaction"
* Martin Kagnoff, University of California, $153,748: "Activation
of Celiac Disease by Gliadin Peptides"
* Joseph Michalski, University of S. Alabama, $161,472: "Genomic
Screen for NonHLA-Linked Genes in CD"
* Sandra Rosen-Bronson, Georgetown University, $170,967:
"Molecular Analysis of the Pathogenesis of CD"
This started in 1990 at a conference sponsored by the American Celiac
Society and NIH, followed by lobbying to congress, letters from
celiacs across the country to congress, meeting with congress to get
funding approval for the NIH, followed by more lobbying, and finally
culminating in the grants listed above. US Representatives Peter
Kostmayer and Ralph Regula, Sonya Sharp Hartzell, Marie George and her
daughter Paula, Dr. Frank A. Hamilton, Phyllis Brogden, Elaine
Monarch, Mary Alice Warren, Rosalie Jalbert, Virginia Santucci,
Annette Bentley and many others played a part in making this happen.
A Big Thank You to Don Kasarda [a grain specialist with the United
States Department of Agriculture--ed.] for all the personal help he
has given to celiacs over the years. He has patiently dealt with an
avalanche of questions and requests from chairmen and celiacs alike.
He played a key role in the development of the Elisa Test for
antigliadin antibodies.
Mr. Spice Sauces are totally GF, as well as fat free, salt free,
sugar free, and dairy free. They are also diabetic approved and
contain kosher ingredients. They offer nine different sauces. Three
of these were entered in the American Royal International Sauce
Contest and all three won awards: Tai Peanut Sauce (2nd place),
Garlic Steak Sauce (top ten), and Honey BBQ (top ten). Call (800)
728-2348 or write to Lang Naturals, 741 Namquid Drive, Warwick, RI
02888.
Boston Market Alert: For those of you traveling, be forewarned that
the Philadelphia and Denver area Boston Market (formerly Boston
Chicken) stores are testings a new marinade for their chicken, which
currently uses a soy sauce made from wheat. The good news is that
they are trying to find a GF soy sauce to use so that their chicken
would remain GF. In the meantime, though, be wary of their chicken in
the two cities mentioned. Elsewhere in the USA (including Michigan)
their chicken is still GF.
Note that the Philadelphia group found Boston Market to be a pleasure
to deal with. They are knowledgeable about our diet concerns, and can
point out the specific ingredient(s) that is a problem in each food
they serve. They went out of their way to get information for the
Philadelphia group. While you may find problems at some of the
individual stores (mixed serving spoons, careless employees, etc.)
the company as a whole is making a real effort to provide celiacs with
good information.
.....................................................
: :
: Excerpts from the CSA of Greater Chicago :
: ---------------------------------------- :
: newsletter: Sept. 1995 Gladys Johnson, Editor :
: 943 Fern Ave. :
: Elmhurst, IL 60126 :
:...................................................:
Red Star Yeast has introduced a new bread machine with features such
as rapid baking (two hours) and a bake-only cycle. It makes a 1.5 lb.
loaf. To order, send a check for $149 to E-Rock Int'l, 1001 Yomato
Rd., Suite 308, Boca Raton, FL 33487; or call (800) DOUGH-UF.
Avoid Caramel Color in Quaker Rice Cakes. In Quaker rice cakes, the
caramel color is a barley extract and therefore not safe for celiacs.
Jello Instant Pudding is Not GF; it now contains wheat starch.
References
----------
(1) The Sprue-nik Press, Nov. 1992
(2) From the CELIAC Listserv archives, on the Internet, Lisa J.
Haynes, discussion of October 12, 1995
(3) Alessio Fasano, MD, during a presentation at the Celiac Disease
Foundation group meeting in May, 1995.
(4) From the CELIAC Listserv archives, on the Internet, William Elkus,
discussion of June 12, 1995.
Return to the Table of Contents
Recipes for Family and Friends
---------------6--------------
With the holidays coming up, we are once again listing recipes that
non-celiac families can make. These recipes were specifically
selected for you to pass on to relatives and friends, as they don't
use any of those "weird" celiac ingredients such as xanthan gum or
tapioca starch. You may need to look up some of the ingredients in
your shopping guide, so you can tell them which brands are GF. Also
remind them to make sure ingredients such as peanut butter have not
been contaminated by bread crumbs--it's best to start with an unopened
jar.
**********************************************************************
Nut Bars
1 egg 1 cup chunky peanut butter
1/2 cup sugar 1 tsp. vanilla
Beat egg and sugar until light and fluffy. Add peanut butter and
vanilla, and mix well. Put the mixture in an 8" x 8" x 2" pan sprayed
with non-stick cooking spray.
Bake 25-30 minutes at 350 degrees F. Cool and cut into squares.
This recipe came from our June '95 picnic.
**********************************************************************
Pumpkin Custard
1/2 tsp. butter (for custard cups) 2 Tbsp. honey
1/2 cup heavy cream 1 Tbsp. sugar
1/2 cup half & half 1/2 tsp. cinnamon
2 eggs, lightly beaten 1/4 tsp. nutmeg
1 egg white, lightly beaten 1/4 tsp. allspice
1/2 cup pumpkin puree, canned or fresh
Preheat the oven to 325 degrees F and butter four custard cups.
Heat heavy cream with half & half in a small heavy saucepan over
medium heat until very hot but not boiling. Remove from heat and
gradually whisk the cream mixture into the beaten eggs and egg white
in a medium bowl. Whisk in the pumpkin puree, honey, sugar, and
spices. Strain if necessary, and divide evenly among the custard
cups.
Put the custard cups into a large cake or roasting pan. Fill the pan
with enough boiling water to reach halfway up the sides of the custard
cups. Bake until the custard sets, about 45 minutes.
This recipe came from Judy Hafner.
**********************************************************************
Holiday Pie
1 8-ounce package of cream cheese 2 Tbsp. green pepper, chopped
2 Tbsp. milk 1/8 tsp. pepper
1 jar or package of dried beef, 1/2 cup sour cream
chopped 1/4 cup chopped walnuts
2 Tbsp. instant onion
Blend the cheese and milk. Stir in the beef, onion, green pepper, and
pepper. Mix well. Stir in the sour cream. Spoon the mixture into an
8" pie plate. Sprinkle with walnuts. Bake at 350 degrees F for 15
minutes.
This recipe came from one of our recent potluck gatherings (I'm not
sure which).
**********************************************************************
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: Kathy Davis
Secretary: Denise Parsons
Newsletter Editor: Jim Lyles (200-2214@mcimail.com)
Contributing Editor: Judy Hafner (gpyp07a@prodigy.com)
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 not been submitted for approval
to the CSA/USA medical board; however it 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, at (200-2214@mcimail.com).