THE SPRUE-NIK PRESS
Published by the Tri-County Celiac Sprue Support Group,
a chapter of CSA/USA, Inc. serving southeastern Michigan
Twenty-Sixth Edition December 1995
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: What's Inside Search For :
: ------------- ---------- :
: Coalition Meeting . . . . . . . . . . -1- :
: Miscellaneous Notes . . . . . . . . . -2- :
: Genetics & What's New in Research . . -3- :
: Newsletter Roundup . . . . . . . . . . -4- :
: The Vegetable Vault: Sweet Potatoes . -5- :
: Musings From a Longtime Member . . . . -6- :
: Recipe Page . . . . . . . . . . . . . -7- :
:................................................:
Disclaimer
Coalition Meeting
--------1--------
by Diane Morof
On November 4th and 5th I attended the first United States Celiac
Coalition (USCC) meeting with Jim Lyles and Dr. Alexander in Chicago.
The group included over 60 representatives from various celiac support
groups nationwide. Drs. Joseph Murray and Alessio Fasano served as
facilitators at the meeting. The meeting went extremely well and I
feel that in the future the USCC will be a driving force to help
educate the country on the diagnosis, treatment, and support of
persons with celiac disease (CD).
Dr. Fasano, from the University of Maryland School of Medicine, began
the meeting with some interesting data on celiac research: Over the
past 30 years there have been 6,276 papers published on CD and only 10
of these were from the USA. In an effort to quantify the number of
celiacs in the USA Dr. Fasano took his own money and purchased 2000
blood samples from the Red Cross. He screened each of the blood
samples for CD using the endomysial antibody test. Eight of these
samples tested positive. This indicates a potential ratio of 1/250
people in the USA with CD or with the genetic potential to develop CD.
If this ratio were to hold true for the entire USA population, it
would mean there are over one million celiacs in this country.
Remember this is one small study, using samples from the Baltimore
area. The point is, we need more studies such as this, using a larger
sample size derived from multiple areas around the country, to get a
reliable estimate of the incidence of CD in this country.
Dr. Murray then spoke on the importance of educating the medical
industry to recognize and treat CD. Dr. Murray also spoke about the
importance of forming a coalition to 1) provide research dollars, 2)
increase awareness of the food and drug industry, 3) reduce the
duplicative efforts of the various national and local groups, and 4)
combine all of the talent of the individual support groups on a
national basis.
Bev Ruffo, past president of the Canadian Celiac Association (CCA)
spoke next. Bev was extremely informative on how the CCA began and
how it currently operates.
After Bev spoke we broke into smaller groups to discuss which issues
are important for a national coalition and to prioritize them. We
then regrouped and compared notes. As a group we collectively decided
to focus on these four categories:
1. Public Relations
2. Professional Education
3. Research
4. Regulatory/Commercial Liaison
We decided to form a task force for each of the four categories, and a
steering committee to oversee the four task forces. Each task force
will have a representative for the steering committee. We then broke
into the four task forces based upon individual interests and areas of
expertise. Each task force discussed goals and identified items that
could be accomplished in the next six months. We plan to communicate
via computer, fax, phone, and mail to complete our goals. We decided
to meet again in about six months to review our progress and to
formulate additional goals and plans.
The meeting was very exciting, exhausting, and informative. We should
be very proud of our local group as we have a lot to offer to the
USCC. If anyone is interested in getting involved in this national
effort your assistance would be welcome and greatly appreciated. Just
let me know.
Return to the Table of Contents
Miscellaneous Notes:
---------2----------
Baltimore Conference Tapes: There was an excellent celiac conference
in Baltimore this summer which eight members of our group attended.
At the conference we were promised that audio tape recordings of all
the speakers would be available for a reasonable cost. We recently
received word that the tapes are now available as a set for $45,
including shipping and handling. To order a set of tapes, make your
check payable to Program of Continuing Education/UMAB, and mail it to:
UMMS - Division of Pediatric GI & Nutr., 22 S. Greene St., Box 140,
Baltimore, MD 21201-1595, ATTN: Vicky Roach. Allow four to six weeks
for delivery. These tapes will only be available for a limited time,
so if you want a set don't delay.
Return to the Table of Contents
"Genetics and What's New in Research"
------------------3------------------
a talk by Martin F. Kagnoff, MD
summarized by Jim Lyles
Dr. Martin F. Kagnoff is the director of the Laboratory of Mucosal
Immunology at the University of California at San Diego, and
well-known for his research in celiac disease, particularly with
respect to genetic factors. He gave a talk at the 1995 CSA/USA
conference on October 5, 1995, in San Francisco, California. What
follows are some highlights of Dr. Kagnoff's talk.
Celiac Disease (CD) is associated with small bowel damage, which
occurs when a celiac eats gluten containing foods. "Gluten" is
something of a misnomer. Gluten really refers to the disease-
activating proteins in wheat, and we know there are similar, related,
but somewhat different proteins in other grains that activate CD as
well. However, gluten-free (GF) has come to mean free of the grains
which are toxic to celiacs.
Nutrients are not absorbed properly in an untreated celiac, due to the
damage in the small bowel. This results in a wide spectrum of
different symptoms.
When a celiac consumes gluten, the damage to the small intestine may
be slight or it may be extensive. It depends on how sensitive that
individual is to gluten, and on how much gluten is consumed. However,
it is not just the small intestine that is sensitive to gluten; the
entire digestive tract including the large bowel is sensitive. In a
study done several years ago, wheat was placed at the very bottom of
the small intestine, where celiac damage does not usually occur. This
caused the type of damage that is characteristic of CD. More
recently, Mike Marsh has inserted gluten into the rectum to help in
diagnosing CD. He has found that inflammation and changes in the
rectal lining occur in celiacs exposed to gluten in this fashion.
Dr. Kagnoff showed slides with the two extremes: normal, healthy
villi with small crypts and completely flattened villi with elongated
crypts. He said that there are many in-between situations, where the
villi are only partly gone or partly damaged. A healthy small
intestine has many folds, with villi on the folds, and microvilli on
the villi. Altogether, this provides a surface area equivalent to two
regulation-size tennis courts; this is about 600 times as large as the
surface area inside piece of tubing the same size and length as the
small intestine. As the villi are damaged and the microvilli
disappear in active CD, the absorptive surface is greatly reduced.
The severity of the symptoms varies depending on the amount of
absorptive surface that has been lost.
Another point to consider is: What do you absorb in your small
intestine, and where? One of the common symptoms of untreated CD is
iron deficiency. Some celiacs had iron deficiency for years, but were
not diagnosed until other symptoms began to show up as well. Dr.
Kagnoff has a set of twins as patients that were diagnosed with iron
deficiency at age seven, are short in stature, and wasn't until they
were over 40 that they developed symptoms such as bloating and
diarrhea which finally led to a diagnosis of CD. The reason this can
happen is that iron is absorbed in the very top portion of the small
bowel. If the villi damage is not severe and limited to that area,
then other nutrients are absorbed further down in the intestine and
only iron is malabsorbed. Another common problem with untreated
celiacs is iron malabsorption coupled with calcium malabsorption.
After malabsorbing calcium for years these people are susceptible to
bone fractures, but really don't have that full-blown "picture" of CD
which i s the underlying cause of these fractures.
As the small bowel lining becomes more damaged and abnormal, one
starts to malabsorb fat-soluble vitamins such as D, E, A, and K. As
the disease progresses, water soluble vitamins start malabsorbing as
well. However, if the damage is limited to the first foot or so of
the small intestine, full-blown malabsorption may never occur as the
remaining 20 feet or so if small intestine will continue to absorb
nutrients normally. However, in these cases iron absorption will be a
continual problem as iron is only absorbed in the earliest portion of
the small intestine.
In CD genes, environmental factors, and the immune system all play a
role. Dr. Kagnoff touched on all three of these factors.
Environmental Factors
---------------------
We all know that ingesting certain grains activates CD: wheat, rye,
barley, and if taken in large enough quantities, oats. There is some
debate in some groups as to whether or not oats are toxic to celiacs.
We know that rice, corn, and sorghum are fine, as long as they are not
contaminated by one of the toxic grains. When you look at the plant
ancestry, you find that wheat, rye, and barley all come from a common
ancestor. If you go up one more level, you find a point where oats
also shares a common ancestor. These grains all have a high content
of some alcohol-soluble proteins that are called prolamins. (The
content is somewhat lower in oats.) These prolamins have a very high
content of glutamine and proline, which are two amino acids.
When we talk about a gluten-free (GF) diet, what we are really talking
about are these alcohol-soluble proteins, which are named as follows:
Grain Proteins
----- --------
wheat gliadins
barley hordeins
rye secalins
oats avenins
Note that we are not talking about a single protein. A variety of
wheat may have 40 different gliadins encoded on multiple genes within
the wheat. Some of the chromosome specialists years ago tried to
engineer wheat that would lack the gliadins that active CD; but there
were so many different genes encoding gliadins, on different
chromosomes, that they soon realized it was an almost impossible feat.
Within the wheat gliadins, there have been studies to determine which
part(s) of the gliadin activate CD. Gliadins (and the corresponding
proteins of the other three toxic grains) are proteins made up of many
different building blocks that are called amino acids. We've found
that only a small part of these proteins is needed to activate CD,
about 12-15 of these amino acids; these are called gliadin peptides.
Studies are being conducted all around the world, and some sort of
consensus is being reached as to which peptide sequence activates a
celiac response.
One particular wheat gliadin (alpha-gliadin) has been studied in more
detail. Don Kasarda, of the USDA research facility, and his group
purified this protein, and others at the facility isolated the
nucleotide and peptide sequences for alpha-gliadin. Other groups
around the world have also worked with this single protein. What
they've found is this protein has 266 amino acids, with over 60
glutamines and over 30 prolines. This is very unusual; most proteins
have a fairly random scattering of amino acids.
Tests with celiacs using alpha-gliadin have been conducted to isolate
the actual amino acid sequence that triggers a celiac-type response.
Groups in Norway and England have isolated the same sequence, which
MAY be the part of alpha-gliadin that activates the disease.
Genetic Factors
---------------
Is CD a genetic disease? The answer is probably "yes"; susceptibility
to CD is certainly genetic. Certain genetic factors are required;
without them you don't get CD. However, even with them you might not
get the disease, so CD is not entirely genetic.
Within families of celiacs, depending on which studies you read, the
incidence among other family members is between 2% and 15%. This is a
relatively small number, but still far greater than the incidence in
the population at large. What really points to a very strong genetic
association is the incidence in monozygotic (identical) twins: Where
one twin has CD, at least 70% of the time the other also has CD. The
fact that this incidence is not 100% is another indication that there
are other factors besides genetics involved in CD.
Susceptibility to CD is associated with HLA genes encoded on the sixth
chromosome. The HLA genes are among the most diverse set of genes
encoded in humans or other mammals. They determine and govern why we
are different from one another in terms of our immune system and how
it reacts and responds.
Celiacs nearly always have one of two HLA genes: DQ2 or DQ8. These
genes are relatively common among Caucasians of European descent,
occurring in about 25% of the population. These genes are not found
in Japan or Africa among the blacks; consequently CD is virtually
unheard of in these areas of the world. Most people with these HLA
genes don't get CD, so there is still more to this puzzle than we
currently know. About 95% of the celiac population carry the DQ2
gene, another 5% carry the DQ8 gene, and far less than 1% would carry
anything else.
If a celiac and a sibling share the same HLA genes, there is a 20-40%
chance that the sibling will develop CD also.
There are some studies going on which are trying to induce something
similar to CD in animals. Dr. Kagnoff's group has just submitted one
for publication in which they cloned DQ2 and other HLA genes and put
them into mice. They are beginning to look at how the mice respond to
gliadin.
The Immune System
-----------------
In CD, two types of T-cells come into play. The first type is
intraepithelial T-lymphocytes, which exist between the epithelial
cells. In active CD, one of the striking features is an increase in
the number and density of these intraepithelial T-lymphocytes. These
T-cells were thought to be responsible for the villi damage, but
recent studies suggest that these cells actually help in the growth
and development of epithelial cells. The increase in these T-cells
during active CD may be an attempt to maintain the normalcy of the
epithelial lining. In fact, when the gene responsible for these cells
is deleted from mice, the epithelial lining is totally abnormal.
The T-cells in the lamina propria are the ones responsible for the
villi damage, by reacting to the presence of gliadin. During this
reaction the T-cells release cytokines, and it is the cytokines which
appear to cause the damage to the villi.
Diagnostic Tests
----------------
CD can present with a broad array of symptoms. Often the symptoms are
very subtle and appear to be far removed from the small intestine.
This makes diagnosing CD difficult in many cases.
The blood tests can be useful for screening. Three of the four
antibody tests can be highly sensitive, but only when there is fairly
marked damage to the villi. These tests generally do not come back
positive when the damage is mild. Also, we have to take into account
how often these tests give a false positive. For a while the
endomysial antibody was felt to be nearly 100% specific, i.e., no
false positives. In recent years that number has fallen off some, as
there have been some false positives detected. The bottom line is:
These tests are good as a screening device and to monitor compliance
with the GF diet, but they cannot be used in place of the small bowel
biopsy for diagnosing CD. Dr. Kagnoff does not believe these tests
would be useful in screening the population at large; they are most
useful in screening those in whom there is some suspicion of CD due to
the symptoms.
Next we need to look at HLA Class II DQ gene typing tests. These can
be useful in eliminating the possibility of CD, as CD is virtually
unheard of unless you have one of the two DQ markers we discussed
earlier. Of course, the converse is not true: The vast majority of
those which DO have one of these markers also don't have CD, so all
you can say in that case is that CD remains a possibility.
The HLA typing tests are also useful in determining for the siblings
of a celiac if CD can be eliminated as a potential future concern.
At this point Dr. Kagnoff answered some questions from the floor:
Q: What is the risk of small bowel lymphoma?
A: There is good (but not definitive) evidence that the increase in
lymphoma is related to not being on a strict GF diet. For celiacs
on a strict GF diet, the risk of small bowel lymphoma is not
significantly greater than it is for non-celiacs. The question
is, how much gluten is okay? Dr. Kagnoff has detected
inflammation in biopsies of individuals who only eat a small
amount of gluten. We know from other malignancies that ongoing
inflammation is associated with increased risk.
On the other hand, the overall risk is still very small, even in
studies where people with active CD have eaten gluten for 30, 40,
or 50 years. The risk is real, but the risk of an earthquake in
California is probably higher. However, I still recommend that
celiacs maintain as GF a diet as they can.
Q: What is the risk of colon cancer in celiacs?
A: There is no evidence that there is an increase risk of colon
cancer in celiacs. The increase in risk, which is small, refers
to cancers in the mouth, esophagus, oral pharynx, lymphoma of the
small bowel, and cancer of the small intestine (which is very
rare, even in celiacs). There is no increased risk elsewhere.
Q: What is the possibility of developing a GF grain of wheat?
A: Very unlikely. By the time you eliminated all of the
gliadin-related genes from wheat, I'm not sure there would be much
left.
Q: Are you born with CD, or can it "develop" at any age?
A: First it must be triggered by some event in the environment, such
as a certain kind of flu, stress, etc. Then, once it is
triggered, you continue to have the disease for the rest of your
life.
Return to the Table of Contents
Newsletter Roundup
---------4--------
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 _Celiac News_ :
: --------------------------- :
: Summer '95 Judi Sennett, editor :
: Canadian Celiac Association :
: 6519B Mississauga Road :
: Mississauga, ON L5N 1A6 :
:.....................................:
[The following comes from a paper presented to the Canadian Celiac
Association in June 1995, by Conleth Feighery, Dept. of Immunology,
St. James's Hospital and Trinity College, Dublin, Ireland. I've
summarized one section of the paper--ed.]
When we ingest food proteins, as far as our body is concerned, these
are foreign proteins. Every time the immune system sees a foreign
protein it attempts to react against it. This is important for
getting rid of viruses and bacteria. However, in the case of food, if
we always developed a dramatic response to food proteins we would end
up getting an inflammatory response every time we ate. Hence, the
body has learned to develop a minimal reaction to food proteins.
It is believed that a minimal reaction is achieved by T cells through
the particular cytokines (hormone-like molecules that influence the
behavior of other cells nearby) they release. There are both "good"
cytokines which suppress the immune response, and "bad" cytokines
which encourage the immune response.
An excessive response, or intolerance is believed to be caused by
"bad" cytokines. It is believed that this is what happens in CD. The
normal tolerance to gluten does not operate and instead T cells
produce inappropriate or "bad" cytokines, which end up causing the
changes in the gut which we observe.
...........................................................
: :
: Excerpts from the Houston Celiac-Sprue Support Group :
: ---------------------------------------------------- :
: newsletter: Nov. 1995 Janet Y. Rinehart, President :
: 11011 Chevy Chase :
: Houston, TX 77042-2606 :
:........................................................:
Communion Issue for Catholics: A new edict was published in the
_Committee on the Liturgy Newsletter_, Vol. XXXI, July/August 1995.
It acknowledges the problem celiacs have with communion wafers, but
still presents the position that only low-gluten bread is acceptable
for communion. It is valid to consider oneself participating in full
communion if you drink the wine; however the bread is sometimes dipped
in the wine which would contaminate it for celiacs. Check with your
own priest to see how best to handle communion.
Avoid Temptations: Kellogg's has a new Temptations cereal that does
not contain malt. However, Kellogg's does not advise celiacs to eat
it because it is manufactured on the same line as other gluten-
containing cereals; as a result cross-contamination can be a problem.
Honey Baked Ham contains wheat starch in the glaze, and therefore is
not suitable for celiacs.
................................................................
: :
: Excerpts from the Midlands Chapter 13 Support Group :
: --------------------------------------------------- :
: newsletter: Mar. 1995 Sandra Allen, Secretary/Treasurer :
: newsletter: Apr. 1995 Route 1 Box 707 :
: newsletter: Aug. 1995 Fort Calhoun, NE 68023 :
:.............................................................:
"Make Mine Special" is the name of a Cream of Rice recipe booklet
containing GF recipes. Send your name, address (including zip code)
and 50 cents for postage and handling to Nabisco Foods, Inc., PO Box
8124, Clinton, IA 52736-8124.
Joy's Morning Glory Bed & Breakfast is owned and operated by Joy
Petersen, a celiac, and her husband Merle. They opened in 1992. With
advance notice they accommodate special diets. They've never had a
celiac stay with them, but would certainly be knowledgeable and able
to supply a celiac's needs. They are located in Iowa, about 75 miles
west of Des Moines. Call (712) 764-5631 or write to Joy's Morning
Glory Bed & Breakfast, 4308 Main Street, Box 12, Elk Horn, IA 51531.
A New Drug for Osteoporosis: According to the June 17, 1995 edition
of the Omaha World-Herald, a Creighton University researcher (Dr.
Robert Recker) has found that a new drug reduced the risk of fractured
vertebrae by nearly half among post-menopausal women in a recent
study. The drug is alendronate. Its trade name is Fosamax, a product
of Merck & Co.
..................................................................
: :
: Excerpts from the San Antonio CS Support Group :
: ---------------------------------------------- :
: newsletter: Oct. 1995 Lynn Rainwater, Secretary/Treasurer :
: 1023 Cloverbrook :
: San Antonio, TX 78245-1604 :
:...............................................................:
GF Vitamins: The Gluten-Free Pantry is now offering these:
gluten/lactose-free vitamin supplements: B-Complex, B12 Suplingual,
Buffered Vitamin C, Super Cal/Mag, Multi-Vitamins, Vitalets
Multi-Vitamins for children, Furit C, and Yelets Multi-Vitamins for
teenagers. Call (203) 633-3826 or write to The Gluten-Free Pantry, PO
Box 881, Glastonbury, CT 06033. [Note from Dorothy Vaughan, our
dietitian advisor: It is not necessary to consume supplemental
vitamins and minerals unless a deficiency is identified.]
Return to the Table of Contents
The Vegetable Vault: Sweet Potatoes
------------------5----------------
Reprinted from _The Sprue-nik Press_,
Nov. 1992, first edition
Many people eat sweet potatoes only on Thanksgiving--a pity, since
these tuberous roots are among the most nutritious foods in the
vegetable kingdom. They also possess an intense natural sweetness,
which is produced by an enzyme in the potato that converts most of its
starches to sugars as the potato matures. This sweetness continues to
increase during storage, and when the potato is cooked.
Moist orange-fleshed varieties of sweet potato dominate the market,
but you can also find dry yellow-fleshed types The former are usually
plumper in shape and somewhat sweeter than the latter. Moist-fleshed
potatoes are often incorrectly called "yams". True yams are large
starchy roots grown in Africa and Asia; they are seldom available in
this country. However, common usage has made the term "yams"
acceptable when referring to sweet potatoes.
Because of its rich flavor, the sweet potato's reputation is
(unfairly) that of a caloric treat. In reality, a five-inch baked
sweet potato contains only about 120 calories--no more than a white
potato.
Sweet potatoes are also sold canned or frozen. The canned potatoes
are usually packed in heavy syrup, possibly containing gluten
(candied), although some processors also pack them in water. Canned
sweet potatoes are substantially lower in beta carotene, vitamin C,
and the B vitamins than fresh ones.
Sweet potatoes, which are grown largely in California, Louisiana, and
New Jersey, are sold throughout the year; but the greatest supplies
are available in the fall and early winter. Many stores feature sweet
potatoes around Thanksgiving and Christmas.
Look for potatoes that are heavy for their size. Avoid any that are
not smooth, hard, and free of bruises or decay, which may appear as
shriveled or sunken areas or black spots. Even if cut away, a decayed
spot may have already imparted an unpleasant flavor to the entire
potato. Check the tips, where decay usually begins.
Sweet potatoes are subject to rapid spoilage. To help preserve them,
growers cure them by storing them at a high temperature and humidity
for about 10 days before sending them to market. This process also
enhances their natural sweetness. After purchase, sweet potatoes
should be kept in a cool (55-60 degrees F), dry place, such as a
cellar, pantry, or garage. They should never be kept in the
refrigerator, where they may develop a hard core and an "off" taste.
Sweet potatoes will keep for a month or longer if stored at 55 degrees
F.
Cooked sliced or mashed sweet potatoes can be frozen; just add a
little lemon juice to keep them from darkening and pack them into
freezer containers.
Return to the Table of Contents
Musings from a Longtime Member
---------------6--------------
by Marcia Campbell
Remember how you felt when you finally had a diagnosis for all the
complaints you had been hauling from doctor to doctor? Granted: The
relief of a diagnosis was elating because you knew you were not on
your death bed...yet! But as you left the doctor's office with your
diagnosis and a cheery "just stay on a GF diet and you'll be fine"
ringing in your ears--what do you do now? Well, since we published
the last Shopping Guide in October, I can't tell you how glad so many
people have been to find a definitive list of GF choices to guide them
in shopping for food. I'd like to relate some of the remarks that
have come in the mail with a check and a request for the Shopping
Guide:
"I received your name and mailing address from Nancy Jackson,
University of Iowa. She told me that your celiac group is quite
active and that you have a shopper's guide that is quite helpful."
--Lynda Nelson (Fargo, North Dakota)
"Just a short note to let you know how much I appreciate all the
effort your group went through to put the Shopper's Guide together!
Being a newly diagnosed celiac with lactose and fructose
intolerances presents a major challenge for me! However, knowing
where to start, by using your guide, has made so much difference
for me in how I prepare my 'few foods' left on my very restricted
diet!! I especially appreciated the extended listing of spices and
herbs! So thank you again and yes, you all should be proud of this
Guide!" --Lynda Nelson again, after receiving the guide
"...I'm sure I will save hours of label reading time."
--Beverly Chevalier (Hamden, Connecticut)
"My husband (the celiac) and family are greatly anticipating a trip
to Florida to go to Disney World. As we embark on this adventure I
need to do some meal planning and feel you Shopping Guide would be
of great value. Thanks for your help. God bless us when Celiacs
help Celiacs." --Iva Ruehs (Jesup, Iowa)
"...We sincerely appreciate all the work you people have done. Our
life has been made much easier because of you all."
--Leigh Hornick (Iowa City, Iowa)
"...I was thrilled to discover that the Tri-(City) Celiac Support
Group has put together a list of gluten free products. The other
list I have is not very accurate and terribly inadequate. I heard
that your list is more comprehensive and reliable....Please thank
your group for me for doing the work necessary to put together such
a list. My beautiful 3 year old celiac daughter will forever be
grateful." --Mark Whitney (Chandler, Arizona)
"I would like a gluten free shopping guide. I'm 12 and I think it
would be very helpful to have this guide."
--Christy Woodcock (Wayland, Massachusetts)
"I recently read in the Tri-County Celiac Sprue Support Group's
Sprue-Nik Press which I got from the Listserv on the [Inter]net,
that you have compiled a new shopping guide....I am the Sec/Treas
for the RI/Mass Celiac Support Group for Kids."
--Kelly Leech (Lincoln, Rhode Island)
"Betty Elofson brought a copy of your Shopping Guide back from the
national convention. The Lyles have done a beautiful job putting
information together!" --Pat Mohrbacher (Lakewood, Colorado)
You see, Celiacs are helping Celiacs! And the Shopping Guide (which
has gone to a second printing of 100 copies since the original 275
were presented to our group in October) is one of the most important
tools we have for use in choosing GF foods. We owe much to Jim and
Vicki Lyles for the efforts they made in writing the letters to the
manufacturers and compiling the answers into our Shopping Guide
format. One other useful tool has been the Internet. Jim has our
group on-line and many of the requests came through that forum.
A comment I would like to make is that the requests for the guide also
came through chapters, support groups, conferences, and individuals.
It is apparent that reliable, usable information is much needed. As a
well-organized group we owe it to all celiacs to keep making an effort
to provide the best, most current information possible....to our group
and to all celiacs. That also means that more than a few need to
pitch in with the hard, tedious work of writing letters to
manufacturers, compiling information and publishing what we have
learned. When you are asked to help, please say, "Yes". We all need
each other. (When I say celiacs, I am also including those with
Dermatitis Herpetiformis--since a GF diet is a strict requirement for
DH'ers as well.)
Thank you to the Lyles' for a job very well done.
Return to the Table of Contents
Recipe Page
-----7-----
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Macadamia Nut Torte
5-7 ounces macadamia (or other) nuts 6 large eggs, separated
1/2 cup potato starch 1 cup sugar
1 tsp. baking powder 1 tsp. vanilla
Preheat the oven to 350 degrees F. Chop the nuts finely. Mix in the
potato starch and baking powder. Set aside. Beat egg yolks and sugar
until pale yellow. Set aside. Beat egg whites until siff peaks form.
Fold the yolk mixture in with the egg whites. Sprinkle the nut
mixture on top and fold it in. Fold in the vanilla.
Pour the mixture into an ungreased tube pan. Bake for 35-40 minutes.
Invert the pan on a bottle to cool. Cover with plastic wrap until
ready to serve. Dust the cake with powdered sugar.
This recipe came from Joan Kulka.
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Potato Flour Cake
4 eggs, separated 1/2 cup potato flour or starch
1 cup sugar 1 tsp. GF baking powder
1/2 grated lemon rind and juice
Preheat the oven to 350 degrees F. Beat the egg yolks. Add the
sugar, then the lemon rind and juice; continue beating until smooth.
Set aside. Beat egg whites until stiff enough to hold up in peaks,
but not dry. Fold the egg whites into the egg yolk mixture. Fold in
the potato flour and baking powder.
Bake in a tube pan with a greased bottom for 30 minutes, or until
golden brown. Invert the pan on a bottle to cool.
You can substitute 1/4 tsp. lemon flavor and 1 Tbsp. lemon juice for
the fresh lemon.
This recipe came from Joan Kulka.
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Pecan Pie
1 cup sugar 3 eggs, beaten
1/2 cup corn syrup 1 cup pecans
1/4 cup melted butter 1 unbaked GF pie shell (9 inch)
Preheat the oven to 400 degrees F. Mix the sugar, corn syrup, and
butter. Add the eggs and pecans. Pour the mixture into the pie shell
and bake for 10 minutes at 400 degrees F. Then lower the oven
temperature to 350 degrees F and bake for another 30-35 minutes.
Note: Donna Jo's dream pastry recipe in Bette Hagman's second book,
More From the Gluten-Free Gourmet, can be used for the pie shell.
This recipe came from Vicki Lyles.
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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).