THE SPRUE-NIK PRESS
Published by the Tri-County Celiac Sprue Support Group,
a chapter of CSA/USA, Inc. serving southeastern Michigan
Volume 7, Number 4 May/June 1998
**********************************************************************
..................................
: What's Inside :
: ------------- :
: Miscellaneous Notes :
: NIH Meeting on CD Held :
: If Not For the Biopsy :
: A View From College :
: Newsletter Roundup :
: Recipe Page :
:................................:
References
Disclaimer
Miscellaneous Notes:
--------------------
From the Editor: _The Sprue-nik Press_ got its start in November
1992, under the guidance of Jeanne Boldt. Since then it has blossomed
and grown, with articles and short pieces from many group members. In
the last few years we've included items from many other newsletters
and from the Celiac e-mail list on the internet. Items from our
newsletter have found their way into dozens of other newsletters
around the country, and an online version of our newsletter has
appeared in the reference files of the Celiac e-mail list since
February of 1995. This cooperation and sharing between so many US and
Canadian groups is a fine example of our motto, "Celiacs Helping
Celiacs."
This is the 48th issue of this newsletter, marking over 600 pages of
articles, recipes, conference talk summaries, reports from the four
presidents we've had over those years, poems, cartoons, and many other
tidbits. All of you make this possible with your contributions, along
with the 40 other US and Canadian support groups with whom we share
newsletters.
Each of you has a story to tell, or some hints to pass on. We share
these ideas verbally at meetings. Why not take a few minutes and jot
your ideas down? Whether you send a finished article or a set of
notes, we can use the material for the benefit of other group members,
and all the other celiacs that see our newsletter. E-mail your ideas
to lyles@tir.com--Jim Lyles
-=-=- -=-=-
_Sully's Living Without_ is a new magazine meant to be a lifestyle
guide for people with food and chemical sensitivities. The premiere
issue (Spring 1998, 60 pages) focused mostly on celiac disease and the
gluten-free diet. This is not surprising, as the publisher (Peggy A.
Wagener) herself is gluten-intolerant, and Dr. Joseph Murray is one of
the medical advisors for the magazine. Also, Carol Fenster (author of
_Special Diet Solutions: Healthy Cooking Without Wheat, Gluten, Dairy,
Eggs, Yeast, or Refined Sugar_) is a contributing food editor for the
magazine, and Janet Rinehart (CSA/USA president) and Elaine Monarch
(Celiac Disease Foundation executive director) are on the magazine's
advisory board. So it looks like articles of benefit to celiacs will
continue to appear in future issues. The magazine is published
quarterly. The subscription rate is $12 for one year or $20 for two
years. To subscribe, write to Sully's Living Without, Inc., 1840
Industrial Drive, Suite 200, Libertyville, IL 60048-9400; call 6
30-415-3378; or fax 630-493-9511.
-=-=- -=-=-
Recipe Hint: Some recipes call for chow mein noodles, which are NOT
gluten-free (GF). You can usually substitute GF potato sticks in
place of the chow mein noodles. Depending on the brand you use, you
may have to cut back on the salt used in the recipe. For example, in
a no-bake cookie recipe I recently made, I used unsalted peanuts to
compensate for the extra salt in the potato sticks.--Vicki Lyles
-=-=- -=-=-
_Vegetarian Times_ Magazine has an article on allergies in their May
issue, which includes information on gluten intolerance. They even
included a few recipes: New Fashioned Pot Pie (the crust for this
looked like a good one), Kale Soup with Black Eyed Peas (the name does
not do it justice), and Cranana-Nut Bread (this one looked like a good
twist on the tired old banana nut breads we've been eating). The
newstand price is $2.99, which is well worth it for this issue.[1]
-=-=- -=-=-
You know you're a celiac if...
...you've ever been caught licking a discarded Twinkie wrapper.
...at Christmas, visions of guar gum dance in your head.
...you've ever had to give a doctor a crash course in Celiac 101.
...you weep at picnics, parties, receptions and fast food joints.
...you weep at breakfast, lunch, and dinner.
...you've ever "brown bagged it" to an elegant dinner engagement.
...a 7 Course Meal is a 1 Course Meal for you. Lettuce.
--Diane Wright
Return to the Table of Contents
NIH Meeting on Celiac Disease Held
----------------------------------
by Ann Whelan, editor/publisher of Gluten-Free Living
reprinted from the April 1998 newsletter of the
Westchester Celiac Sprue Support Group, White Plains, NY
On March 10th, more than 20 members of the celiac community and celiac
disease (CD) specialists attended a meeting of the Digestive Diseases
Intragency Coordinating Committee, a part of the National Institute of
Diabetes and Digestive and Kidney Diseases (NIDDK).
The meeting, held to update the current status of CD, was chaired by
Jay Hoofnagle, MD, Director of the Division of Digestive Diseases and
Nutrition at the NIDDK. At the meeting, presentations were made by
Martin Kagnoff, MD, Joseph Murray, MD, Alessio Fasano, MD, and Frank
Hamilton, MD.
Dr. Kagnoff is a gastroenterologist and Professor of Medicine at the
University of California, San Diego. He spoke about his research into
the genetics of CD, focusing on the pathogenesis. Dr. Kagnoff is
well known for his research into the genetics of CD, and several of
his studies have been funded by the National Institute of Health
(NIH).
Dr. Murray, Associate Professor of Medicine and clinician at the
University of Iowa Hospitals and Clinics, described his experience
with CD both in Iowa and in Ireland, noting that his interest in CD is
clinical. He emphasized what he called the "Classic II" symptoms,
meaning the actual symptoms patients have today and the "Classic"
symptoms many doctors may be familiar with. He said, "The rate of
diagnosis is proportional to suspicion."
Dr. Murray described the CD experience at the University of Iowa from
1985 to 1997, presenting statistics that indicated a steep increase in
diagnosis. "At our institution, CD is an adult disease," he said,
"and is now seen as frequently as Crohn's Disease."
Anticipating the question, "Why look for CD?", Dr. Murray gave his
reasons: preventing lymphoma and osteoporosis, as well as resolving
fatigue and nonspecific symptoms and shortening the current
significant delays in diagnosis.
Dr. Fasano's presentation was called "Where Have All the American
Celiacs Gone?" He described what has happened in the field of CD in
various parts of the world, including some parts of the United States,
but emphasized the European experience. Dr. Fasano noted that plans
are already underway in Italy to screen all seven-year-olds in 1999.
Dr. Fasano explained why an epidemiology study is critically needed
in this country. He pointed out the benefits of such a study for four
groups:
* The American health care community: lower health care costs,
increased awareness of CD, and more knowledge of its "protean
manifestations in the US".
* Participating physicians: publications, more patients, and
increased credibility.
* The American people: the prevalence will be established and CD
will be diagnosed more quickly.
* Celiac patients: free screening of first-degree relatives,
federal support for dietary and drug regulations, an improved
food supply, stronger local supports groups, and more funding for
celiac research.
Dr. Fasano added that such a study, whatever its findings, would end
in a win-win situation for everyone. If the study shows that CD is
underestimated in this country, patients will benefit as physicians
begin looking for the problem with the knowledge that they might well
find it. If the study shows CD is indeed rare in the United States,
"it's even more exciting because we will be able to figure out why."
Dr. Hamilton, chief of the Digestive Diseases Program Branch at the
NIDDK, briefly described the CD research, to date, that has already
been funded by the NIH. He said $1.4 million has been granted for
such research, adding that over the last five years, "we have seen
growth in the funding of CD." He said he was pleased funding has
increased, and felt a lot of work has to be done.
Dr. Hamilton ended by saying, "Today's meeting will serve as an
impetus for a partnership between the NIH, academe, and the lay groups
to foster more research." He added that it was important for the
investigators and support group representatives present at the meeting
to get the word out, referring to information about CD.
These talks were followed by a round table discussion, between the
members of the committee and the presenters. Later, audience comment
was invited. The committee showed an interest in the current adult
nature of the disease, the changing symptoms, current testing methods,
and identification of the most critical research needs. Patients who
spoke were anxious to let the committee know what they felt were the
important concerns in the real world.
At the end of the meeting, Dr. Hoofnagle said his division will
prepare a short, pithy plan, then present it to Drs. Kagnoff, Murray,
and Fasano. He noted that the important issues are pathogenesis,
delivering the message to physicians, clinical research issues, and
pediatric health concern.
Some quotes from the meeting:
* Elaine Monarch: "There is a general lack of knowledge,
awareness, and interest in CD among the medical profession. We
celiacs can go for years with substantial symptoms but not
diagnosis....The cost to the medical community is enormous."
* Joseph Murray, MD: "There is more than one gene involved in CD.
Most Europeans are homogenous. Here we have a mongrelized
population. What happens when you mix? How much does it change?
Our mongrelized population may be at risk at a later age."
* Martin Kagnoff, MD: "The issue of other genes is not at all
clear. Like Joe [Dr. Murray], I see adult celiacs. Their time
delay to diagnosis is not exaggerated, but what is striking is
the lack of knowledge of doctors, even at the University of
California. They really are not aware of this disease."
* Alessio Fasano, MD: "We receive 10-15 calls a day. The vast
majority are self-diagnosed. They say, 'I know more than my
gastroenterologist.'"
* Peter Green, MD: "We need to emphasize education of
gastroenterologists. At my institution [Columbia-Presbyterian
Medical Center in New York City], doctors are not used to looking
at the duodenum....We need to educate many levels of the medical
community and tell them, 'If you don't recognize something, take
a biopsy.'"
* Sue Goldstein: "I'm concerned about the people who have not yet
been diagnosed and the reasons why a physician won't consider CD.
It all boils down to: 'it's rare and you can't have it.'"
In addition to the speakers, the following were among those who
attended:
Phyllis Brogden, celiac, founder and chairperson of the Greater
Philadelphia Celiac Sprue Support Group.
Winnie Feldman, celiac, Celiac Disease Foundation [Los Angeles].
Kenneth Fine, MD, gastroenterologist/ researcher at Baylor
University Medical Center in Dallas.
Al Fornace, MD, celiac, National Cancer Institute.
Sue Goldstein, celiac, founder, and advisor, Westchester Celiac
Sprue Support Group.
Peter Green, MD, clinician/researcher at Columbia-Presbyterian
Medical Center in New York City.
Joanne Hameister, celiac, former chairperson, Western New York
Gluten-Free Support Group.
Ivor Hill, MD, clinician/researcher at Bowman Gray School of
Medicine, Winston-Salem, North Carolina.
Beth Hillson, celiac and proprietor of the Gluten-Free Pantry.
Karoly Horvath, MD, clinician/researcher at the University of
Maryland School of Medicine in Baltimore.
Marge Johanneman, celiac, CSA Kentucky state coordinator.
Pam King, University of Maryland.
Bob Levy, celiac in the Washington, DC area, and Ruth Levy, spouse.
Jax Lowell, celiac and author of Against the Grain.
Elaine Monarch, celiac, founder and executive director of the
Celiac Disease Foundation.
Selwyn J. Monarch, board of directors, Celiac Disease Foundation.
Diane Paley, celiac, governing board of CSA/USA.
Michelle Pietzak, MD, pediatric gastroenterologist at Children's
Hospital, Los Angeles.
Connie Tur, celiac, president of Greater Louisville Celiac Sprue
Support Group.
Ann Whelan, celiac and editor/publisher of Gluten-Free Living.
[_Gluten-Free Living_ is a national newsletter published to provide
help and information for those with CD or Dermatitis Herpetiformis and
the professionals who treat them. Subscriptions are $29 for one year
and $49 for two years. Write to Gluten-Free Living, PO Box 105,
Hastings-on-Hudson, New York, NY 10706.]
Return to the Table of Contents
If Not For the Biopsy...[2]
---------------------------
by Christine Duncan
My child is a biopsy-proven celiac, but he never had any of the
obvious celiac symptoms. No diarrhea, no gas and bloating, no
constipation--none of that stuff. His behavior was terrible. He was
constantly irrationally angry. You never knew what would set him off.
Someone getting between him and the TV set could set off a storm that
would last hours. His only complaint was that he felt that he
couldn't swallow well. He refused pills, meat or anything with a
tougher consistency than yogurt or cooked noodles. I discussed this
with both his pediatrician and his allergist and they felt the problem
was psychological. This seemed reasonable as he had had several
episodes where his throat closed due to an allergic reaction.
But over the years his behavior worsened. Our other children were
afraid of him as was I. He was constantly being suspended from
school. His grades were in the dust. We tried counselors, who sent
us to psychologists who sent the child to a psychiatrist. My son was
put (involuntarily) in a mental hospital. He returned home and we
were told not to waste any more money on counseling. He was not
engaged in treatment.
We became our city's coordinators of Tough Love in order to cope.
Tough Love's policy is to call the police when the child is violently
out of control--so we did. The police came to know us only too well.
They advised us to get the child out of the home for the sake of our
other children.
Meanwhile, I still felt that food was the problem. Allergy testing
revealed nothing, but my son was constantly hungry. And the words
that I most dreaded to hear out of his mouth were "I'm starving."
Those words presaged some of his worst problem times. I went back to
the pediatrician without my son, and told the doctor that I wanted a
swallow test. Previously, I hadn't known that could be done, but a
friend had had his daughter tested and it gave me the idea.
The doctor told me she would do it but that she felt my son had a true
genetic mental illness. This would not solve the problem. The test
revealed that my son had a severe stricture of the esophagus. He was
sent immediately to a pediatric gastroenterologist. And when he did a
biopsy in the course of stretching the esophagus, he found classic
signs of celiac disease.
Even then, the gastroenterologist did not believe it. My son showed
no signs of celiac disease, he said. He was thin, but he was not
terribly short. And as I mentioned he had none of the usual
gastrointestinal signs. There were signs that my son had
gastroesophageal reflux, but the child never felt anything. His
receptors had evidently been burned out.
The gastroenterologist ordered tests. My child was negative on every
thing but the IgG. Because of that, the gastroenterologist hesitated
again. But he talked with my husband and me, and decided on a trial
period of the GF diet. Thank God he did.
My son's behavior changed within a very short period of time. At
first I didn't dare to believe it. Then other people made comments.
They noticed too. His grades went up. He had the follow-up biopsy
after three months and it showed vast improvement. The
gastroenterologist was convinced too.
There is a reason that the biopsy is the gold standard for diagnosis.
If the blood test results are in any way equivocal, and you have
doubts, please get the biopsy. Trust yourself. No one knows you or
your child like you do. If the biopsy is also negative, you can
breathe a sigh of relief. It won't do any lasting damage. If the
biopsy is positive, you have the satisfaction that you caught it as
early as you could.
Return to the Table of Contents
A View From College
-------------------
by Josh Marks
reprinted from the Dec. 1997 newsletter
of the Westchester Celiac Sprue Support Group
When I was diagnosed with Celiac Disease, I didn't understand exactly
what that meant. I was told, like so many other celiacs, "Oh, you
just have to eliminate gluten from your diet." The doctor made it
sound as if it was no big deal. However, I soon realized that my
assumption was wrong.
I had just turned twenty-one and it was at the beginning of my
sophomore year of college when I found out I had Celiac Disease. As
most college students do, I lived on pizza, bagels, muffins, and
sandwiches. Also, I frequently attended a number of parties where I
enjoyed the beer and grain alcohol. I didn't even realize the extent
to which I had to change my life. The only cooking I ever did was
making eggs on Sunday mornings. Once I found out that everything I
ate contained gluten, I knew that I needed to make some major
adjustments.
First, I had to learn how to cook, which turned out to be pretty easy.
The major adjustment I faced was social situations. At parties and
formal dinners, I found that there was nothing I could eat and no
alcohol I could drink. Now, my mother didn't have too much sympathy
for my inability to digest alcohol, but most college students will
tell you that drinking is a major part of college life. I would feel
very awkward at parties when I had to explain why I had to turn down a
beer. When going to a restaurant on a date, I hated explaining that I
couldn't eat anything on the menu. I became very self conscious and
as a result, I rarely attended any social gatherings. I felt so bad,
that I barely went out at all. In addition, before my disease, I was
accustomed to grabbing a bagel or slice of pizza between classes.
However, after I was diagnosed I wasn't able to do that anymore. In
fact, I would not eat anything all day and just wait until I got back
to my apartment to broil a chicken breast so I could e at something.
My not eating and self-pity lifestyle made things in school much
worse. I would get annoyed and irritated by people and events that
never bothered me before. I became very short tempered and didn't
want to deal with anything or anybody. My grades and class work were
affected. Every time I sat down to study, all I could think about was
how angry I felt. I even stopped attending class because I couldn't
learn anything. The only thing that entered my mind was how hungry I
was and the food I could eat. It was definitely no way to live and
required a change.
My routine of starving myself all day and not going out lasted about
two depressing months. When I was close to going insane, I was forced
to make a decision. I could let this lifelong disease control me or I
could get my act together and control my disease. I made the decision
to get my act together and kick my disease's butt. I learned how to
cook food that I could eat. Also, I would prepare gluten-free
sandwiches and bring them with me to school. When I went to
restaurants, I boldly brought my own bread and cookies. My attendance
at social functions increased and I even found several items that I
could eat or drink. Sometimes, I would even bring my own potato vodka
and share it with everyone. If a lot of my friends were going out, I
would eat something at home first to subside my hunger. Then, with my
friends, I would order something simple like fries or potato skins.
[Make sure there is no cross-contamination in the frying oil from
breaded items--ed.] My situation started to get a lot better.
As a result of my new control over my disease, I became much more
confident. I didn't mind answering questions like "You can't have
bread! What can you possibly eat?" I learned to laugh at these
questions and give a friendly reply. I even realized some positive
things about my situation. Becoming a celiac made me more aware of
nutrition. Ironically, my disease has made me become a healthier
person.
Now, when I am faced with questions about my disease, I answer them
and change the subject. I don't insist on explaining how difficult it
is, and how lucky everyone else is that they can eat all kinds of good
foods. This disease affects a person's everyday life. No one
realizes the role that food plays in his/her life until it is taken
away. I could let myself get depressed over the situation, or I could
accept it and think about other aspects in my life. I decided a long
time ago that in order for me to be happy, I need to face my
circumstances with a positive attitude. When I start getting down
about my disease, I try and concentrate on the good aspects of my life
and, thank God, there always are. If I don't, then my disease will
pollute my life and will make me a bitter person. I definitely don't
want that to happen. Adjusting has been and still is very hard.
Fortunately, as my everyday routine continues, things get much easier.
Recently, I have stopped desiring food I used to enjoy. Bakery goo ds
never enter my mind. Even pizza doesn't seem so good anymore.
Occasionally, I get frustrated and annoyed. When that happens, I just
think that I am a normal human being who has been dealt a certain hand
and I am living with it. Actually, if I may say so, I am doing a damn
good job.
My good friends know that I can't have certain foods, so they have
stopped offering them to me. Sometimes, they even look out for my
diet restrictions, which I take as a sign that they care. Now, when I
go out on a date or even with some friends, I find it to be no big
deal to explain what I can't eat. Actually, I turn things around and
emphasize the food I can eat. I make my situation sound positive
which makes everyone, including myself, feel more comfortable. That
is the most important, for me to be at ease with my situation.
A year ago when I was diagnosed, I never imagined that I could be
handling things the way I do. Now, I see no other way to approach my
situation. I feel a hundred times better than I have in the past four
years. I was able to cure myself from constant episodes of pain and
fatigue and replace them with humor and rice crackers. I know what I
can and can't have and because of it, I feel great. I love living
without pain, and I have so much energy that I sometimes don't know
what to do with all of it. The way I see it, CD all depends on how a
person looks at it. I am able to view it on a positive note only
because I choose it that way. I can't imagine living any other way.
[Josh Marks is an active board member of the Westchester Celiac Sprue
Support Group, and has served as an invaluable source of information
and support to other celiacs, especially those of college age. We
thank Josh for his very honest article.--the Westchester CSSG
editors.]
Return to the Table of Contents
Newsletter Roundup
------------------
Compiled by Jim Lyles
This section contains excerpts from newsletters produced by other
celiac groups.
........................................................
: :
: Excerpts from _Celiac Connections_ :
: ---------------------------------- :
: March 1998 Katie Marschilok, editor :
: April 1998 Capital District Celiac Support Group :
: 4 Fairlawn Lane :
: Troy, NY 12180 :
:......................................................:
Congratulations to Dr. Peter Green and his colleagues. Six of their
abstracts were accepted for presentation at Digestive Disease Week in
New Orleans this May. This is the world's largest international
meeting of gastroenterologists and related specialists. The accepted
abstracts are:
"Screening of First-Degree Relatives for Celiac Disease in the US"
"Bone Mineral Density in Patients with Celiac Disease--a US Study"
"Celiac Disease in the Elderly--Experience in the US"
"Small Intestinal Malignancy and Celiac Disease"
"Refractory Celiac Disease is Due to Celiac Disease"
"All that Scallops is not Celiac Disease"
The first abstract refers to a study involving first degree relatives
of people who attended a celiac support group meeting. The subjects
included 47 parents, 35 children, and 26 siblings of celiacs (one was
both parent and daughter), 107 subjects altogether. All claimed to be
clinically asymptomatic. Blood samples from the subjects were tested
for EMA, IgG AGA, and IgA AGA. 33 subjects had elevated IgG and/or
IgA AGA levels. Of these, another 7 also had positive EMA. 4 of
these 7 had biopsies that were abnormal and consistent with the
diagnosis of celiac disease (CD). Also, one of the EMA-negative
subjects with elevated IgG AGA was biopsied and found to have partial
villous atrophy. These findings are similar to data reported from
Europe, suggesting that CD is underestimated in the USA.
-=-=- -=-=-
Boston Market recently sent a "Food Allergy Information" sheet, which
included this list of gluten-free (GF) products:
butternut squash
rotisserie chicken
cranberry relish
creamed spinach
fruit salad
jumpin juice squares
mashed potatoes
steamed vegetables
zucchini marinara
For more information, call 800-356-7000.
-=-=- -=-=-
Hillshire Farms 97% Fat Free Sausage and Hot Dog products should be
AVOIDED by celiacs. The remaining Hillshire Farm Smoked Sausage, Deli
Select, Hot Dog, Bacon, and Ham products are GF. For more
information, call 800-328-2426.
...............................................................
: :
: Excerpts from the Gluten Intolerance Group of North America :
: ----------------------------------------------------------- :
: newsletter: May 1997 Cynthia Kupper, editor :
: newsletter: 3rd Quarter 1997 PO Box 23053 :
: newsletter: 1st Quarter 1998 Seattle, WA 98102-0353 :
:.............................................................:
Gluten-Free Stickers are available for marking GF in your pantry. The
stickers are 3/4-inch in diameter, fluorescent green, and have "GF"
printed on them. The cost is $2 for a sheet of 120 stickers,
including postage. Write to Gluten Intolerance Group of North
America, PO Box 23053, Seattle, WA 98102-0353.
-=-=- -=-=-
Product Information:
* Nupro (R) Prophylaxis Paste is free of gluten and soy, according to
Dentsply International Preventative Care (as of June 1997, call
800-989-8825 to verify). All grit textures are gluten-free.
Many dentists use this dental care product.
* Arby's Restaurants: A letter from Triarc Restaurant Group, dated
Jan. 26, 1998, indicates that Arby's signature roast beef is
gluten-free (GF), as are the "natural" baked potatoes and cheddar
cheese sauce. (The modified food starch in the cheddar cheese
sauce is from corn.) For more information, call 954-351-5100.
* Cascade Fresh(r) Yogurt: A letter dated Feb. 3, 1998, states no
preservative, refined sugars, artificial sweeteners, colors,
flavors, or additives are used. This yogurt is sweetened with
fruit juice concentrate. The "natural flavors" include only
concentrates of the fruit listed on the label. Cascade Fresh
yogurt is GF, as are the fruit juice concentrates added to it.
-=-=- -=-=-
Ask the Professionals:
Question: Does a person with celiac disease (CD) need to be concerned
about antibiotic therapy for any reasons? Short term course or
long term course? The type used?
Dr. Joseph Murray (University of Iowa) answers: Most antibiotics are
gluten-free (GF) but not all. Ask the pharmacist to check for you.
If they are needed, then antibiotics should be taken. Antibiotics
have gastrointestinal (GI) side effects but they are no more or
less common in celiacs than in "glutons" (those eating gluten).
Diarrhea is the most common side effect.
Question: Why do some listings for foods to avoid on a GF diet
include canola oil and others don't? Is there a problem with guar
gum?
Cynthia Kupper, CRD, CDE answers: Canola oil is made from rapeseed.
Rapeseed is GF; however, some people have GI symptoms because of
using products, such as canola oil, due to sensitivity (an allergic
type reaction) to the food. Sometimes it will appear on a "to
avoid list" for people with CD. This may have been done to help
decrease confusion in knowing what is a "gluten contamination"
reaction and what is a "general sensitivity" to foods. When you
see information that is conflicting like this, it is always best to
ask for a clarification.
Guar gum is GF. It is ground from the endosperm of the Cyanopois
tetragonoloba plant. It is primarily a carbohydrate that is
soluble in hot or cold liquids, but insoluble in oil and greases.
It is tasteless and odorless. It has 5-8 times the thickening
power of starch. It is used like xanthan gum in products to
thicken, stabilize, emulsify, and bind or "glue" together baked
goods and frozen desserts such as ice cream. In medications it is
used as a binder.
Guar gum does have a natural laxative effect. In some individuals,
the appearance of loose stools or diarrhea may be confused with a
reaction to gluten. Other ingredients, such as sorbitol and
mannitol (commonly found in sugar-free foods), also can induce
diarrhea. In some medical situations sorbitol is prescribed to
ease constipation. The gas, stomach aches, and diarrhea are a
result of the ingredient, not gluten ingestion. The amounts of
these ingredients that will cause diarrhea vary with each person.
Some may react as the result of eating one small muffin made with
guar gum or a couple of pieces of candy made with sorbitol; others
may need to eat larger quantities for the same effect. When using
products containing guar gum, sorbitol, or mannitol, remember that
a change in stools and GI symptoms may only be a result of this
additive, meaning simply that you are sensitive to small quantities
of these ingredients and should be careful about the amount you
use.
.........................................................
: :
: Excerpts from _K.C. Gluten-Free Advocate_ :
: ----------------------------------------- :
: April 1998 Joe & Janna Denison, editors :
: Greater Kansas City Chapter of CSA/USA :
: 7911 Little Lane :
: Pleasant Valley, MO 64068-9187 :
:.......................................................:
A Psychological Aspect of CD: Diet maintenance is not the only aspect
of celiac disease (CD) that needs addressing. Those with CD also deal
with a grief process common with any life-changing event. The
feelings do not necessarily go in order and not everyone experiences
all of them.
First, denial about having the disease and the all-encompassing
changes that take place is common. During the denial phase, those
with CD continue eating whatever they want because the ramifications
have not set in. The thinking is, "I'm already sick, what is one
cookie or slice of pizza going to hurt?"
Next, anger and depression about the situation sets in. "Why did this
happen to me?" runs through the mind of the celiac. There are many
frustrations associated with CD that add to the anger and depression.
Eating out, in a restaurant or someone else's home, triggers anxiety
over having to explain once again the foods that are acceptable and
not.
Finally, there is acceptance that this is not really a bad disease to
have, if you are going to have one. There are no needles, no pills,
and no hospital treatments; only a diet to control the symptoms.
Frankly, the alternative to the diet (diarrhea, skin rash, cramps) is
incentive enough to do everything possible to keep toxic gluten from
contaminating your diet.--Kristina Dilks
........................................................
: :
: Excerpts from the Healthy Villi Celiac Support Group :
: ---------------------------------------------------- :
: newsletter: Spring 1998 Melinda Dennis, editor :
: 95 Orchard St., #2 :
: Somerville, MA 02144 :
:......................................................:
Caines: The following Caines products are gluten-free (GF), as of
Dec. 9, 1997: All Natural Mayonnaise, Light Reduced Calorie
Mayonnaise, Reduced Fat Mayonnaise Dressing, Fat Free Mayonnaise
Dressing, Tartar Sauce, Sweet Relish, Kosher Dill Pickles (whole,
chips, spears, sandwich cuts), and Sweet Cucumber Pickles (chips,
sandwich cuts). The distilled vinegar and modified food starch used
in Caines products are both derived from corn. For more information,
call 508-772-0300.
-=-=- -=-=-
Rice Facts: For some fun online rice facts, try this website:
http://www.usarice.com.
...........................................................
: :
: Excerpts from _Lifeline_ :
: ------------------------ :
: Spring 1998 (Vol. XVI, No. 2) Leon Rottmann, editor :
: CSA/USA, Inc. :
: PO Box 31700 :
: Omaha, NE 68131-0700 :
:.........................................................:
Hypothyroidism: Individuals are at a higher level of risk for
hypothyroidism if they have another autoimmune condition such as
celiac disease (CD), type I diabetes, or rheumatoid arthritis.
Symptoms include lethargy, forgetfulness, sluggishness, loss of
interest in normal daily activities, feeling cold or tired, hair
growing slowly or becoming dry and brittle, wounds taking longer to
heal, itchy skin or dryness not helped by oils and lotions,
constipation, muscle cramps, and, in women, increased menstrual flow.
Mild hypothyroidism may not cause any symptoms. The treatment is
synthetic thyroid hormones, taken as a daily pill for the rest of your
life. Thyroid failure can be progressive; as time goes on the dosage
may need to be increased, so a yearly checkup is important.
Return to the Table of Contents
References
----------
[1] "Good Article in Vegetarian Times Magazine", Lynda Swink, from the
CELIAC Listserv archives on the Internet, posted April 22, 1998. To
obtain a copy, go to http://maelstrom.stjohns.edu/archives/celiac.html
and click on "April 1998, week 4."
[2] "Re: Testing 1st deg relatives, irritable Celiac children", from
the CELIAC Listserv archives on the Internet, posted March 22,
1998. To obtain a copy, go to http://maelstrom.stjohns.edu/archives/celiac.html
and click on "March 1998, week 4."
Return to the Table of Contents
Recipe Page
-----------
**********************************************************************
Lily's GF Pie Crust
1/3 cup brown or white rice flour
1/3 cup tapioca flour
1/3 cup potato starch
1-1/2 Tbsp corn starch
1/3 tsp. salt
1 tsp. xanthan gum
1 Tbsp. sugar
1/3 cup (5 Tbsp.) butter
1 egg, beaten
1/2 to 1 tsp. apple cider vinegar
Have eggs and butter cold for best results. Combine flours, starches,
salt, xanthan gum, and sugar into a mixing bowl. Cut cold butter into
slices and then work it into the flour mixture with hands or a pastry
cutter until the dough feels slightly moist and begins to hold
together.
Add the beaten egg and vinegar to the flour mixture and stir with a
spoon or fork until it begins to stiffen. The dough will be quite
soft at first but will firm up. As it firms up, form it into a ball
and work it a little with your hands. Use a little tapioca flour if
necessary to keep your hands from getting sticky.
Roll the dough out between two pieces of wax paper, turning and
peeling off paper as necessary to smooth out wrinkles. Leave the
paper on the pie dough to turn it. When it is ready for a pie pan,
peel the top layer of paper off, hold the lightly greased pan over the
dough, and slip your other hand under the bottom paper and dough.
Lift it into the pan as you flip it all over.
Smooth the dough into the pan before removing the wax paper. Again
peel it off; don't lift it off. Crimp edges as desired. Prick with a
fork if a baked pie shell is desired and bake at 350 degrees F for
12-15 minutes.
Double the ingredients for a two-crust pie. Don't attempt to fold the
top pie crust. A two-crust pie will bake one hour or longer.
This recipe came from _Lifeline_, Summer 1996, pg. 5, and was
previously printed in the July/Aug. 1996 issue of _The Sprue-nik
Press_. It is Lily Mae Patten's recipe.
**********************************************************************
Joan's Pie Crust
1-1/2 cups GF flour mix**
1/4 tsp. cream of tartar
1/2 tsp. salt
1/2 cup butter-flavored Crisco
1/3 cup plus 1 Tbsp. milk
1 egg
Mix the flour, cream of tartar, and salt. Cut the Crisco with the
flour mixture.
Beat the egg in the milk. Add the milk mixture to the flour mixture
and shape into a ball. Divide the ball in half and roll out each half
to fit the pie pan.
This recipe comes to us from Joan Kulka.
**********************************************************************
Pecan Pie
1 cup white corn syrup
1 cup brown sugar
1/3 tsp. salt
1 cup melted butter or margarine
1 tsp. GF vanilla
3 eggs, beaten
1 9-inch unbaked GF pie shell
1 heaping cup pecans or walnuts
Mix the syrup, sugar, salt, butter, and vanilla together. Mix in the
beaten eggs. Pour the mixture into the pie shell. Put the nuts on
top of the filling. Bake at 350 degrees F for 45 minutes.
This recipe comes to us from Joan Kulka.
**********************************************************************
Pineapple Pie
1 20 oz. can crushed pineapple
1/2 cup sugar
2 tsp. corn starch
1/2 tsp. lemon juice
1 Tbsp. butter
2 unbaked GF pie shells (one for the top)
Prepare the bottom pie shell. In a pan mix all the ingredients except
the pie shell. Cook for about 7 minutes. Pour the mixture into the
bottom pie shell. Dot with butter. Put on the top crust. Brush the
top with milk and sprinkle lightly with sugar.
Bake at 375 degrees F (350 degrees for a glass pie pan) for 30 minutes
or until golden brown.
To make a pineapple sauce, stop cooking after 7 minutes and add
butter. The resulting sauce can be served on cake or ice cream.
This recipe comes to us from Joan Kulka.
**********************************************************************
Libby's Pumpkin Pie
1 unbaked GF pie shell
2 eggs
1 16 oz. can solid pack pumpkin
3/4 cup sugar
1/2 tsp. salt
1 tsp. ground cinnamon
1/2 tsp. ground ginger
1/4 tsp. ground cloves
1 12 oz. can evaporated milk
Prepare the pie shell. Preheat the oven to 425 degrees F (or 400
degrees F for a glass pie pan).
Beat the eggs in a large bowl. Stir in the remaining ingredients in
the order given. Pour the mixture into the pie shell.
Bake for 15 minutes. Reduce the temperature to 350 degrees F (325
degrees F for a glass pie pan) and bake for another 40-50 minutes or
until a knife in the pie center comes out clean. Cool on a wire rack.
This recipe comes to us from Joan Kulka.
**********************************************************************
Meringue Cookies
2 egg whites
1 tsp. GF vanilla
dash salt
1/2 cup sugar
1 6-oz. pkg. Nestle Morsels
Beat the egg whites until foamy. Gradually add the vanilla and salt,
then sugar, beating until egg whites are stiff and shiny. Fold in the
chocolate chips. Drop by the teaspoonful onto a greased cookie sheet.
Bake at 300 degrees F for 30 minutes.
This recipe comes to us from Judy Phelps.
**********************************************************************
** GF flour mix:
6 cups white rice flour
2 cups potato starch (NOT the same as potato flour)
1 cup tapioca starch (also called tapioca flour)
**********************************************************************
Return to the Table of Contents
Tri-County Celiac Sprue Support Group Officials:
------------------------------------------------
Physician Advisor: Thomas Alexander, M.D.
Pediatric Advisor: Robert Truding, M.D.
Dietitian Advisor: Dorothy Vaughan, R.D.
President: Mary Guerriero
Vice President: Sue Gentilia
Past President: Diane Morof
Finance Committee: Tom Sullivan
Secretary: 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 Mary Guerriero.
Return to the Table of Contents