THE SPRUE-NIK PRESS
Published by the Tri-County Celiac Sprue Support Group,
a chapter of CSA/USA, Inc. serving southeastern Michigan
Volume 8, Number 9 November 1999
**********************************************************************
...........................................
: What's Inside :
: ------------- :
: Miscellaneous Notes :
: Preparations for a Hospital Stay :
: Newsletter Roundup :
: Gluten-Free Food Reviews :
: Solving Bread Machine Problems :
: Medical Conditions Associated w/CD :
: Nursing Home Challenge :
: Gluten-Sensitive Enteropathy :
: All About Tofu :
: Gluten-Free Cooking Tips :
: Related Conditions :
: A Hospital Stay :
: Coeliac Disease in Primary Care :
: Digestive Disease Week 1999 :
: Editorial: A National Spokesperson :
: Recipe Page :
: Peanut Butter Cookies :
: Drop Peanut Butter Cookies :
: Russian Tea Cakes :
: Pear Bread :
: Ron's Chewy :
:.........................................:
References
Disclaimer
Miscellaneous Notes:
--------------------
Boost BARS are NOT GF: I received this note from TCCSSG member Diane
Chadwell: "I found an error under the Dining Out section in our
October newsletter. Boost BARS are NOT gluten-free (GF). I called
the company yesterday and they were very emphatic about it. All
flavors and formulas of Boost drinks ARE GF. I just want to save
others some grief and discomfort." Thank you Diane, for correcting
this error.
-=-=- -=-=-
CSA Conference Note: At the CSA Conference in Atlanta on October 1-3,
1999, elections were held for a Region 1 Director to replace Jim Lyles
who had declined to run again due to family responsibilities and time
constraints. Lori Wichman from Appleton, Wisconsin was elected as
Region 1 Director. Tom Sullivan was reelected as Member at Large.
Region 1 includes the states of Illinois, Indiana, Iowa, Michigan,
Minnesota, Ohio, and Wisconsin. More on the conference in next
month's Sprue-nik Press.--Tom Sullivan
-=-=- -=-=-
Cause Of Type-I Diabetes Found<1>: Researchers said they had
confirmed that Type-I Diabetes is triggered by the body's immune
system attacking the pancreatic beta cells that produce insulin for
the body. Finding what it is that causes the body to attack these
cells could help in the development of a cure. More work needs to be
done, but it seems that the immune system's T-cells attack an early
form of insulin as it is produced by the body.
The findings could lead to a type of vaccine against the disease that
affects more than 1 million Americans, said Susan Wong and colleagues
at Yale University School of Medicine. Writing in the journal Nature
Medicine, Wong's team said they found an antigen--a protein that
stimulates an immune response--in mice specially bred to develop what
looks like human juvenile diabetes. "This is the first report to our
knowledge of the identification of an antigen that can stimulate
islet-reactive CD8 T-cells, and it is likely to be a naturally
processed peptide of preproinsulin," they wrote.
In a commentary, Christopher Benoist and Diane Mathis of the Institute
of Genetics and Molecular Cellular Biology in Strasbourg called the
findings "clear and provocative."
-=-=- -=-=-
From Marion MacLeod<2>: A lot of people don't realize what perfect
gravy can be made with rice flour and water. Just shake them up in a
jar and add them to browned fat and salt. I have used rice flour to
make gravy for years now, and so have my non-celiac daughters. The
gravy will not lump up the way it sometimes does with wheat flour, and
tastes much better than gravy made from corn starch.
Chick pea (garbanzo bean) flour can be used in recipes that call for
soy flour, with the same results. This can be handy for those of us
that can not tolerate soy bean products. This tip comes from Going
Against the Grain, by Phyllis Potts.
Return to the Table of Contents
Small Group Discussions
-----------------------
At our September meeting we broke into small groups. In the last
newsletter we included summaries from two of these small group
discussions. Here are some notes from another:
Preparations for a Celiac Hospital Stay, summarized by Marilyn Popp
---------------------------------------
1. Advise all the celiac's physicians of the impending
hospitalization: primary care physician, G.I. doctor, and any
specialists in the hospital who would be involved and/or concerned.
2. Call the hospital dietitian ahead of time regarding arrangements
for the gluten-free (GF) diet.
3. Have someone in the family or a friend contact the hospital to
ensure that a gluten-free diet is being provided. If not, it may
be necessary to bring food into the hospital. (This is
particularly important if the hospitalization is an emergency and
there is no time to make diet arrangements prior to the
hospitalization.)
4. Be sure that the hospital records state that this is a celiac
patient who needs a GF diet.
5. The following papers should be made available to the hospital
medical personnel and the dietitian:
1) explanation of the disease,
2) diet restrictions, and
3) restaurant card.
A good general rule is to have these papers and the doctors' names
and phone numbers on a list which could be taped inside a kitchen
cupboard. Advise family or a friend where it is. (Take this
information with you when traveling in case of an emergency.)
6. In addition, have a few names and phone numbers of celiac support
group members who could be contacted regarding celiac diet
restrictions.
7. Consider bringing your own toaster to the hospital. This would
avoid contamination from the crumbs in a toaster which is used for
regular bread.
Return to the Table of Contents
Newsletter Roundup
-----------------
Compiled by Jim Lyles
This section contains articles and excerpts from newsletters produced
by other celiac groups.
...........................................................
: :
: Excerpts from the Greater Philadelphia CS Support Group :
: ------------------------------------------------------- :
: newsletter: Sep. 1998 Phyllis J. Brogden :
: 6318 Farmar Lane :
: Flourtown, PA 19031 :
:.........................................................:
Caramel Coloring: (Information from Nancy Patin Falini, MA, RD) Nancy
obtained a statement from the Sethness Products Company that their
caramel coloring is gluten-free (GF). The other major producer of
caramel coloring in the United States, D. D. Williamson, also makes
it GF. But the Sethness Products Company also stated that there are
other companies in the USA that do make caramel coloring and some is
also imported from the European Union and Japan. Therefore, the
bottom line on this is that caramel coloring must still be checked
out. If made by the two companies mentioned then you know it is GF
but otherwise, if produced by another company or imported you need to
find out if it is made GF.
-=-=- -=-=-
Gluten-Free Food Reviews
------------------------
Review on Kinnikinnick Foods: Six of us (two celiacs and four
non-celiacs) got together and sampled various products supplied by
Kinnikinnick Foods of Canada The following lists the product, then the
rating, and any comments we felt worth mentioning. We rated each
product on a scale of Excellent, Very Good, Good, and Fair for taste
and texture. They recommend keeping all their baked goods
refrigerated and freezing any products not used after a few days.
When ready to use a frozen product, microwave 10-15 seconds to improve
the texture. Using a toaster oven or a regular toaster is a good way
to improve the flavor and texture of frozen bread and buns. You can
contact Kinnikinnick Foods by phone, 403-424-2900; by fax,
403-421-0456; by e-mail, info@kinnikinnick.com; or at their web page,
http://www.kinnikinnick.com. (Reviews submitted by the Brogden and
Masterson families.)
* Straight Grain Free Bread: Toasted with butter--Excellent taste and
texture; would make a wonderful breakfast toast. Also would be good
for a bacon, lettuce, and tomato sandwich.
* Many Wonder Multi-Grain Rice Bread: Toasted with butter--Fair taste
and chewy texture. A dark bread, hard to toast.
* Robin's Honey Brown Rice Bread: Toasted with butter--Fair taste and
texture.
* Tapioca Rice Bread: Toasted with butter--Very good taste and
texture. Also good for a bacon, lettuce, and tomato sandwich.
* Raisin Tapioca Rice Bread: Toasted with butter--Good taste, chewy
texture.
* Cheese Tapioca Rice Bread: Toasted with butter--Good taste and
texture.
* Tapioca Rice Seed and Fiber Bun: Toasted with butter--Good taste
and fair texture.
* Tapioca Rice Hamburger Bun: Good taste and texture. Phyllis and Ed
made a sandwich right out of the package and enjoyed it.
* Tapioca Rice Bagel: Toasted with butter--Very good taste and
texture. Hard to believe this bagel is gluten-free (GF).
* Cranberry Muffin: Good taste, moist with an airy texture.
* Tapioca Rice English Muffin: Toasted with butter--Very good taste
and texture. Hard to believe this muffin is GF.
* Chocolate Chip Cookies: Good taste with a soft, delicate texture.
Although not good for dunking, these certainly satisfy a sweet
tooth!
* Sugar Donut: Very good taste and texture. More like a cruller than
a donut. Good for dunking--even the non-celiacs liked this one.
Gluten-Free Pantry Mixes, Teresa Masterson: I tested several mixes
from a few different suppliers, ranging from breads to cookie mixes.
The following are the top three I recommend for taste, texture, and
ease of making:
* Gluten-Free Pantry Chocolate Truffle Brownie Mix: All you need to
add to this mix is 4 large eggs, 1-1/2 sticks unsalted butter, and
3/4 cup coarsely chopped nuts (optional). Mix all ingredients
together, put in a 9 x 13 inch pan, and bake for 33 minutes at 350
degrees F. These brownies rise very high and the taste and texture
are excellent. I served this to non-celiacs and they wanted to know
where they could purchase this mix. If you are a chocoholic you
will love these brownies!
* Gluten-Free Pantry Chocolate Chip Cookie/Square Mix: This mix can
make cookies, squares, or cake. I made the squares so in addition
to the mix I used 1/2 cup butter, 1/2 cup vegetable shortening, 2
tsp. vanilla, and 4 eggs. Mix all ingredients together and spread
in a 9 x 9 inch pan. Bake for 30 minutes at 350 degrees F. These
are very easy to make and they rise very high. They had a good
texture and taste, and were just as good the next day.
* Gluten-Free Pantry Favorite Sandwich Bread Mix: I purchased this
mix in bulk--a 5 lb. bag. I made this in the Zojirushi V-20 bread
machine. I added 4-1/2 cups bread mix, 1-3/4 cups water, 4 Tbsp.
butter, 2 large eggs, and 2-1/4 tsp. yeast. The total time was 2
hours and 18 minutes. This bread bakes nice and high and has a
great texture--perfect for sandwiches. Slice it when it is
completely cool and freeze the slices individually in Ziploc bags.
The package also tells how to make this bread in the oven.
From the Food Chain (Gang): Four members (Christina Buschmann,
Barbara Janderisevitz, Teresa Masterson, and Ann Marie Muto) set out
with the goal of preparing, evaluating, and objectively rating
gluten-free (GF) mixes. They rated each mix in five different
categories (easy to make, taste, texture, serves well, and
aftertaste), using a scale of 1 to 5 with 5 being most favorable.
* Miss Roben's Reformulated Chocolate Chip Cookie Mix: Ratings:
4-5-5-5-5. Comments: Everything you need including the chips are
in the mix. I added 1/3 cup of Bette Hagman's GF flour mix to the
dough because it seemed too wet for cookies.
* Miss Roben's Roll and Cut Gingerbread Cookie Mix: Ratings:
4-5-5-5-5. Comments: I used my cookie press and made bar cookies.
This is not a ginger snap, it is excellent gingerbread. The recipe
calls for whole milk and molasses so be sure to have them on hand
before you start. This mixture also seemed a little too wet, but
that allows you to add GF flour while rolling and cutting.
* Really Great Foods Company Lemon Poppy Cake Mix: Ratings:
5-5-5-5-5. Comments: This mix makes a beautiful, light, moist,
tasty cake. It makes two 9-inch layers. Teresa made a 2-layer cake
with lemon icing that was heavenly. This cake can stand on its own
as a loaf, too. Lemon icing: 6 Tbsp. creamed butter, 1/4 cup
lemon juice, 1-1/2 tsp. vanilla, and 4-1/2 to 4-3/4 cups sifted
confectioners sugar. For butter icing, substitute 1/4 cup milk for
the lemon juice.
* Gluten-Free Pantry Country French Bread and Pizza Mix: Ratings:
5-5-5-5-5. I followed the package instructions to the letter. It
produces a beautiful 2-lb. loaf. The bread had a delicious chewy
crust and white firm bread that is excellent plain or toasted.
-=-=- -=-=-
Solving Bread Machine Problems, by Teresa Masterson
------------------------------
* Many bread machines can be programmed to eliminate unwanted cycles.
Gluten-free (GF) breads only require one kneading and one rising.
The loaf has a lighter and airier texture when extra kneading/rising
cycles are eliminated.
* Look for a machine with a strong paddle to thoroughly mix all
ingredients.
* Do not use the recipes that come with your machine unless they are
specifically designed for making GF bread.
* Combine all liquid ingredients and stir lightly with a fork before
placing them in the bread pan. Do likewise with the dry
ingredients. Add the ingredients in the order recommended by the
bread machine manufacturer.
* Have all liquid ingredients at room temperature. Though most bread
machines have a preheat cycle, I have better results when using warm
water (100-110 degrees F) and room temperature eggs.
* Use Active Dry yeast, not Rapid Rise yeast unless the recipe
specifically states otherwise. Also, only use fresh yeast.
* Storing xanthan gum in the freezer keeps it fresher.
* Use large eggs unless the recipe specifically states otherwise.
* Remove the bread from the pan immediately to keep the crust from
getting too dark. Let it cool on a wire rack before slicing.
* I slice the entire loaf and put each slice in individual small
freezer bags. These can be placed in a larger freezer container and
placed in the freezer. This makes it easy to pull the slices apart
when frozen.
* If your bread machine is also being used to bake breads which
contain gluten, make sure all parts (paddle, rubber ring, pan, etc.)
are thoroughly cleaned after each use.
-=-=- -=-=-
Medical Conditions Associated With Celiac Disease, Nancy Patin Falini,
------------------------------------------------- MA, RD
What effects does active Celiac Disease (CD) have on the body as a
whole? Undiagnosed, untreated, or poorly treated CD can do more than
run havoc on the small intestinal mucosa/lining. Living gluten free
(GF) can rejuvenate the small intestine and lessen the severity of
related conditions or completely resolve them.
Those with CD are at higher risk for abnormalities of bone and mineral
metabolism. In fact, the celiac population is considered to be the
highest risk group for developing osteoporosis (porous bones).
Osteopenia (thin bones), osteomalacia (soft bones), rickets (bowing of
the legs--usually seen in Asian CD or very severe cases) and just bone
pain can be caused by active CD. Bone deformities, multiple
fractures, hair line fractures and short stature can result. Bone
mineral deficiency or bone problems are less likely to occur in early
diagnosed CD. Bone disease is more prominent in latent CD and in
those noncompliant to the GF meal plan. How is bone health affected
by living GF? Treated celiac adults have been seen to have bone
mineral density greater than untreated celiacs, but less than that of
non-celiac adults. GF living can actually significantly increase bone
mineral density without the use of medication. When CD is diagnosed
during childhood and the child is compliant to the meal plan their ann
ual increase of bone mineral density is greater than that of
non-celiac children. And in adulthood their bone mineral density is
similar to that of non-celiac adults.
Type 1 Diabetes and CD are both autoimmune diseases. [CD occurs in
approximately 6% of Type 1 Diabetics.--Dr. Alexander] Therefore, it
is wise for all those with Type 1 Diabetes to be screened for CD.
Clues suggesting CD in Type 1 Diabetes may include any of the
following:
1) Failure to thrive in children.
2) A delay in height and weight in children and adolescents.
3) Steatorrhea (fat malabsorption).
4) "Brittle" diabetes or labile blood sugar.
The management of diabetes through GF living can improve. Diabetic
celiacs must keep on hand plenty of GF carbohydrates for sick days and
the control of low blood sugar.
Anemia usually due to iron deficiency is frequently seen in
undiagnosed, untreated CD while low folate levels tend to occur
simultaneously. Anemia due to CD is often unresponsive to iron
supplementation. A history of childhood anemia may suggest CD.
Anemia caused by active CD can respond to the GF meal plan but often
iron supplementation is taken after diagnosis to replenish iron stores
more rapidly. Supplementing the diet with folic acid (the
supplemental form of folate/folacin) may be beneficial to hasten
repletion.
Pancreatic insufficiency can occur in undiagnosed, untreated CD and is
usually accompanied by diarrhea. Celiac intestinal damage altering
digestive hormone function, as well as prolonged malnutrition, can
contribute to the cause of pancreatic insufficiency. Pancreatic
insufficiency usually resolves by gluten withdrawal alone and
improvement in the intestinal mucosa/lining. However, it can be the
cause of poor response to the GF meal plan, thereby warranting the
need to analyze pancreatic function and take oral pancreatic enzymes
as necessary. Additionally, fat soluble vitamins in a water
miscible/soluble base should be taken, while dietary fat modification,
possibly requiring medium chain triglycerides may be required. Then
after continuous gluten abstinence and intestinal healing the
pancreatic insufficiency should resolve with no further need for the
above described therapy.
Active CD can result in liver dysfunction which can be reversible.
Abnormal liver function tests can be seen upon diagnosis and are
sometimes the only abnormal biochemical marker. Consequently, this
can actually be an early indicator of CD. In most cases abnormal
liver biochemical markers resolve spontaneously 1 to 12 months after
beginning the GF meal plan.
Return to the Table of Contents
........................................................
: :
: Excerpts from the Healthy Villi Celiac Support Group :
: ---------------------------------------------------- :
: newsletter: Spring 1999 Melinda Dennis, editor :
: newsletter: Summer 1999 95 Orchard St., #2 :
: Somerville, MA 02144 :
:......................................................:
The Nursing Home Challenge, by Marjorie W. Rogers, R.N.
--------------------------
[Editor's Note: There are two aspects of this article that I found
particularly important: 1) A celiac diagnosed over 30 years ago still
managed to live to be 88 years old, and 2) A positive, strong rapport
with caregivers is established to help an aging celiac maintain a good
quality of life.]
A few of our members have voiced concerns about the care of someone on
the gluten free diet in the nursing home setting. This article is
dedicated to my mother, Olive S. Wilkins (1905-l993), a celiac with
lactose intolerance from 1958 to 1993.
My mother was diagnosed a celiac in 1958 and developed lactose
intolerance later in life. After a hospitalization in September 1989,
it became necessary to find her a nursing home placement. As her
advocate, I visited five nursing homes. She was refused admission to
two of them because the staff believed they could not monitor a
gluten-free (GF) diet. Perhaps I could have chosen to protest this
refusal, as all nursing homes must have registered dietitians on their
staffs. However, I believed it would be more beneficial for my
mother's care to choose one that was receptive to dealing with the GF
diet.
I learned that the registered dietitian (RD) is often only on the
premises 2-3 days a week. He/she sets up the dietary plan with the
proper nutrition requirements. Fortunately the RD was receptive to my
suggestions and tailored the necessary nutritional needs to my
mother's individual tastes and dietary requirements. The majority of
the day by day dietary care fell on the staff and manager of the
kitchen, the dining room monitor and the dietary aides. The manager
of the kitchen went through the storeroom and checked all the labels.
She conferred with me about the two-week menu plan and any
questionable ingredients. As dinner was served at the noon meal, the
evening meal became the most difficult to manage. Often mother's only
choice would be a GF sandwich. We agreed that I would supply the GF
bread and they would store it in their freezer. In checking out their
mayonnaise, it became necessary for me to supply large jars of a GF
brand. They allowed me to bring in GF muffins, cakes and cookies in
seale d containers. These were stored in the freezer and were served
on her tray with the appropriate meal. We kept GF cookies, rice
cakes, GF peanut butter, GF brown rice cereal and her favorite GF
candy in sealed tins in her room. This way she could supplement her
meals and have something for the afternoon socials. I also provided
bananas, as the kitchen's supply often ran out by the end of the week.
As you will note, this required much time and effort as well as many
compromises along the way. Eventually, a cost analysis of mother's
dietary intake was done and the manager began to order the bread
directly from the supplier.
When Mother was first admitted, she ate in the dining room and was
able to monitor her own meals. As time passed, she became less able
to do this and started to eat in her room. At this time we had to
begin depending on the dietary staff to monitor her meals.
Thankfully, a foundation of education and trust had been laid. Even
though there was still an occasional error at my mother's expense, the
staff remained open to my perusal of the menu and receptive to
suggestions concerning what needed to be substituted or eliminated.
Another area of concern was with her medications. After having the
physician specifically order GF and lactose-free medications, I spent
some time with the charge nurse voicing the need for Mother to have
her own supply of certain medications and to not use the generic
supply. Gradually, all shifts realized the importance of these
choices.
I cannot emphasize enough the necessity of establishing a good rapport
with the staff at all levels of the client's care. Take advantage of
the client's rights and have your family or advocate attend the
Patient Care Plan Meetings that a nursing home is required to hold on
a quarterly basis. This is the place to voice concerns and have them
implemented into the plan of care. Find a means for you, your family,
or an advocate to become involved in the nursing home routine. Attend
the family and resident meetings. Make your presence seen and your
voice heard. Volunteer! I served as a wait person at the spring and
fall dinner dances, helped shelve library books, sang hymns at the
worship services, and served refreshments at the afternoon socials.
These activities can coincide with the days of your visits. All of
the above will promote increased awareness and will strengthen the
bond of trust and mutual respect with the staff at all levels of
nursing home care.
My recommendation is to begin to train an advocate before your aging
process becomes critical. Familiarize yourself, your family, and your
advocate with the resources that are available (see below). As a
team, develop an assertive attitude. Balance a blend of constant
commitment to quality care with the necessary compromises to integrate
the GF diet into the desired standard of care. Educate yourself, your
family members, your advocate, and the nursing home personnel. A
well-informed family, client, and/or advocate with a commitment to
caring can ensure optimal care for the nursing home resident.
No nursing home should refuse to address the needs of a celiac
resident. The federal Nursing Home Reform Law requires that a nursing
home provide care to maintain the highest possible level of
functioning of residents and must make reasonable accommodation to the
needs of its residents. State public health and consumer protection
laws also protect the rights of nursing home residents.
Assistance is available for help in resolving nursing home problems:
The National Citizens' Coalition for Nursing Home Reform
(1-202-797-0657), a national advocacy organization, is an excellent
source of information on nursing home issues and has published Nursing
Homes, Getting Good Care There by Sarah Greene Burger, Virginia
Fraser, Sara Hunt, and Barbara Frank. This book is an invaluable
resource for families, friends, and caregivers of nursing home
residents.
Thank you to Liane Zeitz, Esq. for her valuable contribution of
resources.
-=-=- -=-=-
Gluten-Sensitive Enteropathy, by Melinda Dennis
----------------------------
Wouldn't it be a relief to know that the next time a celiac walked
into a nutrition office, she/he would be greeted with a dietitian who
was following a standard of guidelines for the disease? Well,
guidelines for gluten-sensitive enteropathy (GSE) are now available as
of March ' 99. According to Janet Gilbreath, Manager of Quality
Management Research for the ADA, dietitians can choose to implement
these guidelines in their practice; the ADA anticipates seeing them
applied widely throughout Massachusetts.
Medical Nutrition Therapy (MNT) protocols are a set of detailed
guidelines specific to a particular disease. In 1995, the Quality
Management Committee of the American Dietetic Association (ADA), after
reviewing more than 20 versions, created a standardized manual to
guide dietitians through the nutritional care specific to individual
conditions.
The MNT protocols are published in the Medical Nutrition Therapy
Across the Continuum of Care. In addition to setting a framework for
standardized treatment, the manual also defines quality and
effectiveness of care and outlines the potential health outcomes with
use of the protocol. Naturally, individual disease cases vary. While
the MNTs serve as a general framework for treating a disease, the
judgment of the dietitian still holds as the determining factor for
each patient's case.
Recently, Blue Cross and Blue Shield of Massachusetts requested that a
protocol for gluten-sensitive enteropathy be written as a guide for
reimbursement. Published too late to make the second edition of the
Medical Nutrition Therapy Across the Continuum Care in October 1998,
it appears in full text in the March 1999 Journal of the American
Dietetic Association (pp. 352-62). The next edition of the manual,
scheduled for publishing in late 2000, will contain the GSE protocol.
The GSE protocol has been designed for an ambulatory care setting for
adults 18+ years old. It recommends a series of 4 sessions with a
licensed dietitian and a follow-up appointment 3- 6 months after the
final session. The Outcome Assessment Factors, or stated simply, the
key areas to be covered, include lab readings, anthropometric readings
(height, ideal body weight), quality of life readings, and behavioral
and cognitive changes. The protocol specifies acceptable lab scores
and sets goals for the patient's understanding of and adherence to the
gluten-free lifestyle.
Session I begins by obtaining clinical data to assess the patient's
level of severity, including lab values, medical history, biopsy
results, absorption test results, clinical signs and symptoms,
medications and measurements of the patient's quality of life, using a
sense of well being or pain scale evaluation. Next, the patient is
interviewed to gather information on anthropometrics, GI symptoms,
nutrition history, use of medications, psychosocial and economic
issues and willingness/readiness to learn the gluten-free diet.
Next, the patient is trained for the self-management of the disease.
The dietitian reviews the key facts about celiac disease and the
nutrition prescription, including identifying sources of gluten,
reading food labels, modifying recipes, investigating vitamin/mineral
supplementation, planning gluten-free meals, etc. Self-management
training also includes educational information on nutrition and
resources for gluten-free foods.
Finally, goals and expected outcomes are set for the next scheduled
session. The necessary lab tests are also outlined in order of their
occurrence. Progress Notes maintain a record of visits, tests and
clinical and behavioral outcomes. It's almost like having a coach to
cheer you on!
What a reassurance to know that we can be treated and monitored in a
consistent, organized manner. With this kind of standardized clinical
information of GSE readily available to the nutrition community, the
likelihood increases that newly diagnosed celiacs will adjust more
rapidly to the gluten-free lifestyle.
E-mail jgilbreath@eatright.org for an electronic version of this
protocol.
Return to the Table of Contents
.................................................................
: :
: Excerpts from _Derby City Celiac_ :
: --------------------------------- :
: Winter 1998-9 Bill Banks, editor :
: Greater Louisville Celiac Sprue Support Group :
: PO Box 7194 :
: Louisville, KY 40257-0194 :
:...............................................................:
All About Tofu
--------------
Tofu is made by curding the mild white milk of the soybean. Tofu is
high in protein and relatively low in calories, fats, and
carbohydrates. It is one of the most versatile protein foods in the
world, and contains no cholesterol. According to the USDA, 1/2 cup of
tofu has about 150 mg. of calcium, about the same as 1/2 cup of milk.
Tofu is a complete vegetable protein that is easy to digest, making it
ideal for children and the elderly. For babies, tofu can be blended
in the blender or food processor with whatever fruit, vegetable, or
flavoring the child likes. It takes on the flavor of other
ingredients, making it adaptable to a variety of main dishes,
desserts, soups, salads, salad dressings, and dips.
Tofu comes in many forms: silken (the softest), medium soft (Japanese
style), medium firm (Chinese style), and hard-pressed (a very dense
and firm cheese). The firmer types of tofu are best for slicing and
cubing. Softer types are best for blending, mashing, and crumbling.
Tofu is best when it is fresh. Fresh tofu has a fresh and delicate
scent, hardly any smell at all. It can be kept for up to one week in
the refrigerator, submerged in cold water. The water should be
changed daily to keep it fresh and moist. If the tofu smells a little
sour, it is still usable; but you should boil it for 20 minutes. This
will change the texture, making it harder and chewier.
Freezing tofu drastically changes its properties, adding even more
variety to an already versatile food. To freeze it, just drain it,
wrap it in foil or plastic, and put it in the freezer. After you thaw
it and squeeze out the water, the tofu resembles a spongy latticework
which has a more meaty, chewy consistency than regular tofu. In this
form it more readily soaks up marinades and sauces.
Some ideas for introducing tofu to your family:
-- Add chunks of firm tofu to soups and stews.
-- Mix crumbled tofu into a meatloaf.
-- Mash tofu with cottage cheese and seasonings to make a sandwich
spread.
-- Create tofu burgers with mashed tofu, bread crumbs, chopped
onions, and seasonings.
-- Marinate tofu in barbecue sauce [GF, of course--ed.], char it on
the grill, and serve on crusty GF bread.
-- Add taco seasoning to pan-fried, crumbled tofu or a mixture of
tofu and ground beef.
-- Blend dried onion soup mix into soft or silken tofu for a
cholesterol-free onion dip.
-- Stir silken tofu into sour cream for a reduced-fat baked potato
topper.
-- Blend tofu with melted chocolate chips and a little sweetener for
chocolate cream pies.
-- Replace all or part of the cream in creamed soups with silken
tofu.
-- Make missing egg salad with tofu chunks, diced celery,
mayonnaise, and a little mustard.
-- In recipes, replace part of the mayonnaise, sour cream, cream
cheese, or ricotta with silken tofu.
-- Use tofu in dips and creamy salad dressings.
Return to the Table of Contents
..........................................................
: :
: Excerpts from the Nashville Celiac Sprue Support Group :
: ------------------------------------------------------ :
: newsletter: Oct. 1998 Tori Ross, editor :
: 701 Heather Spring :
: Brentwood, TN 37027-4424 :
:........................................................:
Dietary Tips:
* Wendy's Salad Dressing: Did you know that you could buy individual
packets of Hidden Valley's Ranch dressings from Wendy's? These GF
dressing packets are good for traveling and for taking into
restaurants as they will fit in your pocket.
* You Can Make Your Own Thousand Island Dressing by mixing Hellmann's
mayonnaise, Heinz ketchup, and a little bit of diced GF pickle.
* BLT: Try Louis Rich turkey bacon, cooked one minute per strip in
the microwave, for a great BLT on Ener-G's English muffins.
Return to the Table of Contents
......................................................
: :
: Excerpts from the Washington Area CS Support Group :
: -------------------------------------------------- :
: newsletter: Mar. 1999 Becky Campbell, editor :
: 1332 R Street, NW :
: Washington, DC 20009 :
:....................................................:
Annie's Naturals has come out with a pourable Vermont Cheddar Cheese
Cooking Sauce that is gluten-free (GF). The sauce is perfect for
topping a broccoli-filled baked potato. Look for it at your local
health food store, or contact the company at Foster Hill Rd., North
Calais, VT 05650, 800-434-1234. The company publishes a list of all
their GF, dairy-free, and vegan products.
Return to the Table of Contents
...............................................................
: :
: Excerpts from the Houston Celiac-Sprue Support Group :
: ---------------------------------------------------- :
: newsletter: Mar/.Apr. 1999 Janet Y. Rinehart, President :
: 11011 Chevy Chase :
: Houston, TX 77042-2606 :
:.............................................................:
Gluten-Free Cooking Tips
------------------------
* All of these can be used as dough enhancers:
1 pinch ascorbic acid
1 tsp. cider vinegar
1-3 tsp. unflavored gelatin
1/4 tsp. lecithin granules.
* The dough may be too wet if...
It never rises
The bread collapses as it cools
The dough is very tacky, hard to handle
The bread is gummy inside
The center of the bread stays raw
* The dough may be too dry if...
It is very crumbly; not smooth
It won't blend thoroughly
The bread falls apart when cut or handled
The bread tastes dry
The bread crust looks rocky (when made in a bread machine)
* For milk and milk replacements, the amount of water varies. In 100
grams of each of the following, here are the number of grams of
water:
Whole 3.3% milk 87.99 grams of water
2% milk 88.86 grams of water
Skim milk 90.38 grams of water
Goat's milk 87.03 grams of water
Coconut milk 72.88 grams of water
Soy milk 93.27 grams of water
* When using various sweeteners, you must adjust for the amount of
water they contain. Here is the amount of water in 100 grams of
each of the following sweeteners:
Granulated sugar 0.0 grams of water
Apple juice 87.9 grams of water
Corn syrup 22.8 grams of water
Maple syrup 32.0 grams of water
Molasses 25.9 grams of water
Maple sugar 8.0 grams of water
Return to the Table of Contents
......................................................................
: :
: Excerpts from the Westchester CS Support Group :
: ---------------------------------------------- :
: newsletter: Apr. 1999 Leslie Elsner and Sue Goldstein, editors :
: 9 Salem Place :
: White Plains, NY 10605 :
:....................................................................:
Ultimate Biscotti: Ultimate Baking was specializing in gourmet
biscotti made with organically grown wheat four years before
co-founder Bob McCarthy learned he could not eat gluten. They now
also bake five delicious varieties of gluten-free biscotti: hazelnut,
chocolate dipped hazelnut, crystallized ginger, almond anise, and
peanut butter chocolate chip.
"We are very excited about our new line of wheat- and gluten-free (GF)
Ultimate Biscotti", state the owners. "It was developed and perfected
to satisfy the growing number of people who do not eat wheat products.
Our wheat-free biscotti is every bit as good as our organic wheat
biscotti...and that's very good!" Being fully aware of the dangers of
any cross-contamination of ingredients, the company reports that they
adhere to the most stringent manufacturing and cleanliness guidelines.
"Wheat-free products are produced at the beginning of the week before
any wheat products are produced. The equipment that might come in
contact with both product lines is meticulously cleaned between
operations. All of our ingredients have been fully researched and
verified to be GF. After all; Bob loves his biscotti, and very much
loves his good health!"
Ultimate Biscotti can be ordered by calling 800-341-7045, or by
shopping online at http://www.ultimatebiscotti.com.
Return to the Table of Contents
...........................................................
: :
: Excerpts from _Gluten-Free News_ (Michigan) :
: ------------------------------------------- :
: Mar. 1999 Michigan Capitol Celiac/DH Support Group :
: May 1999 PO Box 1482 :
: East Lansing, MI 48826 :
:.........................................................:
A New Thickener: Rose Wallace says she has found Kudzu to be a great
thickener. It is gluten-free, as it comes from a weed that grows in
the south. She says it does not become lumpy like cornstarch and is
not as gooey as potato starch or tapioca. She says it is easy to mix
and absorbs flavors quickly. It can be used for gravies and sauces
for vegetables. It should be available at health food stores or
through co-ops, though you may have to special order it.
-=-=- -=-=-
Related Conditions, Dr. Carol Beals
------------------
Fibromyalgia: Symptoms have been around since 1800, but the actual
diagnosis was not established until 1992 by the World Health
Organization. In 1990 the College of Rheumatology listed specific
criteria including the specific points of pain. Fibromyalgia is four
times as painful as rheumatoid arthritis. It is caused by a lack of a
neuro-chemical called serotonin. It has been found that the spinal
fluid of a person suffering from fibromyalgia has a decreased
serotonin level and an increase in substance P, the chemical the cell
releases that goes to the brain to stimulate pain receptors.
Currently we have no way of decreasing substance P but we can increase
serotonin by using medications that do not allow serotonin to be
broken down. Besides pain in muscles, persons with fibromyalgia have
a sleep disturbance. They do not have the fourth stage of sleep, the
stage just before dreaming. It is in the fourth stage of sleep that
the hormone which helps repair our bodies is released. Because of
this the pers on wakes up feeling tired and aching. Fortunately most
of the above-mentioned medications also help persons to sleep. Other
problems with fibromyalgia are: bladder problems including
incontinence, palpitations, dizziness, and GI disturbances including
diarrhea and irritable bowel syndrome. Besides medication Dr. Beals
recommends some vitamin supplementation. She recommends no
Nutrasweet, little coffee, little yeast, and very little red meat.
She also recommends stretching exercises to release tight muscles.
Sjogrens Disease is an autoimmune disease with the most common
symptoms of dry eyes, dry mouth, and arthritic pain. Some persons
have parotid [gland] enlargement and it can be systemic in which a
person does not feel well. It usually comes about six months after
some critical event in a person's life. It can be primary with no
other diseases, or it can be secondary with some other autoimmune
disease. There are blood tests which can distinguish Sjogren's from
Lupus. One of the problems with dry mouth is that one is more subject
to dental problems. One must have good brushing. For dry eyes, one
must use tear drops with no preservatives as the preservatives can
damage the cornea over time. One can use Solagen or Pilocarpine in
the pill form. If one has many symptoms of Sjogren's one can take
Plaquenil.
Osteoporosis: Dr. Beal advises all celiacs, including men, to have a
bone density test. Besides taking calcium daily with Vitamin D and
exercise, there are three medications currently for treating
osteoporosis: Fosamax, Miacalcin, and Evista. Dr. Beal noted that
the use of steroids, caffeine, and alcohol decreases the amount of
calcium in the bone.
Return to the Table of Contents
..............................................
: :
: Excerpts from _Alamo Celiac_ :
: ---------------------------- :
: June 1999 Lynn Rainwater, editor :
: July 1999 San Antonio CS Support Group :
: Sep. 1999 1023 Cloverbrook :
: San Antonio, TX 78245-1604 :
:............................................:
A Hospital Stay
---------------
There's nothing like a hospital stay to grab a celiac's attention. It
did get mine, anyway. You're a captive audience when it comes to the
food tray they deliver to your room three times a day. Whether you're
on clear liquids, as I was when I was admitted to an Austin hospital
last month, or solid foods, the mental warning signs go up.
I had read about talking to a dietitian on staff about your dietary
needs, if ever the occasion of hospitalization came up. Seemed easy
enough. Tell them you are a celiac patient and all your meals will be
gluten-free.
Well, I'm joining the ranks (and there's plenty of horror stories out
there) of those who will never take the "safety" of a hospital
environment for granted.
Clear broth was derived from a packet of instant hidden gluten
ingredients. Thankfully, although I was hooked up to an IV, I was
conscious and able to quiz the nurses on what was in the broth,
juices, and gelatin. Celiac Disease was something none of them had
heard of. I had to become the teacher.
I'm very blessed to have a husband who could go out to Whole Foods and
buy gluten-free chicken broth and juices for me. It saved me from
getting even sicker on the liquids I would have been served. The food
(solid) would have been a much bigger challenge.
This, as I mentioned before, is not an isolated case. After my own
personal experience, I talked to many others who had dealt with the
same issue.
All of the hospital "veterans" advised the same thing: be prepared.
Stock up on canned gluten-free broths. Have a stash of gluten-free
crackers and breads on hand. And most important: Advise your family
or close friends that their help will be needed in bringing in food
that you can consume.
When you get sick or require surgery, the last thing you need to be
concerned about is food. Just as you would prepare for an emergency
in a fire drill, look ahead and have a game plan.
Prior to my time as a patient recently, I had stuck my head in the
sand, so to speak, and hoped I would never have to deal with this.
Now I've had my wakeup call, realizing that life happens while you're
making tidy little plans.
I did well during my hospitalization, thanks to family, and I'm
getting my survival kit ready just in case I need it again. [This
article was not signed.--ed.]
-=-=- -=-=-
Coeliac Disease in Primary Care
-------------------------------
This is a case finding study by Harold Hin, general practitioner;
Graham Bird; Peter Fisher, consultant physician; Nick Mahy, consultant
histopathologist; Derek Jewell, consultant gastroenterologist; British
Medical Journal, vol. 318, Jan. 16, 1999. Reviewed by Lynn
Rainwater.
The objectives of this study were to provide evidence of
underdiagnosis of Celiac Disease (CD) and to describe the main
presenting symptoms of CD in primary care. Nine practices in and
around the English market town of Banbury, serving a population of
70,000, participated.
The project is described as a "case finding study." This means
participants were selected based on what were thought most likely to
be the modes of presentation at a general practice. These were:
Irritable bowel syndrome
Anemia
Family history of CD
Infertility
Malabsorption symptoms or diarrhea
Weight loss
Fatigue or "tired all the time"
Short stature
Thyroid disease
Failure to thrive
Diabetes
Epilepsy
Arthralgia (joint pain)
Eczema
During October 1996 to October 1997, the first 1,000 patients who met
any of the above criteria received endomysial antibody tests. This
included 271 male patients and 729 female patients. Of these, 30 had
positive results. These 8 male and 22 female patients were then
biopsied--all of them were found to have CD.
Symptoms: What were their symptoms? Most patients (25 out of 30)
presented with non-gastrointestinal symptoms. The doctors working on
the study felt, "Our most important finding is the presence of anemia:
of patients who had this presentation, 11% of the female patients
tested and 23% of male patients tested had coeliac disease. We
recommend that the endomysial antibody should be one of the first line
investigations for unexplained anemia in the community."
Also, they point out that "tired all the time" was among the main
presenting symptoms. Several of these patients had been labeled with
chronic fatigue syndrome. The presenting symptoms by frequency of
incidence were:
# Patients Symptoms
---------- --------
15 Anemia
9 "Tired all the time"
6 Family history
4 Malabsorption
3 Anemia (past)
2 Thyroid
2 Weight loss
1 Diarrhea
1 Failure to thrive
1 Liver function test results raised
1 Odd neurology
1 Unexplained macrocytosis
Note: Some patients presented with one symptom, others with more. In
addition to the 18 patients with anemia or past anemia, three more had
an incidental finding of anemia.
Did you notice that none of these undiagnosed celiacs had irritable
bowel symptoms? Of the 1,000 patients who had received the antibody
test, 132 had irritable bowel symptoms, but none of these had CD,
"...suggesting that coeliac disease rarely masquerades as the
irritable bowel syndrome in general practice, although such a
presentation is not unknown."
Comments: In the year before this study, seven cases of CD had been
diagnosed in the Banbury area. The study found 30 celiacs: "...the
resulting fourfold increase in incidence was solely due to active case
finding during the study year." There is a message here for American
doctors: "Look and ye shall find." We would all agree that a major
reason many American celiacs have gone for years without a diagnosis
or with a wrong diagnosis is because our general practitioners and,
yes, even many gastroenterologists, if they even think of CD, consider
it "rare" and fail to test for it.
The doctors point out that delayed diagnosis results in complications
such as osteoporosis, infertility, and malignancy. Although they
recognize that the costs of antibody tests and biopsies are high, they
feel that "...these expenses are justified, given that coeliac disease
is not only a treatable disease but also has serious preventable long
term complications."
Who paid for this well-designed and successful study? Costs for the
endomysial antibody tests and for Dr. Harold Hin to spend one session
per week for one year to coordinate the study were met by Nutricia
Dietary Care, a maker of gluten-free diet foods.
In the absence of a corporate sponsor with deep pockets, we must fund
our own U.S. incidence study.
-=-=- -=-=-
New Bette Hagman Book: Bette Hagman's latest cookbook, The
Gluten-Free Gourmet Bakes Bread, has just been released. This
hardcover book contains 200 recipes. According to the publisher, it
is "...a breakthrough bread book for the nearly million celiacs and
millions more with wheat allergies." The list price is $27.50. The
best price we've found is $17.87 plus shipping at Buy.com (on the
internet at http://www.buy.com). The big internet book dealers
(Barnes and Noble, Amazon.com, and Borders) have it at $19.25 plus
shipping.
Return to the Table of Contents
.........................................
: :
: Excerpts from _Lifeline_ :
: ------------------------ :
: Summer 1999 Leon Rottmann, editor :
: CSA/USA, Inc. :
: PO Box 31700 :
: Omaha, NE 68131-0700 :
:.......................................:
Sensitivity of Antibodies in Diagnosing Celiac Disease<3>: 101 cases
were studied, including 69 untreated celiacs and 16 first-degree
relatives. Antiendomysium antibodies (EmA) and antigliadin antibodies
(AgA) were compared with the degree of villous atrophy in biopsy
samples from the subjects.
The positive predictive value of EmA for Celiac Disease (CD) was
excellent because all EmA-positive patients were diagnosed with CD.
However with partial villous atrophy only 9 of 29 (31%) had positive
EmA. None of the 16 first-degree relatives had positive EmAs.
AgA were detected in 39 of 69 patients (62%). A combination of EmA
and AgA showed a sensitivity of 76%.
It was concluded that although EmA sensitivity in total villous
atrophy is excellent, in partial villous atrophy the sensitivity
appears to be disappointing. EmA and AgA have only limited value in
screening programs for CD.
Return to the Table of Contents
................................................
: :
: Excerpts from _CDF Newsletter_ :
: ------------------------------ :
: Summer 1999 Elaine Monarch, publisher :
: Celiac Disease Foundation :
: 13251 Ventura Blvd., Suite 1 :
: Studio City, CA 91604-1838 :
:..............................................:
Digestive Disease Week 1999, by Elaine Monarch and Elizabeth Purko
--------------------------- [condensed somewhat--Jim Lyles]
What a great meeting for celiac disease! Digestive Disease Week is
the largest international meeting of gastroenterologists and related
specialists, meeting every May, in the United States. More
information was shared on Celiac Disease (CD) this year than ever
before. We were very fortunate to have one of our esteemed medical
advisors, Peter Green, M.D., on the review committee.
Over forty abstracts were published on a broad range of celiac-related
topics. There were two invited lectures on CD, by Drs. Martin
Kagnoff and Peter Green. Additional research forums on CD were
chaired by Drs. Joseph Murray, Carol Semrad, Alessio Fasano, and
Green.
One thing we found very disturbing was the attitude and opinions
expressed by some of the doctors. They seem to feel that delivering
the diagnosis of CD to their patient was a terrible thing. These
doctors also boldly stated that "all of their patients cheat" because
the diet is "so restrictive" no one can maintain it. They set their
patients up for failure before they even leave the office. Quoting
Joseph Murray, M.D., in the American Journal of Clinical Nutrition,
vol. 69, March 1999: "A positive, optimistic attitude on the part of
the physician is crucial to the future success of the patient.
Cheating on the diet should be actively discouraged. An active
interest on the part of the clinician can improve compliance as can
patient knowledge that follow-up blood tests can detect gross gluten
ingestion." Each celiac can do their part when they let their doctors
know that we're happy to feel so good by just changing our diet.
What follows is a sampling of the abstracts presented at the meeting:
* "Long Term Follow-up of Patients Diagnosed with Celiac Disease in
Early Childhood", Peter Wieneke, Claire O'Leary, et al, NUI, Cork,
Ireland. Conclusions: (1) Most patients diagnosed with CD in
childhood do not attend any medical or dietary service for long term
supervision in adulthood. (2) Most of these patients are not
adhering to a gluten-free diet (GFD). (3) Symptoms, not the fear of
long-term complications, are the primary motivating factor guiding
dietary compliance in adulthood. (4) Outcome including risk of
malignancy, osteoporosis; and more subtle sequelae of long-term
malabsorption in patients with long-standing CD who are not adhering
to a GFD.
* "Gastrointestinal Symptoms in Celiac Disease", Joseph A. Murray,
The Mayo Clinic, Rochester, MN; and Tureka Watson, Jiro Rufo,
University of Iowa, Iowa City, IA. Conclusion: A wide spectrum of
gastrointestinal symptoms is associated with CD in adults and most
respond to a GFD. There is much overlap with symptoms of Irritable
Bowel Syndrome (IBS). Only one half of the patients studied had
diarrhea prior to diagnosis and even less had symptoms suggestive of
steatorrhea. Constipation is a frequent symptom in untreated CD.
Clinicians will have to maintain a high level of suspicion to detect
CD.
* "The Changing Nature of Adult Celiac Disease in the United States",
P H R Green, W Lo, et al, Columbia University College of Physicians
and Surgeons, New York, NY. Conclusion: In the 1990's patients
with CD are being diagnosed at an older age and have a shorter
duration of symptoms. Only 50% of patients present with diarrhea.
Screening of relatives and incidental discovery at endoscopy have
become important modes of diagnosis. Increased awareness of the
changing nature of CD in the U.S. should facilitate more widespread
recognition.
-=-=- -=-=-
College Bound Teens: Stressed out and overwhelmed enough? Don't make
it worse by dreading the "food thing". Other celiacs have gone to
college and survived. By now you know what you can and cannot eat so
state your needs. Don't be apathetic, be an advocate for yourself.
Remember CD is unique in that a specific food component is the culprit
that makes us sick. We don't have to rely on pharmaceuticals, just a
simple change in what we eat.
Make an appointment with the college dietitian-they all have
experience with specialized diets and will be happy to accommodate you
as an incoming student.
Speaking with Julie Lampie, RD, with Tufts University, she said, "Be
nice, but be firm and don't compromise your health. The food service
departments at all leading colleges and universities are more than
willing to set aside space in the cafeteria refrigerator for your
gluten-free food."
For more information you can call her at Tufts University at
617-627-2833. Or you can talk with a fellow celiac, graduate student
Laura Golstein. You can reach her at 11 Kent Court #2, Somerville, MA
02143, 617-628-0416, LGTufts98@AOL.com.
Return to the Table of Contents
..................................................
: :
: Excerpts from _The Nutmeg Celiac_ :
: --------------------------------- :
: Fall 1999 Phyllis & Manny Strumpf, editors :
: Nutmeg Celiac Group :
: 30 Lance Lane :
: Milford, CT 06460-7519 :
:................................................:
The Celiac Movement: Jane Trevett, a well-known local, regional, and
national advocate for celiacs, believes that [a major] goal of the
celiac movement is an effort to create more awareness in our
communities and encourage doctors to do preliminary testing so that
more celiacs can be diagnosed earlier.
"The celiac movement is a joint effort by national celiac
organizations, local support groups (including gastroenterologists),
the internet, and celiacs themselves to accomplish this goal. I have
had Celiac Disease (CD) for 34 years and I am thrilled at the progress
that has been made in many areas such as the availability of
gluten-free (GF) foods, cookbooks, and the ease of travel. However, I
am still frustrated to hear at many celiac meetings about the length
of time for diagnosis that still exists in the USA," she says.
Jane is one of 2,700 celiacs from throughout the world who go on line
daily to help others without hesitation. "Someone recently said that
groups such as this are one of the most satisfying proofs that people
care about each other," she notes.
"I have tremendous admiration for the many people who are working
tirelessly to make CD better understood. I am glad to be part of the
celiac movement to help in whatever way I can. Bette Hagman said in
one of her talks, 'No one is going to make it better for celiacs more
than other celiacs.'"
-=-=- -=-=-
An Editorial
------------
By the time you read this, Jerry Lewis will have completed another
24-hour telethon for Muscular Dystrophy (MD). He has made MD a
household word and raised millions of dollars.
When you open your weekly newsmagazine, a photo of Astronaut John
Glenn's wife in a public service ad tells us how she overcame
stuttering.
In a recent news release, Mary Tyler Moore, a lifelong diabetic,
announced a multimillion dollar grant for diabetes research.
Pick up your morning paper. Watch TV. Listen to your favorite radio
station. Scan roadside billboards. Everywhere you look and listen,
there are celebrities: professional athletes, Hollywood stars and TV
personalities, plugging their favorite causes.
Our frustration reached its peak when at our local supermarket we saw
prominently displayed a new brand of corn flakes (not gluten-free, of
course) named after a professional football player. Proceeds from the
sale of Flutie Flakes go toward research into a cure for a childhood
disease affecting Flutie's son.
And how can we forget Connecticut's own Paul Newman whose profits from
his salad dressings and other food items send thousands of seriously
ill kids to camp.
Don't get us wrong. We think it is commendable that celebrities use
their time, money, energy, and notoriety to help humanity. Whether
it's because of a personal experience, a desire to give back to the
community, or to gain public relations exposure matters little. The
bottom line is that we all benefit.
The University of Maryland's Center for Celiac Research confirms there
are more Americans than previously thought who have Celiac Disease
(CD). That means that as our population increases, so will the number
of celiacs.
We cannot believe, therefore, that there isn't one athlete, star, or
TV personality with CD or whose spouse, sibling, daughter or son isn't
gluten-intolerant.
We must stop hiding at the corner table feeling sorry for ourselves
and scrounging for research dollars from within the celiac community.
We must begin to communicate to as well as with the outside world.
How else will individuals with celiac symptoms know to suspect CD?
How else will physicians know to test for CD? How many potential
research dollars will continue to go elsewhere because they are being
sought aggressively by other health-related organizations and their
celebrity spokespersons?
As Beth Hillson of the Gluten-Free Pantry noted in her comments above,
we have a lot to be thankful for. We eat right, we are healthy, and
we do not suffer from more serious illness that requires special
treatment or pills. When my own gastroenterologist diagnosed me four
years ago, he said, "I've got good news. You're a celiac. It could
have been a lot worse."
Residents of Danbury and New Haven, Detroit and Los Angeles, New York
and Denver, Omaha and Pittsburgh, and in every other town and city in
the U.S. must stand up and be counted....and represented nationally.
We need someone with name recognition to make the public aware of CD
and raise funds to advance research at universities such as the
University of Maryland and Iowa and at Baylor. We need someone to
whom the food companies will listen. Those companies who depend upon
the bottom line must be made to realize that by expanding their
gluten-free product lines, they will benefit themselves and their
shareholders as well as celiacs.
We need a public figure to make our friends, families, shopkeepers,
neighbors, elected officials, and prospective contributors aware of
our gluten concerns so they will be more tolerant of our gluten
intolerance; comfortable and understanding of our "peculiar eating
habits"; and generous with donations for research.
Where is that spokesperson? It's time CSA and the other national
organizations and local support groups aggressively seek one or more.
What do we have to lose?
We have heard the excuse that doctors can't violate patient
confidences by asking them to help. We don't buy that. Certainly the
patient can say no. Ours is not a social disease that we dread
talking about in public due to embarrassment. It is a perfectly
appropriate disease to acknowledge. We do it every time we dine or
shop for food. My professional career brings me in contact with
famous and influential people, with many of whom I share lunch or a
"nosh." I'm candid about what I can and cannot eat. CD to me has
never been a negative issue. It should not be.
It's time we, like so many other worthwhile causes, found a national
spokesperson. It's time we stop feeling sorry for ourselves and stop
confining our celiac conversations to our support groups. The growing
numbers of celiacs warrants a public figure to speak on our behalf.
Perhaps Helen Keller expressed it best: "Science may have found a
cure for most evils but it has found no remedy for the worst of them
all--apathy of human beings."--Manny Strumpf
Return to the Table of Contents
References
----------
<1> "Researchers Discover Cause Of Type-I Diabetes", reported by
Reuters, published on the internet at http://dailynews.yahoo.com/
h/nm/19990830/sc/health_diabetes_7.html, on Monday, August 30,
1999, 5:02 pm ET.
<2> Reprinted from the February 1995 issue of The Sprue-nik Press,
pg. 2.
<3> "Sensitivity of Antiendomysium and Antigliadin Antibodies in
Untreated Celiac Disease: Disappointing in Clinical Practice"; K
Rostamie, J Kirckhaert, R Tiemessen, et al; _American Journal of
Gastroenterology_, 1999 vol. 94, pgs. 888-894.
<4> "/R Holiday recipes", by Gayle M. Chastain, from the CELIAC
Listserv archives on the Internet, posted Dec. 14, 1998. To
obtain a copy on the world wide web, go to http://maelstrom.
stjohns.edu/archives/celiac.html and click on "December 1998,
week 2."
Return to the Table of Contents
Recipe Page
-----------
**********************************************************************
Peanut Butter Cookies
1 cup white sugar
1 cup dark brown sugar
1 cup margarine
1 cup smooth peanut butter
1 whole egg plus 1 egg white
1 tsp. vanilla
1-1/2 GF flour mix**
1 cup bean flour
1-1/2 tsp. salt
1-1/2 tsp. baking soda
Cream the sugars and margarine. Add the peanut butter. Add the egg
and vanilla. Blend in the flours, salt, and baking soda.
Chill the dough for 1 hour. Drop by the spoonful onto a cookie sheet.
Bake at 350 degrees F for 6-7 minutes.
This recipe comes to us from our last meeting. The author is unknown.
**********************************************************************
Drop Peanut Butter Cookies
2 eggs, beaten
1/2 cup white sugar
1/2 cup brown sugar
1 cup Jif peanut butter
1/2 cup white rice flour
Mix all ingredients and bake on an ungreased pan at 350 degrees F.
Baking time is 10-17 minutes depending on how big your make them.
This recipe comes to us from our last meeting. The author is unknown.
**********************************************************************
Russian Tea Cakes
1 cup butter or margarine
1/2 cup powdered sugar
1 tsp. GF vanilla extract
1-1/2 cups rice flour
1/2 cup sweet rice flour
1 tsp. salt
1 tsp. xanthan gum
1 cup finely chopped pecans
Cream butter and sugar. Stir in the vanilla.
Thoroughly combine the flours, salt, xanthan gum and nuts. Add to the
butter mixture. Form the dough into 1 inch balls and place them on an
ungreased baking sheet.
Bake at 350 degrees F for 10-12 minutes. Cool on the sheet for 1-2
minutes. Remove and immediately roll them in powdered sugar. Cool
completely and roll again in additional powdered sugar. Makes
approximately three dozen cookies.
This recipe comes to us from Gayle Chastain on the CELIAC Listserv on
the internet.<4> It was brought to a meeting by a TCCSSG member
earlier this year.
**********************************************************************
Pear Bread
1/2 cup butter
1 cup granulated sugar
2 eggs
2 cups GF flour mix**
1/2 tsp. salt or less
1/2 tsp. baking soda
1 tsp. baking powder
1/8 tsp. nutmeg
1-1/2 tsp. xanthan gum
1/4 cup buttermilk
1 cup coarsely chopped, cored pears
1 tsp. vanilla
Cream the butter. Gradually beat in the sugar and add the eggs one at
a time.
Combine the dry ingredients. Add them to the egg mixture alternately
with the buttermilk.
Stir in the pears and vanilla. Pour the mixture into a 9x5x3 inch
loaf pan coated with GF cooking spray. Bake at 350 degrees F for 1
hour.
This recipe comes to us from Gloria Gavle. Gloria is a recently-
diagnosed celiac (May 1999). This was her first attempt to convert a
favorite recipe to be GF, and it was a resounding success.
**********************************************************************
Ron's Chewy
1 packet Dietary Specialties white cake mix
1 cup GF flour mix
1 rounded tsp. xanthan gum
1 large egg
1 cup plus 2 Tbsp. water
1 cup chopped dates
2 or more cups candied fruit
1 tsp. baking powder
Mix the dry ingredients.
Lightly beat the egg and stir in the water. Add to the dry mixture
and mix to make a medium batter. Stir/fold in the dates and candied
fruit.
Pour the mixture into a 9x9 inch cake pan. (Ron uses a glass pan.)
Bake at 350 degrees F for 50-55 minutes, until it is golden brown and
the cake pulls away from the edge of the pan. Allow to cool
thoroughly before cutting it.
This recipe comes to us from Ron DeCicco.
**********************************************************************
** GF flour mix:
6 cups white rice flour
2 cups potato starch (NOT the same as potato flour)
1 cup tapioca starch (also called tapioca flour)
Tri-County Celiac Sprue Support Group Officials:
------------------------------------------------
Physician Advisor: Thomas Alexander, M.D.
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
Secretaries: Marilynn Ponto
Pat Michael
Web Page Editor: Pam Murphy
Newsletter Editor: Jim Lyles
Contributing Editors: Tom & Carolyn Sullivan
Group E-mail address: tccssg@yahoo.com
Group web page: http://community.mlive.com/cc/celiac
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 tccssg@yahoo.com.
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