THE SPRUE-NIK PRESS
Published by the Tri-County Celiac Sprue Support Group,
a chapter of CSA/USA, Inc. serving southeastern Michigan
Volume 5, Number 3 April 1996
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..................................................
: What's Inside Search For :
: ------------- ---------- :
: In Remembrance of Toni Richardson . . -1- :
: Miscellaneous Notes . . . . . . . . . -2- :
: Traveling Tips . . . . . . . . . . . . -3- :
: Pharmaceutical Advice . . . . . . . . -4- :
: Newsletter Roundup . . . . . . . . . . -5- :
: Recipe Page . . . . . . . . . . . . . -6- :
:................................................:
Disclaimer
In Remembrance of Toni Richardson
----------------1----------------
by Mary Guerriero
As I write this, I am deeply saddened by our loss. Saturday, March
24, Toni Richardson passed away. She had emergency surgery the sixth
of February for a perforated gastric ulcer and was in ICU for many
weeks. Toni had a history of asthma and heart disease which
complicated her recovery. She had a number of surgeries in seven
weeks, and was so weak, she just didn't have the strength to recover.
Toni and I had talked different times about leaving your mark on this
world, and Toni certainly did. Toni was a retired biochemist. She
understood the properties of the various ingredients and she used her
expertise to experiment with and improve GF recipes. In our group it
was Toni who first tried working with methylcellulose, and then later
Clear Gel, in bread and cake recipes. Because of her efforts, many
people with celiac disease have a better quality of life. We now are
able to make wonderful hamburger buns, pizza, pasta, and angel food
cake, to name just a few of her recipes.
Toni also took it upon herself to buy and test equipment for preparing
gluten-free foods. She purchased two bread machines, two pasta
makers, and a heavy duty mixer. She talked to me about buying the new
Red Star bread machine, to see how it worked. I asked her why, since
she already had two other bread machines. She simply said, "Why,
that's my job; that's what I do for the group."
Toni was so generous with everyone. She was always the first one to
volunteer to bake for newly diagnosed people or if anyone was ill.
She nearly always brought samples of her latest recipes to the
meetings to share with the group. I remember one meeting in which she
spent hours making pizza for the entire group. She never complained
or asked for anything in return; for Toni it was enough to know she
was helping other celiacs live a better life.
She will be missed greatly by those of us who knew and loved her. I
am sure Toni will be keeping an eye on all of us. Hopefully, with
better education, people with celiac disease will be diagnosed at a
younger age and have a healthier and longer life due to people like
her.
We miss you, Toni. It's said that absence makes the heart grow
fonder, and we were already so fond of you. Thank you for all you
did.
-=-=-=-=-=-=-
Where are you Toni? Oh, I feel so alone.
Can it really be that we're now on our own?
You taught us that gluten-free could still taste great;
And that celiac disease was not an awful fate.
You always brought samples of your latest new treat
And we'd eat and then marvel at the absence of wheat.
You brought food for new celiacs, and those who were sick.
You were always willing to share your latest new trick.
You gave of yourself until you had no more to give;
Then, when you realized you had not long to live,
You slipped quietly away, without making a fuss.
You simply said, "I'm sorry," for having to leave us.
As if you should apologize! Oh, Toni, it's true:
We are the ones who should apologize to you!
Too many times, when you wanted to speak,
You heard, "Oh I'm so busy! How about next week?"
"Next week" seldom came; and now it never will.
But I know that your presence remains with us still;
For whenever the scent of fresh bread fills the air,
I shall think of you; our chef extraordinaire.
--Jim Lyles
Return to the Table of Contents
Miscellaneous Notes:
---------2----------
Elaine Hartsook PhD, RD, passed away on February 19, 1996. Elaine was
the Director of the Gluten Intolerance Group of North America and was
extremely respected for her activities in creating a medical awareness
of celiac disease. Her attention to detail, membership on national
advisory boards, and the wonderful style of presenting information
will be felt as a loss by all celiacs and their families.(1)
PLEVALEAN contains oats: PLEVALEAN is a combination of cherries in a
hamburger mixture that is both nutritious and lower fat. It has been
a real success story for a local Michigan man. PLEVALEAN is now used
in school lunch programs in Michigan. Unfortunately, it does contain
oat bran and oat fiber, so it is not advisable for celiacs. (Thank
you to Sandra Cartwright for sharing this information with us.)
Return to the Table of Contents
Traveling Tips
------3-------
At our March meeting we shared travel tips. Some of these are
highlighted here:
* When packing cookies & crackers, use plastic containers. GF
goods tend to crumble more easily, so plastic containers work
better than plastic bags.
* For breakfasts, slice and toast your GF bread ahead of time, and
then individually wrap it to take with you. That way, if you
don't have access to a toaster you can just have it warmed in a
microwave oven.
* Health Valley date nut and tropical fruit granola bars are
individually wrapped and keep for a long time. This makes them
simple to travel with. Also, dried fruit and raisins make good
travel food.
* Bumblebee Tuna sells small 3-packs that are perfect for
traveling.
* GF dehydrated soups are good for traveling.
* Several people related how accommodating Disneyland is to
celiacs.
* Take the restaurant card and give it to the waitperson, so they
can take it back and show it to the chef. The restaurant card
lays out clearly what you can and can't have, making it easier
for the chef to make suggestions as to what he/she can prepare
for you.
* At an unfamiliar restaurant, it is best to keep things simple.
Order basic food without a lot of added ingredients; you'll be
less likely to have a gluten "accident".
Return to the Table of Contents
Pharmaceutical Advice
----------4----------
Anne Laginess, Pharmacist
summarized by Jim Lyles
At our March meeting, Anne Laginess spoke. Anne is a registered staff
and clinical pharmacist at Henry Ford Hospital, where she has worked
for 17 years. She spoke with our group two years ago, and then spoke
at the national CSA/USA conference in Detroit later that same year.
What follows are some highlights of her talk.
Some pharmaceutical products contain gluten, generally in the inert
ingredients (also called excipients). You should be suspicious of any
of these ingredients, as they might or might not have come from a
gluten-containing grain:
starch hydrolyzed protein
cross linked starch modified food starch
sodium starch glycolate malt
hydrogenated vegetable oil maltodextrin
alcohol malt extract
pregelatinized starch
What is the significance of gluten in pharmaceutical products? Small
amounts of gluten in pharmaceutical products can be harmful to those
with celiac disease, particularly if the patient is taking the
medication for a long time.
There are conflicting reports on the effects of small amounts of
gluten on celiacs. Comparing the various studies is difficult, as
some refer to gluten, others to gliadin or prolamine. Here are some
examples of reported data regarding gluten in pharmaceuticals:
* In some celiacs 1-2 mg. of prolamine per day is toxic. In
others, 2-12 grams of gluten per day is tolerated without
symptoms.(2)
* 4 out of 10 patients who ingest 1-2 mg. gliadin per day for 6
weeks have symptoms. Patients may have no symptoms while
ingesting up to 5 grams of gluten per day, but their intestinal
mucosa does show damage.(3)
* Some pharmaceutical products may contain 0.015-1.84 mg. of
gliadin per dose.(4)
* In pharmaceutical products, the amount of wheat starch per dose
is 4-167 mg., providing up to 0.35 mg. of prolamine per dose.
If taken three times a day, this may cause a problem for a highly
sensitive celiac.(5)
There are several ways of determining if a pharmaceutical product
contains gluten:
1. Product Package Insert: This data is enclosed in each package of
tablets, capsules, etc., that the pharmacy receives. Check with
the pharmacist to see the insert; get your physician to request
it for you if necessary. This information is also available in
the Physician's Desk Reference (PDR), which you can usually find
at your local library.
2. Manufacturer of the Medication: Contact the manufacturer. The
PDR contains a list of address and phone numbers. Also, the
product packaging or product package insert usually contains the
address. [There is also a list of about 250 pharmaceutical
companies with addresses and phone numbers in your new patient
packet, dated October 1994.--editor]
3. Drug Information Centers: Specialized information centers are
available to health care practitioners at many teaching
hospitals. If your physician is affiliated with a teaching
hospital, ask for help from this source.
4. Drug Information Centers for Consumers: One service based in
Chicago is called "Call-Our-Pharmacist". It is available day or
night. Call 1-800-522-5225 for information about the service.
Call 1-900-903-7847 for verbal and mailed information; have the
drug name and letters/numbers off of the capsule/tablet if
possible. [The cost for the 900 number is $1.99 per
minute.--editor]
Be careful about evaluating data you get from manufacturers and drug
information centers. Ask them where they got their information.
Sometimes you'll get conflicting data from different sources.
Consider these points:
* Drug manufacturers tend to concentrate on the active ingredients
in the medications they produce, and do not always know if an
inert ingredient contains gluten.
* Drug information centers obtain their information from published
articles and from manufacturers.
* Many published articles regarding gluten in pharmaceuticals refer
to data obtained from manufacturers rather than from independent
laboratory testing.
* Manufacturers continually change formulas and suppliers,
particularly with generic equivalent drugs. Ask for both the
distributor name and the manufacturer name (and the package
insert, if it's available) every time you have a prescription
filled. Compare it to your previous information to see if
anything has changed.
How can you avoid gluten in pharmaceuticals? If you have a choice:
* Choose smaller tablets containing the same dosage; there will be
less inert ingredients. Or choose a higher strength version, and
use half tablets.
* Avoid taking pharmaceuticals that aren't really necessary.
* For children, crush tablets and mix with applesauce, instead of
buying elixirs with alcohol.
* On the other hand, consider alcohol-free liquids when the tablet
form contains gluten.
* Check different brands. The active ingredients may be the same,
but the inert ingredients often vary.
* Try a different approach in treating symptoms. For example,
consider inhalers, salt water gargles and nose sprays (short-term
use ONLY) for cold symptoms. Eat fresh fruits/prunes and take a
daily walk instead of using a laxative.
Anne Laginess suggests reporting adverse drug reactions to the Food &
Drug Administration (FDA) and to the manufacturer. Your health care
provider already does this when there is a serious adverse drug
reaction. However, the FDA form does provide a place to indicate if
you are not a health professional. If individual celiacs report all
gluten reactions to medications, the FDA and drug manufacturers will
begin to accumulate data on celiacs. This will promote awareness and
hopefully will cause manufacturers to scrutinize ingredients more
carefully when drugs are reformulated.
Anne provided a copy of this form, which you can get by calling the
800 numbers listed below. Feel free to copy this form and fill it out
each time you have a problem with a medication or dietary supplement.
On the back of the form are some tips regarding the use of the form
which I'll highlight here:
* File a report even if you're not certain the product caused the
event, or you don't have all the details.
* Report product problems such as quality, performance, or safety
concerns such as suspected contamination, defective components,
or poor packaging or labeling.
* Fill in the sections on the form that apply to your report. (Use
section C and skip section D for gluten-related problems.)
Attach additional pages if needed. Send the form to the FDA or
the manufacturer (or both).
* Important phone numbers: To fax the report call (800) FDA-0178.
To file a report by modem, call (800) FDA-7737. For more
information, or to report quality problems, call (800) FDA-1088.
Return to the Table of Contents
Newsletter Roundup
---------5--------
Compiled by Jim Lyles
We exchange newsletters with several other celiac groups. In this
article I will summarize some of what we've learned from our
newsletter swapping.
.....................................................
: :
: Excerpts from the CSA of Greater Chicago :
: ---------------------------------------- :
: newsletter: Sept. 1995 Gladys Johnson, Editor :
: 943 Fern Ave. :
: Elmhurst, IL 60126 :
:...................................................:
Sargento Foods, Inc. sent a letter to Connie Cowan stating that the
following cheeses DO contain gluten, in the form of wheat flour mixed
in with the spices: Shredded Imitation Mozzarella Cheese, Classic
Supreme Shredded Cheese for Tacos, and Fancy Supreme Shredded Cheese
for Nachos & Tacos.
.............................................
: :
: Excerpts from _CDF Newsletter_ :
: ------------------------------ :
: Winter 1996 Elaine Monarch, publisher :
: Celiac Disease Foundation :
: 13251 Ventura Blvd., Suite 3 :
: Studio City, CA 91604-1838 :
:...........................................:
Lactose Intolerance is a problem for nearly 50 million Americans. The
percentages vary among different ethnic and racial groups: Over 80%
of Asian-Americans, 79% of Native Americans, 75% of African-Americans,
51% of Hispanic Americans, and 21% of Caucasian Americans are lactose
intolerant. The intolerance is caused by too little lactase, an
enzyme that breaks down lactose during digestion. Lactose isnt
harmful, but it does cause uncomfortable symptoms such as abdominal
bloating, cramps, gas, and diarrhea. These symptoms usually develop
30 minutes to 2 hours after consuming too much lactose. There are two
ways to handle lactose intolerance: Consume less lactose, or take
lactase supplements to aid in digesting lactose.(6)
[Celiacs following a GF diet are no more likely to be lactose
intolerant than non-celiacs. Untreated celiacs are often temporarily
lactose intolerant due to villi damage, as the lactase enzyme is
produced on the tips of healthy villi. Once the villi are healed,
then temporary lactose intolerance should not be a problem. If a
celiac remain lactose intolerant despite following a GF diet, then
that celiac is simply one of the many that are lactose intolerant
anyway.--editor]
-=-=- -=-=-
Restaurant Eating: To make restaurant eating more enjoyable choose
entrees that are steamed, poached, broiled, roasted, baked, or cooked
in their own juices. Fish is almost always a good choice. Avoid
anything fried, sauted, or cooked in sauces unless you are certain it
is GF.
-=-=- -=-=-
"Leave Your Drugs in the chemist's pot if you can heal the patient
with food."--Hippocrates
..........................................................
: :
: Excerpts from _The Celi-Active Newsline_ :
: ---------------------------------------- :
: Volume 1-1996 June Lawrie, editor :
: The Celiac Support Group of N.W. Florida :
: 229 Paschal Ave. :
: Mary Esther, FL 32569 :
:........................................................:
Jowar Flour is a new product on the market, but an ancient flour used
in many parts of the world. It is made from the tassels of the
sorghum plant and is darker in color than wheat flour. June Lawrie,
editor of The Celi-Active Newsline, used it recently to make some
excellent pancakes. She also used it as a coating for chicken with
good results. It keeps well without refrigeration, and does not
become bitter tasting with age. For more information or a price list,
write to Jowar Products, 113 Hickory St., Hereford, TX 79045, or call
(806) 364-3258.
-=-=- -=-=-
Fosamax is a new medication for treating osteoporosis, which untreated
celiacs are at a higher risk of developing. It is made by Merck. It
contains no gluten. It has these effects:
* It reduces the activity of the cells that cause bone loss.
* It decreases the faster rate of bone loss that tends to occur
after menopause.
* It increases the amount of bone in most patients.
-=-=- -=-=-
Dermatitis Herpetiformis (DH) is a severely itchy skin condition that
often starts abruptly affecting the elbows, knees, buttocks, scalp,
and back. It usually starts as little bumps that can become tiny
blisters, which are then usually scratched off. It usually occurs in
many different areas, and is caused by IgA deposits under the skin.
These occur in response to the ingestion of gluten in the diet. Once
there, these deposits are only slowly cleared away by the body even
when the individual is GF. Most people with DH do not have obvious
gastrointestinal symptoms, but nearly all do have some damage in the
intestine and the potential for all of the nutritional complications
of untreated CD. It is difficult to detect without a long history of
the rash. Treatment for DH is twofold: a) Remove the underlying
cause by going on a GF diet (for life) and b) Suppress the skin
lesions with drugs such as Dapsone or some other sulphones until such
time as the drug is no longer needed.(7)
-=-=- -=-=-
Muffin Tips: When making muffins try adding shredded peeled zucchini,
shredded scraped carrots, or any peeled shredded fresh fruit (sprinkle
with lemon juice to keep them from darkening). You can also add a
tablespoon of dry buttermilk powder or even yogurt for a lighter
muffin. Try putting half the batter in the muffin pan, a teaspoon of
your favorite jam, and the then the rest of the batter. Be careful if
you eat them straight from the oven, as the jam can burn your mouth
badly.
.........................................................
: :
: Excerpts from the Gluten Free Gang Support Group :
: ------------------------------------------------ :
: newsletter: Issue IV Mary Kay Sharrett, co-editor :
: Children's Hospital :
: 700 Children's Drive :
: Columbus, OH 43205 :
:.......................................................:
Rice Dream is NOT GF! The company uses barley enzymes which, in a
report released by the company, is measurable in the final product
(including ice cream substitutes).
-=-=- -=-=-
Ragu has two recipe books easily converted to GF. Call (800) 328-7248
to request copies.
...............................................................
: :
: Excerpts from the Gluten Intolerance Group of North America :
: ----------------------------------------------------------- :
: newsletter: Aug. 1995 PO Box 23053 :
: newsletter: Oct. 1995 Seattle, WA 98102-0353 :
:.............................................................:
The National Digestive Diseases Information Clearinghouse
(NDDIC) provides fact sheets and a variety of other materials free of
charge. Here is a partial list, containing some of the newer or more
frequently requested publications:
"Stomach and Duodenal Ulcers"
"Digestive Disease Statistics"
"Irritable Bowel Syndrome"
"Facts and Fallacies About Digestive Diseases"
"Your Digestive System and How it Works"
"Lactose Intolerance"
"Crohn's Disease"
"Ulcerative Colitis"
NDDIC also publishes DD Notes, a free bulletin containing information
on research and education efforts in the digestive disease community.
For more information and an order form for materials, write to 2
Information Way, Bethesda, MD 20892-3570; or call (301) 654-3810. On
the internet you can access their home page at http://www.niddk.nih.
gov/.
-=-=- -=-=-
GIG's Annual Meeting will begin on Saturday April 27th, at 3 pm and
will end on Sunday April 28th at 3 pm. Those arriving Friday evening
will have GF meal options at the West Coast Bellevue Hotel and
opportunities for exploring the many cultural and scenic offerings of
the Pacific Northwest before the meeting on Saturday.
References
----------
(1) From the CEL-GPS listproc, on the Internet, Michael Jones,
discussion of February 19, 1996.
(2) _New Zealand Medical Journal_, Aug. 1993.
(3) _Panminerva Medical_, April-June 1991.
(4) _Journal of Pediatric Gastroenterology & Nutrition_, Vol. 19,
1994.
(5) _New Zealand Medical Journal_, Aug. 1993.
(6) From Rosemarie L. Fisher, MD, professor of medicine at Yale
University School of Medicine and consultant in Gastroenterology
and Nutrition Support at Yale-New Haven Hospital.
(7) Joseph Murray, MD, of the Celiac Disease Clinic at the University
of Iowa.
Return to the Table of Contents
Recipe Page
-----6-----
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Rhoda's Biscotti
1 stick (1/4 lb.) margarine 2 cups rice flour
1-1/4 cups sugar 1 tsp. xanthan gum
4 eggs 3/4 cup dried cherries
1 tsp. baking powder 2 cups whole pecans
2 tsp. vanilla
Mix the margarine and sugar. Add the eggs and beat. Add the baking
powder, vanilla, flour, and xanthan gum. Mix the cherries and pecans
into the mixture by hand.
Place the mixture into greased loaf pans and cook for 30 minutes at
350 degrees F. Cool, remove from the pans, and freeze.
Let thaw 5 minutes, and then cut into 1/4 inch slices. Bake the
slices at 350 degrees F until they are brown.
This recipe comes to us from Rhoda Gross.
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Brown Rice Baking Mix Banana Spice Bars
1-3/4 cups Ener-G Brown Rice 2 eggs, well beaten
Baking Mix 1/3 cup oil
2 tsp. baking powder 1 cup ripe mashed bananas
1/4 tsp. baking soda (2 or 3 bananas)
1 tsp. cinnamon 1/2 cup sunflower seeds (optional)
1/4 tsp. ground cloves 1/2 cup raisins (optional)
1/2 cup honey
Preheat the oven to 350 degrees F.
Sift the baking mix, baking powder, baking soda, cinnamon, and cloves
together until all lumps are gone.
Combine the honey, eggs, oil, and mashed bananas. Add the banana
mixture to the dry mixture and beat until smooth. Add the sunflower
seeds and raisins (if desired) and pour into a a greased 7-1/2" x 4" x
2" loaf pan.
Bake for 50-65 minutes until a toothpick inserted in the center comes
out clean. Remove from the pan and cool before slicing.
This recipe came from one of our recent meetings.
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Choco-Coco Pecan Crisps
1/2 cup butter or margarine, 1-1/2 cups GF flour mix**
softened 1/3 cup unsweetened cocoa
1 cup packed light brown sugar 1/2 tsp. baking soda
1 egg 1 cup chopped pecans
1 tsp. vanilla 1 cup flaked coconut
Cream the butter and sugar in a large bowl until light and fluffy.
Beat in the egg and vanilla.
Combine the flour, cocoa, and baking soda and sift together. Mix in
the pecans. Add the dry mixture to the creamed mixture.
Sprinkle coconut on the work surface. Divided the dough into two
parts. Shape each part into a roll about 1-1/2 inches in diameter;
roll in the coconut until thickly coated. Wrap the rolls in plastic
wrap and chill until firm at least one hour. May be kept in the
refrigerator for up to 2 weeks, or in the freezer for up to 6 weeks.
Preheat the oven to 350 degrees F. Line cookie sheets with parchment
or leave ungreased. Cut the rolls into 1/8 inch thick slices. Place
the slices 2 inches apart on the cookie sheets.
Bake 10-13 minutes or until firm but not overly browned. Remove to
wire racks to cool. Makes about 6 dozen cookies.
This recipe came from one of our recent meetings. It was adapted from
the book _Christmas Cookies_.
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Potato Salad
10-12 small potatoes, boiled and 1 green onion, chopped
cut into small pieces 1/2 white onion, chopped
3 hard-boiled eggs, chopped 1 cup GF mayonnaise
2 ribs celery, chopped salt and pepper to taste
Mix all ingredient together thoroughly and chill.
This recipe came from one of our previous family potluck gatherings.
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** 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)
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Tri-County Celiac Sprue Support Group Officials:
------------------------------------------------
Physician Advisor: Thomas Alexander, M.D.
Dietitian Advisor: Dorothy Vaughan, R.D.
President: Diane Morof
Vice President: Mary Guerriero
Past President: Kathy Davis
Secretary: Denise Parsons
Newsletter Editor: Jim Lyles (200-2214@mcimail.com)
Disclaimer:
-----------
All recommendations, information, dietary suggestions, menus, shopping
guide suggestions, medical updates, miscellaneous articles, and
recipes in this newsletter are intended for the benefit of our
members, readers, and the general public. No liability is assumed by
the Tri-County Celiac Sprue Support Group or any of its members.
Information in _The Sprue-nik Press_ has not been submitted for
approval to the CSA/USA medical board; however it has been approved by
our physician and dietitian advisors. Individuals should consult with
their physicians and dietitians before following any medical or
dietary recommendations in _The Sprue-nik Press_.
Original material used in _The Sprue-nik Press_ is placed in the
public domain for the benefit of all celiacs. The information is not
copyrighted to facilitate the easy exchange of celiac information.
Feel free to reproduce any portion of this newsletter, unless it
specifically states otherwise. All we ask is that you indicate where
the information came from.
_The Sprue-nik Press_ is published by the Tri-County Celiac Sprue
Support Group (TCCSSG), a local chapter of CSA/USA located in
southeast Michigan. Members receive this newsletter, a shopping
guide, and a new member packet full of articles and useful
information. Mail-in subscriptions are welcome. For subscription
information, send a note to Jim Lyles, at (200-2214@mcimail.com).