THE SPRUE-NIK PRESS
Published by the Tri-County Celiac Sprue Support Group,
a chapter of CSA/USA, Inc. serving southeastern Michigan
Seventeenth Edition February 1995
**********************************************************************
..................................................
: What's Inside Search For :
: ------------- ---------- :
: Miscellaneous Notes . . . . . . . . . -1- :
: January Small Group Discussions . . . -2- :
: ACS Conference--Panel Discussion . . . -3- :
: Highlights--1994 ACS Conference . . . -4- :
: Let's Get Organized . . . . . . . . . -5- :
:................................................:
Disclaimer
Miscellaneous Notes:
---------1----------
The American Celiac Society will hold this year's Celiac Sprue
Conference on July 14-15 in Baltimore, Maryland. We got a lot out of
last year's conference and will probably be sending some people again
this year.
Don't be fooled by these grains: Spelt and kamut are both classified
on the grain chart as Triticum, which is the same as wheat. Both of
the grains contain gluten, and should be entirely avoided by anyone
who has celiac disease.
If you find problems with food products not being appropriately
labeled, contact the National Exchange for Food Labeling Education,
Food & Nutrition Information, National Agriculture 304-10301
Baltimore Blvd., Beltsville, MD 20705-2351. The phone number is
301/504-5719.
From Marion MacLeod:
--------------------
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 from the January Meeting:
------------------------2------------------------
It is hard to capture on paper the results from five separate
small-group discussions, but I'll try anyway. Here are some of the
highlights:
* Whenever you eat out, take the CSA/USA restaurant card with you.
It helps to call ahead when visiting an unfamiliar restaurant.
It also helps if you eat out on days and at times when the
restaurant is not busy.
* Be careful in following your dietitian's advice for celiac
disease. Most dietitians don't know much about celiac disease,
and could make some mistakes. If you have any doubts or
questions, feel free to consult with our dietitian advisor,
Dorothy Vaughan. Remember, not only is she a dietitian, she is
also a celiac herself and must live with the same diet
restrictions you have.
* Some good area restaurants to try: Cooker's, Outback, Sweet
Lorraine's, and Applebee's.
* Communion at church: Some celiacs simply refuse to take the
host. Some provide their own host, on a separate plate, to the
priest/minister. Some ask to partake of the wine/juice in place
of the bread.
* Sembai rice crackers keep well and were highly recommended.
* The Chocolate Truffles produced by Great Pacific Dessert Company
appear to be gluten-free (according to the ingredients), and
"are to die for" according to one of our chocoholic members.
* Fearn produces a pancake and baking mix that is gluten-free and
was highly recommended. (It's not quite at the "to die for"
level, but none-the-less is very good.)
* If you suffer from Dermatitis Herpeteformis (DH), you need to be
careful in selecting shampoos. Some of them have wheat products
in them, and apparently can cause fresh skin outbreaks in the
scalps of DH sufferers.
* When it comes to making pizza, everyone agreed that it is best
to use Toni Richardson's recipe for pizza shells. Actually,
it's a good rule of thumb to look for Toni's version of any
recipe before trying any others.
Return to the Table of Contents
American Celiac Society--Panel Discussion
--------------------3--------------------
summarized by Jim Lyles
The American Celiac Society held a conference on June 10-11, 1994,
during which a panel discussion was held. The panelists were:
Ms. Nancy Anderson, MS, Ed
Ms. Annette Bentley
Dr. Alessio Fasano
Laurie Schussel, RD
Nancy Winouski, CPNP
This panel fielded questions from the audience. This article
summarizes some of the questions raised and the answers given by the
panel.
Q: I heard wheat starch is sometimes used as a binder in charcoal
briquettes. Will gluten from the charcoal transfer onto the food
that is cooked over it?
A: None of the panelists had heard of this, and none could offer
an opinion as to whether the food would be safe to eat. (Author's
note: As of April 1994, Chef's Wood 100% Natural Mesquite Charcoal
was listed as being gluten-free.)
Q: What about natural flavorings?
A: This is a catch-all term: If it is animal, vegetable, or even
petroleum based, it can be considered "natural". (Author's note:
There is no legal definition of the term "natural" with regard to
food products.) Artificial flavorings tend to be chemical in nature,
which means they are concocted in a lab instead of being extracted
from plant, animal, or petroleum products. Natural flavorings could
be extracted from sludge or by-products derived from grains,
including wheat and barley. There is no way of knowing from the
product label; you would have to write to the manufacturer to know
for sure.
Q: With all the limitations in what I can eat, how can I be sure
to get a balanced diet?
A: Look for products that are a good source of fiber. For
example, brown rice flour, popcorn, and beans all contain a lot more
fiber than white rice flour. Also fresh fruits and vegetables all
have a lot of fiber, as well as many other important nutrients. Rice
bran is a good source of supplemental fiber and is available from
some of the mail order companies.
Be careful when taking fiber supplements; some of them are not
gluten-free. For example, only the plain unflavored variety of
Metamucil is gluten-free; avoid the other varieties. The panelists
that Fibercon was okay.
Warning: If you've only recently been diagnosed and still
suffer from bloating, beans will probably make you uncomfortable.
You may want to avoid beans until the bloating symptom has
disappeared.
Q: Concerning fat content: Many recipes for bread, etc., contain a
lot of butter, oil, eggs, mayonnaise, and other high fat foods.
Since I have fewer choices on this diet, how can I reduce the amount
of fat called for in recipes?
A: First, look at your overall diet. Are there things that are
easy to change? For example, switch from whole or 2% milk to 1/2% or
skim milk. Do you buy leaner cuts of meat? Eat turkey and chicken
more often. When you buy ground turkey or chicken, be sure to get
the kind that does not include the skin.
Next, look at the fats you pour or spread onto prepared foods:
butter, salad dressings, etc. Are you using the lower-fat varieties
of these products? Use them less frequently, and in smaller amounts.
If you are having a weight problem, limit the fats you pour or spread
onto foods.
Most bakers have found you can use two egg whites instead of
one egg in most recipes. You'll get better results if you beat the
egg whites. (Author's note: You can also use Egg Beaters or a
similar product, so long as the product is gluten-free.) However, it
was pointed out that one to three eggs spread throughout an entire
loaf of bread is not really a big source of fat or cholesterol.
You'll get better results from reducing the fats you pour or spread
onto foods.
Fats are very calorie-dense. A teaspoon of fat is about 45
calories, whereas a teaspoon of sugar is only 15 calories. For
example, a baked potato has about 80 calories, which isn't too bad.
But if you add a tablespoon of butter, you've just added an
additional 135 calories. Cutting back to a teaspoon of butter
eliminates 90 calories, which is more than the potato itself has.
Q: What can you tell me about the new home gluten test kits?
A: In reality, these kits test for the presence of wheat, barley,
and rye. It does not test for the presence of oats. Annette Bentley
believes the test is fairly accurate. She tried it on a number of
products. Gluten-free products tested negative, regular bread and
other gluten-containing products tested positive. She believes you
can rely on the test as long as you know the product does not contain
oats. (Author's note: I would question the validity of the test.
Does it pick up minute amounts of gluten, such as might be found in
vinegar distilled from wheat? Since oats contain gluten, the test
must not be detecting gluten itself, but some other agent found in
wheat, rye, and barley, but not in oats. What if that other agent is
removed during processing? Our group does not recommend using these
tests.)
Q: What about medications?
A: There is an important difference between over-the-counter and
prescription drugs. For prescription drugs, ALL ingredients must be
listed. However, for over-the- counter drugs, only the active
ingredients need to be listed. The inert ingredients might contain
gluten, so if they are not listed you should avoid using the product.
(Author's note: For medications, do not assume that "starch" means
"corn starch", as it does with foods. The labeling laws regarding
medications and foods are different in this respect.)
With prescription drugs, often the generic equivalents have
different inert ingredients. Therefore, when a doctor knows of your
gluten-free diet and prescribes a drug, make sure the drug store does
not substitute a generic equivalent. Have your doctor write
"Dispense as Written" on the subscription form to avoid an unintended
substitution.
Return to the Table of Contents
Miscellaneous Highlights from
the 1994 American Celiac Society Conference
---------------------4---------------------
summarized by Jim Lyles
The American Celiac Society held a conference on June 10-11, 1994.
Three of the sessions have been summarized in separate articles.
This article highlights the remaining sessions of the conference.
I've grouped the comments by speaker. In some cases I've grouped
comments from different times and settings. For instance, some of
the information came from presentations, some from a question and
answer session on Saturday, and some from informal conversations
during lunch or dinner.
Glen Gelber, Digestive Disease Coalition, on current legislation
----------------------------------------------------------------
There is a lot of value in contacting your congressman. Form
letters, where you place a check by your opinion, are usually
ignored. However, letters that you write yourself will get some
attention. They will be read and responded to, at the least.
A unified approach by a single national organization, with four or
five specific goals or issues, gives you a better chance of getting
the type of legislative action you want from the federal government.
Mary Louise Endriecht, Pharmacia (a Swedish pharmaceutical company)
-------------------------------------------------------------------
The incidence of celiac disease amongst children in Sweden appears to
be 10 times as frequent as in Denmark, a neighboring country. The
two populations probably have a similar genetic makeup. The
difference may be that in Sweden, they go looking for celiac disease;
whereas in Denmark, they wait until they find it. In Sweden, they
take a more aggressive strategy; they look for celiac disease as a
possible explanation of many symptoms. In Denmark and countries like
the United State these same symptoms are unlikely to raise suspicions
of celiac disease. This implies that in the United States there may
be a large number of undiagnosed celiacs, because we don't go looking
for the problem, and in many cases the symptoms aren't severe enough
to be recognized.
One-year-old celiacs in Sweden are healthy, chubby, cute kids. They
don't have any symptoms of the celiac disease because it is detected
before it becomes a problem.
Annette Bentley, American Celiac Society Dietary Support Coalition
------------------------------------------------------------------
Untreated celiacs suffering from malabsorption often have
psychological problems. These can be due, in part, to the effects of
malnutrition on the brain. Most children and many adults return to a
healthy mental state after responding to a gluten-free diet.
However, after years of suffering from untreated celiac disease, some
adults suffer lasting psychological effects even after the gut is
healed and they are getting proper nutrition. Misinformation and
conflicting information about what you can and can't eat is
psychologically stressful for a celiac. This is compounded by the
lack of knowledge that you doctor and/or nutritionist might have
about the disease.
For some celiacs, there can be problems getting health insurance. In
some cases, celiac disease is considered a pre-existing condition,
and any expenses related to celiac disease are not covered. One of
the conference attendees involved in the insurance industry spoke on
this point. He said that in New York and New Jersey this is not a
problem. He could not speak about anywhere else, other than to state
that he believed the trend was going to be similar all across the
country, so that this should not be an issue for long.
Annette encouraged involvement in a support group. A support group
can be a group of local celiacs that meet regularly, or if you live
in a remote area it can be a number of other celiacs that you call on
the phone regularly. Use the support group; lean on each other and
help each other; share moods and ideas.
Dr. Joseph Murray, University of Iowa
-------------------------------------
Duodenal ulcers occur in the same area of the small intestine where
celiac damage occurs. This type of ulcer occurs more frequently in
untreated celiacs than in the general population. This may be
because the area is already damaged and more vulnerable to the
bacteria that Dr. Murray believes is related to ulcers. Many
patients with undiagnosed celiac disease are incorrectly labelled as
having peptic ulcer disease.
Question: Is there a connection between high cholesterol and celiac
disease? The short answer is no. Many untreated celiacs tend to
have low cholesterol because their damaged intestine doesn't absorb
anything well, including cholesterol. As the gut heals, cholesterol
levels tend to go up into the normal range. For some celiacs, just
as with some non-celiacs, the cholesterol will continue to rise until
it reaches an unsafe level. However, this does not happen any more
often with celiacs as with non-celiacs.
Untreated celiac women often have low estrogen levels and an erratic
or non-existent menstrual cycle. In both men and women fertility can
be affected and rarely is the major manifestation of celiac disease.
For young untreated celiac girls, the onset of menarche can be
delayed. Like so many other symptoms, these problems are caused by
malabsorption. Once the gut heals, these problems are usually
eliminated. Note: Women with a long history of malabsorption will
sometimes reach menopause at a younger age; in some cases as early as
in their late twenty's.
The bloating and stomach distention associated with untreated celiac
disease is probably being caused by poor digestion. Milk sugars are
not being broken down, along with other sugars. Bacteria then
convert these sugars to gas and liquid. If you are experiencing
thisas a diagnosed celiac, then the first concern is: Are you really
gluten-free? Most celiacs are lactose-intolerant when they are first
diagnosed. However, about 95% are able to drink milk once the gut
has healed. The remaining 5% represent those who would have had
lactose intolerance even without the celiac disease.
Celiac patients should be followed by a gastroenterologist or
pediatric gastroenterologist with an interest in celiac disease.
These may be hard to find. Check with a local celiac support group
to get some suggestions. If you can't find a gastroenterologist
interested in celiac disease, then you may be better off with an
internist or general practitioner that has the disease, has a family
member with the disease, or has at least shown an interest in
learning more about the disease and is willing to talk about it.
There is nothing better than a doctor that will listen to you with an
open mind.
For celiac-related blood tests, how important is the selection of the
lab that does the testing? Results can vary from one lab to another.
A person that has symptoms of the disease should not let negative
test results convince him that he does not have celiac disease. He
should consider a biopsy, to be sure of the results.
Dr. Alessio Fasano, University of Maryland
------------------------------------------
A question was raised: Can a baby receive gluten through breast milk?
Dr. Fasano stated that it has never been described that gluten can go
through breast glands. A related question was raised: Can we get
gluten by drinking milk from a cow that has eaten wheat? The answer
is no. Nor can you get gluten by eating meat from an animal that has
eaten wheat.
Question: Is there an association between celiac disease and
attention deficit or hyperactivity in children? Yes, but only for
untreated celiacs. Once the child goes on a gluten-free diet, these
problems tend to disappear. A related question: Is there a link
between behavioral problems and celiac disease in children? Once
again, the answer is yes, but only for untreated celiacs. It is the
malnutrition that leads to the problem.
Dr. J. Chopra, FDA, speaking on the new labeling laws.
------------------------------------------------------
One of the goals of the new labeling law was to highlight the more
important nutrients. For example, in a healthy diet you get no more
than 30% of your calories from fat. In this country, the average is
about 37%. Therefore, the new labels stress fat content and break
down the types of fat.
Serving sizes have been standardized, to make comparison shopping
easier. For example, carbonated beverage containers previously
listed six, eight, and twelve ounces as serving sizes. Under the new
law, the standardized serving size is eight ounces.
Many of the vitamins and minerals listed on the old labels are no
longer listed. Nutrients such as thiamin and riboflavin do not
appear on the new label because most people get adequate amounts of
these; they aren't a concern in this country.
The daily percentages on the label are based on a daily intake of
2,000 calories. The average adult leading a sedentary lifestyle
normally would maintain their current weight with 2,000 calories per
day.
The new law requires all ingredients to be listed. In the past,
small amounts of an ingredient did not have to be listed. The new
law states that any ingredient present in quantities of 10 parts per
million or higher must be listed on the label. This should be a big
help in eliminating unknown gluten contamination in processed foods.
If fresh fruits and vegetables are coated with anything, then the
coating must be listed as an ingredient on the packaging or on a
placard posted with the produce in the store. These coatings are
usually petroleum-based waxes, which do not cause celiacs any
trouble.
The new law requires manufacturers to immediately update the label
whenever the ingredients of a product change.
Return to the Table of Contents
Let's Get Organized
---------5---------
by Kathy Wagerson
Getting organized in the kitchen can be a little overwhelming for a
newly diagnosed celiac. You should start by reviewing your herbs and
spices. Do any of them have a wheat filler? (Curry, cinnamon,
mustard, paprika, and turmeric are possibilities.) Also review
flavorings, baking powder, and vinegars. When in doubt, throw it out
(or save it for your non-celiac family members.)
Next, you need to make it easy for all family members to keep track
of which items are gluten-free (GF) and which ones aren't, so the GF
products don't become cross- contaminated with traces of gluten. One
method is to place bright stickers on all GF products. Another is to
remove non-GF items from baking and cooking cupboards and store them
away from the main kitchen area.
There are a number of gluten-free flours and thickening agents
available for you to used instead of wheat flour. Your new member
packet contains a list of these items, and explains how each can be
used. It also contains a chart showing various combinations and
quantities of flours you can substitute for one cup of wheat flour.
You might find it convenient to fasten this list and chart to the
inside cupboard door where you keep these products. You can add your
own notations to the list as you gain experience in baking with these
flours.
Some of the GF flours and thickeners have a longer shelf life than
others. Those with a shorter shelf life should be kept in the
freezer to maintain good flavor. I keep my flours and thickeners as
follows:
Shelf Freezer
----------------------------------- ----------------
rice flour corn flour brown rice flour
sweet rice flour cornstarch rice bran
potato starch flour xanthan gum rice polish
tapioca flour/starch guar gum soy flour
methylcellullose
Betty Hagman is the author of The Gluten-Free Gourmet and More From
the Gluten-Free Gourmet. She describes a GF mixture used in many of
her recipes. I keep a canister containing the GF mixture in my
cupboard. To make the GF mixture, combine:
2 cups white rice flour
2/3 cup potato starch flour
1/3 cup tapioca flour/starch
Note that white rice flour and brown rice flour can be used
interchangeably except where the color is important.
Potato flour is not the same as potato starch flour. Potato flour is
a heavy flour that can often be replaced with GF potato buds or
mashed potatoes.
When adding xanthan gum as a binder in recipes, be sure to mix it in
well with the flours. A general rule of thumb is:
for cakes: 1/4 teaspoon per cup of GF flour
for breads: 1 teaspoon per cup of GF flour
for pizza crust: 2 teaspoons per cup of GF flour
When making up GF breads, cakes, etc., I find it handy to prepare two
batches of the dry ingredients and then save one of them for another
day. This cuts out a lot of prep time every other time you bake.
Save your stale GF bread and your baking mistakes; these can be used
to make stuffing. To make them into bread crumbs, dry them in single
layers in your oven, with the temperature at 200 degrees, then put
them in a blender or food processor and grind them into crumbs. The
crumbs can then be stored in the freezer for future use.
You can make a pie crust with stale GF cookies, flavored rice
crackers, or crushed GF cereal. Just add sugar and melted
margarine/butter, shake, and spread out in a pie pan. Add a little
sugar and cinnamon to achieve a taste like graham cracker crumbs.
Try to set up and plan several meals each week. Plan a crockpot meal
for days when you are especially busy. Prepare the ingredients the
night before and store them in the refrigerator. Put the crock on
the base in the morning, set a timer, and your meal will be ready and
waiting for you at dinner time.
I recommend using fresh mushrooms over canned ones; they add much
more flavor and body. You can just slice them and then store them in
the freezer until they are needed.
Save leftover gravies, or make double, and then freeze them in
one-cup portions. These work great in casseroles and soups. Freeze
single portion meals for lunches and dinners. These work well if
gluten meals are being served and you don't feel like cooking double.
Make ahead GF cream soups and sauces; store these in the freezer in
one-cup portions also. Freeze chicken broth/stock in ice cube trays
and transfer them to plastic bags. You can then use them right out
of the freezer like bullion cubes in gravies, soups, sauces,
casseroles, or in the boiling water for rice.
You can substitute rice in casseroles that call for noodles: 1-1/4
cups of rice replaces 8-12 ounces of noodles. Add the rice to the
pan after the spices are added and 1-2 cups of water (depending on
the other liquids used in the recipe). Cover and cook for 20 minutes
on low heat; stir 2-3 times to keep from sticking. Add water and
other liquids as needed.
I also like to bake ahead and freeze pizza shells, hamburger or
sandwich buns, frosted cupcakes, etc. When the mood strikes, or the
need (such as a party) I have GF foods at my fingertips. Along with
the pizza shells I also freeze shredded cheese; it can be applied to
the shells frozen. If you shred the cheese yourself, you will need
to add about a tablespoon of cornstarch to the cheese and shake it up
thoroughly to prevent it from clumping together.
After you've gotten your kitchen organized, you'll need to think
about organizing all those GF recipes you'll be collecting at celiac
meetings and exchanging with other celiac friends. Assemble your
favorite "loose" recipes in one place and categorize them. Separate
the ones you've tried (and liked) from the ones that you have not yet
tried. I try to date them and note where (or whom) I got them from.
There are a number of ways you might try organizing your recipes:
* Place them on index cards and keep them in a card file.
* Place them in a three-ring (loose leaf) binder.
* Use six or eight spiral notebooks, one for each major category.
* Use four or five inexpensive photo albums with clear plastic
covers that pull away; affix the recipes under the plastic
covers.
* Mark the categories on the flaps of an accordion-style pocket
file holder and then insert loose recipes into the appropriate
category pockets.
Whatever system you use, remember to leave lots of room for expansion
and growth! As you read a cookbook, mark the index when you find a
recipe that sounds good and is GF. Mark it with colored ink or a
highlighter so that it's easy to find again.
I like to keep frequently used recipes at my fingertips. I place
these in a magnet with a clip and I keep them on the refrigerator.
When I use one of the recipes, I put it on the top of the stack and
then move the magnet onto my range hood for easy reference.
Whenever I use a recipe, I make notes right on it including the date
I tried it, how I liked it, and what changes I might want to try
making to the recipe the next time I use it.
Try to keep GF staples on hand for an emergency: cornstarch, milk
substitutes, corn cooking oil, GF chocolate bits (I have my own
definition of "staples"), GF flours, GF cereals, GF noodles, and
possible GF box mixes for breads, brownies, muffins, cakes, etc. Set
up a quick cook pantry, selecting the foods your family likes best.
Stock only a few cans of each item. If you don't have room in the
kitchen, try the floor of a closet or a shelf. These stores will
come in handy in weather emergency or perhaps just before payday.
Being diagnosed with celiac sprue doesn't have to turn you and your
kitchen inside out. Being gluten-free is not the end of the world.
I have found it's the beginning of cooking and baking healthier foods
that I would have never tried otherwise. The satisfaction of making
these foods myself has been rewarding beyond measure. Good luck and
get organized!
Tri-County Celiac Sprue Support Group Officials:
------------------------------------------------
Physician Advisor: Thomas Alexander, M.D.
Dietitian Advisor: Dorothy Vaughan, R.D.
President: Jim Lyles
Vice President: Diane Morof
Past President: Kathy Davis
Treasurer: Kathy Wagerson
Secretary: Denise Parsons
Newsletter Editor: Jim Lyles (0002002214@mcimail.com)
Contributing Editor: Judy Hafner (gpyp07a@prodigy.com)
Disclaimer:
-----------
All recommendations, information, dietary suggestions, menus,
shopping guide suggestions, medical updates, miscellaneous articles,
and recipes in this newsletter are intended for the benefit of our
members, readers, and the general public. No liability is assumed by
the Tri-County Celiac Sprue Support Group or any of its members.
Information in the Sprue-nik Press has not been submitted for
approval to the CSA/USA medical board; however it has been approved
by our physician and dietitian advisors. Individuals should consult
with their physicians and dietitians before following any medical or
dietary recommendations in the Sprue-nik Press.
Original material used in the Sprue-nik Press is placed in the public
domain for the benefit of all celiacs. The information is not
copyrighted to facilitate the easy exchange of celiac information.
Feel free to reproduce any portion of this newsletter, unless it
specifically states otherwise. All we ask is that you indicate where
the information came from.
The Sprue-nik Press is published by the Tri-County Celiac Sprue
Support Group (TCCSSG), a local chapter of CSA/USA located in
southeast Michigan. Members receive this newsletter, a shopping
guide, and a new member packet full of articles and useful
information. Mail-in subscriptions are welcome. For subscription
information, send an e-mail note to Jim Lyles, at the e-mail address
listed above.