THE CELIAC FAQ

The Celiac FAQ

July 16, 1998
Version 1.5

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Disclaimer
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This FAQ has been designed to be a general information resource. It
is not intended for use in diagnosis, treatment, or any other medical
application. Questions should be directed to your personal
physician. This is no warranty on this information and no liability
is assumed by the author or any group for the recommendations,
information, dietary suggestions, menus, and recipes promulgated.
Products mentioned or omitted do not constitute endorsement.

This discussion list is international in scope. Keep in mind that
products and procedures often differ between countries. In future
updates, some of these differences may be highlighted.

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The Celiac Listserv
-------------------
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in New York, USA. To subscribe to the Celiac List, send an Internet
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"SUBSCRIBE CELIAC yourfirstname yourlastname" in the body of the message
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--== TABLE OF CONTENTS ==--
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o What is celiac disease?
o What is dermatitis herpetiformis? What does it have to do with
celiac disease?
o What are the effects of celiac disease?
o How is celiac disease diagnosed?
o What are the symptoms of celiac disease?
o What is the treatment for celiac disease?
o What is gluten? What is gliadin?
o Which grains are safe, which are not?
o Is all this stuff certified to be safe?
o This sounds like a complex diet. How do I get started?
o What items on ingredients lists should I avoid?
o What is available to help me cope with this new diet?
o Where can I find a support group?
o What are some good sources of gluten-free products?
o What's the best bread machine for the celiac's use?
o What cookbooks are available, and how do I get one?
o I've been on a gluten-free diet and have still not improved.
(Or, I was feeling well, but the symptoms are back.)
What am I doing wrong?
o I'm feeling better (or I never had obvious symptoms).
How can I tell if I'm gluten-free?
o After years of having diarrhea, now I'm constipated. Help!
o How can I survive restaurants, parties, travel and entertaining?
o Which alcoholic beverages are safe?
o Is celiac disease ever mistaken for other diseases?
o Are there other diseases related to celiac disease?
o How can I get more information?

-----------------------
What is celiac disease?
-----------------------
Celiac disease (also called coeliac, nontropical sprue, celiac sprue,
gluten intolerant enteropathy, or gluten sensitive enteropathy) is a
condition in which there is a chronic reaction to certain protein
chains, commonly referred to as glutens, found in some cereal grains.
This reaction causes destruction of the villi in the small intestine,
with resulting malabsorption of nutrients.

There is clear evidence of a family tendency toward celiac disease.
5-10% of the first-level relatives (parents, children, and celiacs)
of diagnosed celiacs may develop celiac disease. The disease affects
both sexes, and it can begin at any age, from infancy (as soon as
cereal grains are introduced) to later life (even though the
individual has consumed cereal grains all along). The onset of the
disease seems to require two components: genetic predisposition (two
specific genetic markers, called HLA subfactors, are present in well
over 90% of all celiacs in America), and some kind of trigger. The
trigger may be environmental (as in overexposure to wheat),
situational (perhaps severe emotional stress), physical (such as a
pregnancy, an operation), or pathological (a viral infection).

Once thought to be a childhood disease that would be outgrown, recent
evidence indicates that it is not uncommon for the symptoms of celiac
disease to disappear during late childhood or adolescence, giving the
appearance of a cure. Unfortunately, damage still occurs during
these years of apparent health, and later in life these celiacs may
find they have suffered considerable damage to the small intestine,
and have for years deprived themselves of important nutrients.

---------------------------------------
What is dermatitis herpetiformis? What
does it have to do with celiac disease?
---------------------------------------
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 and then are usually scratched off. DH can occur in only
one spot, but more often appears in several areas.

The condition is related to IgA deposits under the skin. These occur
as a result of ingesting gluten. These deposits take a long time to
clear up, even when the patient is on a gluten-free diet.

While most individuals with DH do not have obvious GI symptoms,
almost all have some damage in their intestine. They have the
potential for all of the nutritional complications of celiac disease.
It is believed by some GI professionals that most DH patients do
indeed have celiac disease.

It is unusual to develop DH after a celiac patient starts a
gluten-free diet. About 5% of celiac patients will develop DH,
either before being diagnosed or within the first year on the diet.
The fact that DH can develop even after starting the diet is probably
due to the long lasting nature of the IgA deposits.

---------------------------------------
What are the effects of celiac disease?
---------------------------------------
Untreated celiac disease can be life-threatening.

Celiacs are more likely to be afflicted with problems relating to
malabsorption, including osteoporosis, tooth enamel defects, central
and peripheral nervous system disease, pancreatic disease, internal
hemorrhaging, organ disorders (gall bladder, liver, and spleen), and
gynecological disorders (like amenorrhea and spontaneous abortions).
Fertility may also be affected. Some researchers are convinced that
gluten intolerance, whether or not it results in full-blown celiac
disease, can impact mental functioning in some individuals and cause
or aggravate autism, Asperger's syndrome, attention deficit disorder
(ADD), and schizophrenia. Some of the damage may be healed or
partially repaired after time on a gluten-free diet (for example,
problems with infertility may be reversed).

Celiacs who do not maintain a gluten-free diet also stand a much
greater chance of getting certain types of cancer, especially
intestinal lymphoma.

Untreated celiac disease can cause temporary lactose intolerance.
Lactose is a sugar found in dairy products. To be digested it must
be broken down by an enzyme called lactase. Lactase is produced on
the tips of the villi in the small intestine. Since gluten damages
the villi, it is common for untreated celiacs to have problems with
milk and milk products. (Yogurt and cheese are less problematic
since the cultures in them break down the lactose). A gluten-free
diet will usually eliminate lactose intolerance. However, a number of
adults (both celiacs and non-celiacs) are lactose intolerant even
with a healthy small intestine; in that case a gluten-free diet will
not elminate lactose intolerance.

Celiacs often suffer from other food sensitivities. These may
respond to a gluten-free diet--or they may not. Soy and MSG are
examples of food products that many celiacs have trouble with.
However, it should be noted that these other sensitivities, while
troublesome, do not damage the villi. As far as we know, only gluten
causes this damage.

--------------------------------
How is celiac disease diagnosed?
--------------------------------
The traditional approach to diagnosing celiac disease is a three-step
process:

1. Perform a biopsy of the lining of the small intestine. This is
a surprisingly easy procedure which takes only a few minutes,
although small children are usually sedated first, which adds to
the cost and complexity of the biopsy. If the villi are damaged
(flattened or atrophied mucosa), go to step 2.

2. Place the patient on a gluten-free diet for six months or longer
and then perform another biopsy. If the villi are healed, go to
step 3.

3. Put gluten back in the diet for six months or longer, and then
perform a third biopsy. If the villi are again damaged, then
the diagnosis is complete. At this point, the patient goes on a
gluten-free diet for life.

Many doctors now feel that step number three is unnecessary, and some
feel that even the second biopsy may be unnecessary. Part of the
reason for this change in thinking is the development of three useful
antibody blood tests: endomysial, reticulin (IgA), and gliadin (IgG
and IgA). If the patient has been eating gluten regularly and all
three tests come back positive, there is a very high chance that the
patient has celiac disease. If all three tests come back negative,
then it is very likely that the patient does not have celiac disease.
Mixed results, which often occur, are inconclusive.

All of the laboratory tests that can be performed are strongly
affected by a gluten-free diet. Tests will return negatives if the
individual has been on a gluten-free diet for some time, and there is
much debate about the length of time a patient must return to a
gluten-laden diet before being tested. It probably depends on many
factors: the level of damage that was done before starting a
gluten-free diet, the length of time the person has been gluten-free,
the amount of healing that has occurred, and the sensitivity of the
individual to gluten.

A tentative diagnosis of celiac sprue is usually offered if the
patient's symptoms clear up after some time on a gluten-free diet.
This is often followed by a "challenge" in which one of the offending
grains (usually wheat) is eaten to see if the symptoms reoccur.
However, this approach is much less desirable than having a firm
diagnosis from a combination of antibody tests and one or more
biopsies.

Because a gluten-free diet precludes accurate testing, if you suspect
celiac disease, it is advisable to have diagnostic tests performed
before starting a gluten-free diet.

Some physicians will accept positive antibody tests, one biopsy, and
improvement on a gluten-free diet as sufficient for diagnosing celiac
disease. Many other doctors prefer to perform a second biopsy,
feeling that if it shows normal villi after a period of eating
gluten-free then the diagnosis is confirmed. There are still some
doctors who prefer the three-step approach mentioned above, though
most view this as unnecessary.

----------------------------------------
What are the symptoms of celiac disease?
----------------------------------------
There is no typical celiac. Individuals range from having no
symptoms (asymptomatic or "latent" forms of the disease) to extreme
cases where patients present to their physicians with gas, bloating,
diarrhea, and weight loss due to malabsorption.

In between these two extremes lie a wide variety of symptoms that
include:

o diarrhea
o constipation
o steatorrhea (fatty stools that float rather than sink)
o abdominal pain
o excessive gas
o any problem associated with vitamin deficiencies
+ iron deficiency (anemia)
+ chronic fatigue
+ weakness
+ weight loss
+ bone pain
+ easily fractured bones
+ abnormal or impaired skin sensation (paresthesia),
including burning, prickling, itching or tingling
+ edema

Individuals have reported such varied symptoms as:
o white flecks on the fingernails
o fuzzy-mindedness after gluten ingestion
o burning sensations in the throat

In children, the symptoms may include:
o failure to thrive
o paleness
o querulousness, irritability
o inability to concentrate
o wasted buttocks
o pot belly with or without painful bloating
o pale, malodorous, bulky stools
o frequent, foamy diarrhea

In addition to all of these, dermatitis herpetiformis, a disease in
which severe rashes appear (often on the head, elbows, knees and
buttocks) is related to celiac disease.

Reactions to ingestion of gluten can be immediate, or delayed for
weeks or even months.

The amazing thing about celiac disease is that no two individuals who
have it seem to have the same set of symptoms or reactions. A person
might have several of the symptoms listed above, a few of them, one,
or none. There are even cases in which obesity turned out to be a
symptom of celiac disease.

-----------------------------------------
What is the treatment for celiac disease?
-----------------------------------------
There is no prescriptive drug celiacs can take to effect a cure. In
fact, there is no cure, though there is every opportunity for celiacs
to lead normal, healthy lives by following a diet that contains no
gluten. This means avoiding all products derived from wheat, rye,
barley, oats, and a few other lesser-known grains.

Extra vitamins may be taken, if necessary, but the only way for a
celiac to avoid damage to their intestinal villi and the associated
symptoms, is by maintaining a gluten-free diet.

---------------------------------
What is gluten? What is gliadin?
---------------------------------
Traditionally, gluten is defined as a cohesive, elastic protein that
is left behind after starch is washed away from a wheat flour dough.
Only wheat is considered to have true gluten. Gluten is actually
made up of many different proteins.

There are two main groups of proteins in gluten, called the gliadins
and the glutenins. Upon digestion, the gluten proteins break down
into smaller units, called peptides (also, polypeptides or peptide
chains) that are made up of strings of amino acids--almost like beads
on a string. The parent proteins have polypeptide chains that
include hundreds of amino acids. One particular peptide has been
shown to be harmful to celiac patients when instilled directly into
the small intestine of several patients. This peptide includes 19
amino acids strung together in a specific sequence. Although the
likelihood that this particular peptide is harmful is strong, other
peptides may be harmful, as well, including some derived from the
glutenin fraction.

It is certain that there are polypeptide chains in rye and barley
proteins that are similar to the ones found in wheat. Oat proteins
have similar, but slightly different polypeptide chains and may or
may not be harmful to celiac patients. There is scientific evidence
supporting both possibilities.

When celiac patients talk about "gluten-free" or a "gluten-free
diet" they are actually talking about food or a diet free of the
harmful peptides from wheat, rye, barley, and (possibly) oats. This
means eliminating virtually all foods made from these grains (e. g.,
food starch when it is prepared from wheat, and malt when it comes
from barley) regardless of whether these foods contain gluten in the
very strict sense. Thus, "gluten-free" has become shorthand for
"foods that don't harm celiacs."

In recent years, especially among non-celiacs, the term gluten has
been stretched to include corn proteins (corn gluten) -- and there is
a glutinous rice, although in the latter case, glutinous refers to
the stickiness of the rice rather than to its containing gluten. As
far as we know, neither corn nor glutinous rice cause any harm to
celiacs.

-------------------------------------
Which grains are safe, which are not?
-------------------------------------
The common list of forbidden grains is: wheat, rye, barley and oats.

Unfortunately, there are variants out there that go by other names.
Durum and semolina are names for certain kinds of wheat that have
been bred for specific uses. Both spelt and kamut are versions of
wheat. (Other names for these: spelta, Polish wheat, einkorn and
small spelt). Bulgur is wheat that's been specially processed.
Triticale, a grain crossbred from wheat and rye, is definitely on the
toxic list.

Though corn (maize) is one of those grains that many people -- not
just celiacs -- may be allergic to, it is not a grain that is thought
to cause damage to the villi in celiacs. It is tolerated by most
celiacs.

Of the common grains, rice is the favorite as it rarely troubles
anyone.

Aside from corn and rice, there is a wide variety of other grains
that are used in gluten-free cooking. We even use beans and peas
(legumes, pulses).

The following can be milled into flour: amaranth*, buckwheat* (or
kasha), chickpeas (garbanzos), Job's tears (Hato Mugi, Juno's Tears,
River Grain), lentils, millet*, peas, quinoa*, ragi, sorghum, soy,
tapioca, teff*, and wild rice. Many of these flours are available in
health food stores. Some (like rice flour) may be available in
grocery stores. (The products marked with an "*" are listed as
grains to avoid by some physicians and celiac societies. See the
discussion below about anectodal evidence and possible contamination
of flours for more information.)

To improve the texture of gluten-free baked goods, most cooks use
one or more of the following: xanthan gum, guar gum (though
this sometimes has a laxative effect), methylcellulose, or a new
product called Clear Gel. These can be obtained either through
health food stores, specialty cook's stores, or some of the mail
order sources listed below.

Oils popular in cooking include: corn, peanut, olive, rapeseed
(canola), safflower, soy, and sunflower.

---------------------------------------
Is all this stuff certified to be safe?
---------------------------------------
No. Celiac sprue is not a well-researched disease. Most of what we
know about foods that are safe and foods that are not is gathered
from anecdotal evidence provided by celiacs themselves. There is a
great deal of controversy about what affects celiacs and what
doesn't.

Take, for example, buckwheat. Along with corn and rice, this is one
of only three common grains left on the "safe" list for celiacs.
However, some celiac societies have put it on the "unsafe" list and
there is anecdotal evidence that some individuals react to it as they
do to wheat. Yet a well-known specialist in grain research points
out that buckwheat is more closely related to rhubarb than to the
toxic grains, so if buckwheat is unsafe then any plant might be
unsafe.

In considering anecdotal evidence for whether a food is safe or not,
individuals must make their own choices, but each of us should
clearly understand that anecdotal evidence is gathered from
individuals with widely varied experience.

It could be that the "buckwheat flour" that a celiac reacted to was
actually one of those mixes that combines buckwheat flour with wheat
flour. Another possibility is that, since buckwheat and wheat are
often grown in the same fields in alternating years, the "pure
buckwheat flour" may have been contaminated from the start by wheat
grains gathered at harvest. Yet another explanation might be that
the buckwheat was milled in a run that was preceded by wheat or any
of the other toxic grains, so the flour was contaminated at the mill.
Finally, some individuals -- celiacs or not -- may have celiac-like
reactions to buckwheat; they are allergic. Celiacs who are allergic
to buckwheat may be easily fooled into believing they are having a
gluten reaction. Or, it could be that some evolutionary trick has
put a toxic peptide chain into buckwheat despite its distant relation
to the other grains, but the odds against this happening are long.

As individual celiacs learn to live gluten-free, they must gauge
their own reactions to foods, do lots of research, ask questions, and
try to understand the many variables that may affect the ingredients
in their food.

------------------------------------------------------
This sounds like a complex diet. How do I get started?
------------------------------------------------------
Learning the celiac diet is a lot like learning to drive a car. At
first there's so much to look out for, so many things to remember,
that you feel a bit overwhelmed and, perhaps, as though you'll never
get the hang of it. But just like driving a car, with practice it
gets easier and easier until it become almost automatic. (And, like
driving a car, you should never allow yourself to become too
complacent, because it's when you start taking everything for granted
that accidents happen.)

The best way to start the diet is begin with items that have no
ingredients list: whole foods. Cook your own meats, make omelettes,
have potatoes, eat fruit and vegetables, drink 100% juice drinks and
water. This allows you to be sure that everything you are ingesting
is gluten free by concentrating on things other than bread and pasta
substitutes. If you're taking medications, check on those.

When you begin feeling better, start adding in your favorite prepared
foods, and buying substitutes for things that are gluten-laden, or
making your own. Take it slowly so that you don't feel overwhelmed
and can pay attention to each item you add to your safe-list.

-----------------------------------------------
What items on ingredients lists should I avoid?
-----------------------------------------------
Following is a list of things that are considered unsafe for obvious
reasons; they all contain one of the forbidden grains as a standard
ingredient (though even on this list there are exceptions, like
gluten-free bread and some macaroon cookies which may be made without
wheat flour):

o bagels
o barley
o beer
o biscuits
o bran
o bread
o bulgur
o cake
o cake meal
o cookies
o couscous
o crackers
o croutons
o cupcakes
o doughnuts
o durum
o flour
o french toast
o gliadin
o gluten
o graham flour
o graham crackers
o kamut
o macaroni
o malt
o malt flavoring
o malted milk
o malt vinegar
o matzo meal
o muesli
o muffins
o noodles
o oats or oatmeal
o oat bran
o pancakes
o pasta
o pastry
o pie
o pretzel
o rolled oats
o rye
o semolina
o spaghetti
o spelt
o toast
o triticale
o waffles
o wheat
o wheat germ
o wheat starch
o whole wheat

Be very sure to read all labels. Such common prepared food as
cereals, ice cream, soups, yogurt, snack foods and processed meats
(like lunch meats and sausages) may contain any of the above
ingredients.

Seemingly innocent ingredients like "tomato paste" are suspect, too,because ingredients of ingredients are not required to be broken
down. Some tomato paste may contain HVP, but when you see "tomato
paste" in that jar of spaghetti sauce, it may be safe, or it may not.
(Also check any cans of tomato paste you buy; if it says "100%
tomatoes" it should be safe, but, surprisingly, many contain other
ingredients).

It is a good idea to recheck labels at regular intervals.
Ingredients may change at any time. For example, at one time
Pringles Potato Chips were gluten-free. However, in the past year
the ingredients changed to include wheat starch. Also, in some
products the ingredients may vary from one batch to another. For
example, Archway macaroons are sometimes made with potato starch, and
sometimes with wheat starch. So, depending on which package you
happen to buy, they may or may not be gluten free.

Any of the following may have wheat, rye, barley or oats as an
ingredient. On some items wheat flour may be what we call a "hidden
ingredient" This could be because conveyor belts are dusted with
wheat flour, or wheat flour is mixed in to aid in pouring finely
ground spices ("anti-caking agents"). (Food manufacturers are not
required to list items used in "packaging" so be careful.) "Nebulous
ingredients" are those with catchall names (like "modified food
starch") that can be manufactured from a variety of sources, some of
which are toxic, some of which are not.

Look at the ingredients list and check with the manufacturer:

o annatto color
o barbecue sauce
o binders
o bouillon
o burrito (if wheat tortilla)
o butter-scotch
o candy
o caramel color
o catsup
o cereal
o cheese (annatto color; molds may be introduced on bread crumbs)
o chewing gum (flour as ingredient or may be dusted with it)
o chocolate
o cottage cheese (may contain food starches)
o curry powder (may have flour as a hidden ingredient to improve
flow)
o emulsifiers
o excipients
o farina
o fillers
o food starch
o french fries (contamination from cooking oil; vinegar retains
color)
o frozen yogurt
o gluten (corn gluten is not toxic)
o granola
o gum (may be oat gum)
o hydrolyzed plant protein (HPP)
o hydrolyzed vegetable protein (HVP) (if source not identified)
o ice cream
o ice milk
o leavening
o licorice candy (usually has wheat)
o maltodextrins (may be made with forbidden grains)
o mayonnaise
o modified food starch (could be corn, could be wheat)
o mono & diglycerides (may use a wheat derived carrier)
o MSG (may be made from wheat outside U.S.)
o mustard (wheat flour may be a hidden ingredient)
o natural flavor (this can be anything; there is no disclosure
requirement)
o nonalcoholic beer
o rice syrup (may use barley enzymes)
o seasoning
o sherbet
o shortening (vitamin E from wheat germ may be added)
o soup
o sour cream (may contain food starches)
o soy sauce (wheat used in most brands)
o spices (may have flour to improve flow)
o stabilizers
o starch*
o tamari (most okay, check ingredients)
o textured vegetable protein (TVP)
o tomato paste
o tortillas
o tostada
o vegetable gum (may be made from forbidden grains)
o vegetable shortening (may be made from forbidden grains)
o white pepper
o yeast (may be grown or dried on wheat flour)
o yeast extract
o yogurt

* In the U.S. "starch" is safe as it should always be corn starch;
in other countries it may be wheat starch. "Food starch" and
"modified food starch" may be either corn or wheat, in the U.S. and
elsewhere.

The following is a list of ingredients which some celiacs believe are
harmful, others feel are safe:

o alcohol
o grain alcohol
o grain vinegars
o white vinegar
o vanilla extract and other flavorings (may contain alcohol)
o amaranth
o millet
o buckwheat
o quinoa
o teff

Wheat starch is used in the some countries' GF diet because of the
belief that it contains only a trace or no gluten and that good baked
products cannot be made without it. In a laboratory, wheat starch
purity can be easily controlled, but in most plants this is not
always the case. Wheat starch is not considered safe for celiacs in
these countries: United States, Canada, Italy.

Please keep in mind that we make no promises that these lists are
complete.

The CSA/USA (see address under support groups, below) sells a
shopping guide for $5.00 (even to non-members) that is a many-paged
booklet with some excellent explanations of why things might be
suspect. It is a good resource, though there are some errors in the
food lists. (Many of the listed cereals are not gluten-free, for
instance.)

-----------------------------------------------------
What is available to help me cope with this new diet?
-----------------------------------------------------
There are many resources available to the newly diagnosed celiac.
These include cook books, mail order sources and support groups.

One of the most common early purchases for celiacs is a bread
machine, since bread is usually the first prepared food to be missed.
The new breed of machines makes turning out bread very simple, and
there are good recipes available, as well as some excellent
gluten-free bread mixes. Before purchasing a bread machine, ask
questions about it's suitability for preparing GF breads and the
availability of GF bread recipes. Some machines are excellent
and perform error free, while others will not bake a GF loaf or
require manual intervention.

A heavy duty mixer is often required for handling the GF flours.
Depending on your cooking style, it may be an item to consider after
preparing several GF baked items.

Other kitchen equipment that comes in handy: a bread slicer, a big
freezer, a grain mill, a pasta machine, even an ice cream maker or
yogurt maker.

---------------------------------
Where can I find a support group?
---------------------------------
Write or call one of the following and ask for information on local
support groups and the benefits of national membership:

American Celiac Society (ACS)
E-Mail: bentleac@umdnj.edu
58 Musano Court
West orange, NJ 07054
973/325-8837

Canadian Celiac Society
190 Britannia Rd. E. Unit #11
Mississauga, ON L4Z 1W6
(800) 363-7296 (inside Canada only)
(905) 507-6208, (905) 507-4673 (fax)
WWW: http://www.celiac.ca

Celiac Disease Foundation (Los Angeles)
13251 Ventura Boulevard, Suite 3
Studio City, CA 91604
818/990-2354
E-Mail: cdf@primenet.com

Celiac Sprue Association/USA (CSA/USA)
PO Box 31700
Omaha, NE 68131
402/558-0600
E-Mail: celiacs@csaceliacs.org, WWW: http://csaceliacs.org

Gluten Intolerance Group of North America (GIG)
PO Box 23053
Seattle, WA 98102
206/325-6980
E-Mail: gig@accessone.com

A listing of International Support Groups can be found in the NEWCEL
PACKAGE that is available from this LISTSERV. For more information,
see the section entitled, "How can I get more information?"

---------------------------------------------------
What are some good sources of gluten-free products?
---------------------------------------------------
Try any of the following -- or all of them! Have them send a catalog
or list, and check it out for yourself! Keep in mind that many of
these companies sell products that are not gluten-free as well as
products that are gluten-free.

o Authentic Foods, 1850 W. 169th St. Suite B, Gardena, CA 90247
310/366-7612
(bean flour based mixes; flours)

o David's Goodbatter, 717/872-0652
(bread, cake and cookie mixes, chocolate cake mix!)

o Dietary Specialties, PO Box 227, Rochester, NY 14601
800/544-0099
(pancake mixes, pasta)

o El Peto Products, 2-41 Shoemaker St., Kitchener, ON N2E 3G9,
In Canada: 800/387-4064 Outside Canada: 519/748-5211.
(bread mix, raisin bread, pancake mix, pie dough, pizza shells,
hamburger buns)

o Ener-G Foods, Inc., PO Box 84487, Seattle WA 98124-5787
800/331-5222.
(flours -- in bulk, too; xanthan gum, goodies)

o G&I Kosher Bakery, 76-10 Main St., Flushing, NY 11367
718/261-1157.

o The Gluten-Free Pantry, PO Box 881, Glastonburry, CT 06033
203/633-3826.
(mixes for breads, cookies and pancakes, cakes, even bagels)

o King Arthur Flour, RR 2, Box 56, Norwich, VT 05055,
800/827-6836.
(flours, xanthan gum, bread machines and mills)

o Kinnikinnick, In Canada: 800/633-9551. Outside Canada:
403/433-4023
(tarts, pizza crusts, hotdog & hamburger buns, pizza pockets,
flours, pastas)

o Miss Roben's Dietary Foods, PO Box 1434, Frederick, MD 21702
800/891-0083
(bread, muffin, cookie, cake, pancake, biscuit, & other mixes)

o Natural Feast Corp., 800/748-2772
(gourmet pies)

o Pamela's Products, Inc. 415/952-4546.
(Mixes for pancakes, cookies)

o The Really Great Food Co., 516/593-5587
(pancake, gingerbread, cornbread, pizza crust etc.)

o Sterks Bakery, 800/608-4501 (open Wed., Thu., Fri., & Sat.)
(flours, mixes, breads, muffins, cakes)

A more complete listing of GF vendors can be found in the NEWCEL
PACKAGE that is available from this LISTSERV. For more information,
see the section entitled, "How can I get more information?"

---------------------------------------------------
What's the best bread machine for the celiac's use?
---------------------------------------------------
Most bread machines can be made to work; it's simply a
matter of getting to know your machine and trying it out. Features
that are recommended for gluten-free breads are: programmability, a
strong paddle, and a cool-down cycle.

The Welbilt ABM-100 was the old standby, but it is no longer being
manufactured. Welbilt stands by all their models as being suitable
for gluten-free breadmaking, however, the ABM 150-R and the 2200T
seem to have more of the preferred features. Also the Sears model
69623 is made by Welbilt, and is equivalent to the ABM 150-R.

Some of the bread machines currently being sold by Sears as their own
brand are actually made by Welbilt. The larger model is recommended
(the one with the clear dome) since most of the recipes are for
larger loaves of bread.

Another popular make (but expensive, the Cadillac of bread machines)
is the Zojirushi BBCCS-15. It is extremely versatile and
programmable.

Another model that subscribers to the list own and are pleased with
is the Black & Decker All-in-One (Model B1500-04).

---------------------------------------------------
What cookbooks are available, and how do I get one?
---------------------------------------------------

o The Gluten-Free Gourmet, by Bette Hagman (wide range: breads,
cookies, pasta, with an emphasis on fancy stuff).

o More from The Gluten-Free Gourmet, by Bette Hagman (an
excellent section on bread machines and recipes for them, and
more wide ranging recipes)

You might want to look in your local library first. They probably
have at least a few good books there, and you can get an idea of
which you'll like best. (Don't forget inter-library loans, too, if
your branch does not carry the ones you want.)

To buy these cookbooks, try checking your local bookstore's "special
diet" section of the cookbook shelves; you may be surprised to find
copies there. Also, check health food stores. Many can be ordered
through your local bookstore if you can't find them already on the
shelf. Finally, many of the mail-order sources for celiacs also sell
cookbooks.

Several of the celiac support organizations listed earlier have
cookbooks. Also, some of the larger local support groups have
cookbooks they have compiled.

-----------------------------------------------
I've been on a gluten-free diet and have still
not improved. (Or, I was feeling well, but
the symptoms are back.) What am I doing wrong?
-----------------------------------------------
Many newly diagnosed celiacs are told that the diet is simple: just
remove wheat, barley, rye and oats. Well, it sounds easy, doesn't
it? If those who hand us this advice haven't tried it themselves,
they are unlikely to realize how prevalent these things are in the
modern diet. Some physicians may not be aware that, not only does
gluten hide in the ingredients list of many products under the
obscure names listed previously, it may even be a component of some
of the drugs they prescribe.

It is up to celiacs themselves to research everything that goes into
their mouths.

Don't get complacent, either. If you're not feeling well, or if you
were feeling well but suddenly find symptoms recurring, recheck
labels. Food manufacturers often change their ingredients, and they
are not required to put BIG ANNOUNCEMENTS on the can to let you know
they've suddenly started including gluten in a product you've grown
to trust.

There are many ways that celiacs commonly get gluten -- some seem
obvious (once they've been pointed out!), others are pretty obscure.

Check the following:
o your butter: does it have breadcrumbs from wheat bread?
o your toaster: the tines may be contaminated
o your kitchen counter
o your bread board
o cosmetics, lipstick, chapstick
o do you lick stamps or envelopes?

Also be aware that you may get gluten in:
o medicines, both prescriptions and over the counter
o fried restaurant foods -- for example, french fries are often
cooked in the same oil as breaded foods. (Note: In the USA
McDonald's french fries may not be safe because they are
often cooked in the same oil as their has browns, which have
wheat flour as a significant ingredient.)
o grilled restaurant food -- your allegedly gluten-free chicken
breast may have been grilled in the same spot as a grilled
cheese sandwich.

If you've done everything you can and still are having symptoms,
check with your doctor. The IgA reticulin antibody test can be used
to check for reactions to gluten ingestion. If the test comes back
negative, it indicates that you are probably not ingesting gluten any
more, and the physician should check for other problems that may be
causing your continuing illness.

Another possibility is that the disease has entered what's called the
refractory phase, in which problems with malabsorption continue
despite strict adherence to a gluten-free diet. (Note: This is very
unusual; an unsuspected source of gluten is much more likely to be
the problem.) With your doctor's advice you might consider enzyme
supplements which would help with digestion, or check for pancreatic
problems, or lymphoma bacterial overgrowth.

Also consider the possibility that you may have other food
intolerances. Remember that lactose intolerance is very common among
all people. Other foods may also cause problems -- eggs, soy, and
corn have a high incidence of problems -- so watch your diet and try
to determine whether your reaction is tied to a specific food or
ingredient. (Keeping a dietary log -- writing down everything you
eat and when symptoms occur -- is a good first step in looking for
problems with other foods.)

----------------------------------------------
I'm feeling better (or I never had obvious
symptoms). How can I tell if I'm gluten-free?
----------------------------------------------
One of the antibody blood tests can be used to check on how well you
are sticking to a gluten-free diet. Because the IgA antibodies drop
off quickly when a gluten-free diet is maintained, this test can be
used to look for reactions to gluten.

-----------------------------------------------------------
After years of having diarrhea, now I'm constipated. Help!
-----------------------------------------------------------
Cook with whole grains whenever possible. Use brown rice. Put brown
rice flour or rice polish in breads, cookies, pancakes, etc. Or,
use guar gum in your baked products for its natural laxative
effect. Eat lots of pears and other fibrous fruits and vegetables.
Drink V-8 juice! Drink lots of liquids. Exercise! If the situation
is dire, prunes in moderation will help.

----------------------------------------------------------------
How can I survive restaurants, parties, travel and entertaining?
----------------------------------------------------------------
There are several strategies for social survival in a wheat drenched
world.

In restaurants, your main strategy should be to explain the situation
to your server. Don't be shy, many people do it. Just be polite and
you may find your server and even the chef will be interested enough
to ask questions. (After all, food service is their business.) Ask
for help in determining what is safe.

Some of the celiac societies (CSA/USA, GIG, and the Canadian Celiac
Association) offer a "diner's card" that you can hand to your server;
it will help explain the limitations of the celiac diet. GIG's card
is available in multiple languages.

Certain members of our list have also been known to bring their own
pizza to their local pizzeria and have them add toppings and cook the
gluten-free pizza right there, to be enjoyed with non-celiac friends.
Just be sure it isn't going into the same spot in the oven as the
regular pizzas!

Don't forget your local celiac support group -- they should be able
to provide you with names of restaurants in your area that have safe
food and many have probably already been introduced to the celiac
diet by other celiacs. (Imagine: you're provided with the chef's
name. You get to go to the restaurant and ask for the chef BY NAME;
won't that impress your friends?)

Don't let a gluten-free diet limit your vacation fun. Some of the
celiac societies sponsor gluten-free cruises which have been enjoyed
by many. Making arrangements in advance (and in writing) with
providers is also a good idea. You can bring your own bread --
frozen -- and have it brought out at meals. Also, you can bring your
own snacks.

A similar strategy can be used when going to parties. If you don't
mind the party-giver knowing of your condition (and most of us feel
that the more people who are informed about it, the better off the
celiac population will be), just discuss your diet in advance. Bette
Hagman, in one of her recipe books, suggests that meringues are a
safe, gluten-free desert fancy enough for any dinner and recipes can
be found in most cookbooks.

Alternate plans include bringing your own, or eating a filling meal
before the party and then limiting yourself to what you know is safe.

If you are the one doing the entertaining, you could, of course,
provide foods you cannot eat. On the other hand, why not let them
eat gluten-free cake? Cook the foods you like best. A good strategy
is to make, from among your favorites, foods that are unusual
(instead of substitutes for gluten foods like bread or pasta), foods
that you generally don't see at parties. That way, your guests won't
have preconceived notions of how the food should taste.

-----------------------------------
Which alcoholic beverages are safe?
-----------------------------------
Wine, rum, tequila, and sake are usually safe as their alcohols do
not generally come from toxic grains. Some vodkas are also okay.
However, as with any other ingested product, you should gauge your
reaction and learn as much about your favored brands as possible.
Grain alcohols are one of those controversial items. While the
distillation process should leave no room for glutens to wind up in
the end product, many celiacs do report problems with ingestion.
(One theory is that some of the original "mash" may be added back in
at the end of the process for flavor. This is worth researching with
the manufacturer of your favorite product.)

Many liquors are made with grain alcohol and so may be suspect.
Whiskey, bourbon, gin and rye are definitely off the list, since they
are made with rye and barley. Beer, too, must be avoided, since malt
(usually from barley) is an ingredient. Even rice beers use malt.

---------------------------------------------------
Is celiac disease ever mistaken for other diseases?
---------------------------------------------------
Two malabsorption syndromes that are similar to celiac disease are
Whipple's disease and giardia. Neither of these responds to a
gluten-free diet, however, and each has tests that can be performed
that are specific to those diseases.

Young women with a history of low body weight despite high calorie
diets are sometimes misdiagnosed as having an "eating behavior
disorder" like bulimia or anorexia nervosa.

Because intestinal complaints may vary widely even in one individual
-- who may suffer from alternating constipation and diarrhea, as well
as excessive gas and abdominal pain -- "irritable bowel syndrome" is
another common misdiagnosis.

Because the symptoms of celiac disease are so varied, and can be
different from one individual to the next, they can easily be
mistaken for other diseases. This is why it is often called "The
Great Mimic."

---------------------------------------------------
Are there other diseases related to celiac disease?
---------------------------------------------------
Among celiacs and their relatives, there appears to be a higher
incidence of other disorders related to the immune system. A
partial listing of these includes insulin dependent diabetes mellitus
(type I), Graves' disease, Addison's disease, scleroderma, chronic
active hepatitis, myasthenia gravis, systemic lupus erythematosus,
and Sjogren's syndrome.

In addition, a gluten-free diet appears to have helped some
individuals with autism, chronic fatigue syndrome (myalgic
encephalomyelitis or ME, PVS, post viral fatigue syndrome or PVFS),
attention deficit disorder (ADD), and ADHD; though it is by no means
a cure for any of these.

-------------------------------
How can I get more information?
-------------------------------
The national support groups listed previously offer new celiac
packets and frequent newsletters. Local support groups hold regular
meetings and provide a chance for you to interact with other celiacs.
Many local support groups offer newsletters, cookbooks, and other
information.

Past posts to the Celiac List are kept in monthly archives, starting
with November, 1994. To get copies of past posts to the Celiac List,
address an Internet email message to:

LISTSERV@MAELSTROM.STJOHNS.EDU

You can ignore the subject line (it won't have any affect). Enter
the following as the text of your message:

GET CELIAC LOGyymm

where "yy" is the two-digit year, and "mm" is the two-digit month.
You can get more than one month's worth of postings by specifying
several "GET" commands, one per line. For example, to get the
postings for the Celiac list's first three months, you would send
this message to LISTSERV@MAELSTROM.STJOHNS.EDU

GET CELIAC LOG9411
GET CELIAC LOG9412
GET CELIAC LOG9501

These are rather large files, ranging from 250-600K in size (or
80-200 pages of printed text). Depending on the storage restrictions
of your system, you may want to only "GET" one at a time. They come
across as ASCII text.

You can then use your favorite word processor to do searches for key
words of subjects that interest you, or read them completely . . .
you'll learn a lot!

You can also get a collection of fact sheets to supply more detailed
discussions about these and other commonly asked questions. This is
called the NEWCEL PACKAGE. Included in this package are: a list of
support groups, a larger list of GF vendors, GF diet instructions,
and many other items of interest.

* SUMMARY CD information guide
* GFDIET Dietary info for the GF diet
* COOKBOOK Cookbooks
* VENDORS Sources of GF products
* INCIDENC Familial incidence of CD
* GRAINS Grain toxicity
* DIAG-TST Diagnostics tests for CD
* MEDCARE Initial Assessment and Follow-up Care
* SPECTRUM The Widening Spectrum of Celiac Disease

To get this package, send this message to LISTSERV@MAELSTROM.STJOHNS.EDU
GET CELIAC SUMMARY
GET CELIAC GFDIET
GET CELIAC COOKBOOK
GET CELIAC VENDORS
GET CELIAC INCIDENC
GET CELIAC GRAINS
GET CELIAC DIAG-TST
GET CELIAC MEDCARE
GET CELIAC SPECTRUM
// EOJ

----------------------------------
Thanks for work on this FAQ go to:
----------------------------------
Linda Blanchard, Dave Bridges, Bill Elkus, Mike Jones, Don Kasarda,
Jim Lyles, Becky Markle, Peter Thomson, Joe and Mary Alice Warren,
Don Wiss and all the members of the Celiac List, whose posts to the
list have been mined for the information above.

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