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Back to Basics
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summarized by Jim Lyles
We don't normally meet in February, but since we've had so many new
members in the last year we decided to hold an informal "Back to
Basics" meeting. We had some of the group leaders and our advisors
speak on various topics and answer questions. This article contains
some highlights from that meeting.
The Celiac Kitchen (Mary Guerriero)
------------------
The first thing you should do is go through your kitchen. Look at
labels of all products and determine what is GF and what isn't. If
you have any questionable ingredients, write them down and ask someone
in the support group or bring the questionable item to the next
meeting. Don't use anything you are not sure about. Things that are
not GF should be given away, thrown away, or at least clearly marked
in some way so that the newly-diagnosed celiac in the house won't eat
them by mistake.
If you have a celiac child, you must remember that you are not that
child's only caregiver. Get brightly-colored stickers and place them
on all the GF products so that your babysitter, mother-in-law, etc.
will know what is safe for the child. Remember that these other
caregivers don't deal with CD everyday, and they don't know what is
safe and what isn't.
Put your flours in Tupperware containers and label them. Two flours
that you definitely need to refrigerate or freeze are soy and brown
rice flours.
A toaster is really hard to keep safe, if non-celiacs use it for
regular breads too. You can't get in it and clean it out.
Alternatives: Use two toasters; use a toaster oven and wipe off the
tray each time; or use a 4-slice toaster and keep one half reserved
for GF bread only.
Use separate margarine tubs for the celiacs and non-celiacs in your
household, and clearly mark both the container AND the lid of the GF
margarine. That way your celiac won't get regular bread crumbs in
their butter from toast, etc. For other condiments such as jelly,
peanut butter, and mayonnaise; either keep two of each and mark one
GF; or make sure that everyone in the household remembers to only dip
a clean knife or spoon in the containers when getting these
condiments.
When eating a communal meal, make sure that each dish has its own
serving spoon, and that these don't get interchanged. Make sure that
non-celiacs don't use their own silverware in getting portions from a
GF dish.
Get some good GF cookbooks. We have our own cookbook, published last
spring, containing recipes from our group members. It is available
for $10. Bette Hagman's two cookbooks (_The Gluten-free Gourmet_ and
_More From the Gluten-free Gourmet_, Henry Holt and Company, NY) are
highly recommended. Any bookstore will order them for you. Both are
available in paperback form now.
You need a good, heavy-duty mixer to mix heavy GF doughs; look for one
rated at 325 watts of power or higher. Mary uses a KitchenAid.
Go back through your new patient packet from time to time and reread
parts of it. You'll find a lot of things that you didn't notice when
you were newly-diagnosed, or didn't realize the significance of.
Q: Is it safe for celiacs to use bread from a bread machine that is
also used for regular breads?
A: So long as it is cleaned out thoroughly, that should not be a
problem.
Dining Out (Kathy Davis)
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Just because you are a celiac does not mean you cannot go out to eat.
You just have to take precautions. Restaurant personnel won't be
impressed with terms like "malabsorption problem" and "gluten
intolerance". What they respond to is "severe food allergy". While
this is not an accurate description of CD, it is none-the-less a term
they are familiar with and understand. So you can just tell them that
you have a severe food allergy, that you must know the ingredients of
everything you are served, or otherwise you might get seriously ill.
Most of the time you will have a good experience, though we all have
our restaurant horror stories where the waitress refused to take our
order, or we ate applesauce, green beans, and a tossed salad with no
dressing. It is important to take some GF food with you when you go
out to eat, such as GF crackers, carrots, or salad dressing to have
while other people are munching on salads and rolls. That way you
won't be tempted to eat one of the rolls or breadsticks and make
yourself sick.
When your waitress takes your order, you need to ask questions such as
"How is my meat prepared?" They are now marinating and seasoning
steak to tenderize it, and these additives often have gluten in them.
So you have to ask if the steak is plain or has been marinated and/or
tenderized. Also find out if the meat is cooked on the same surface
as breaded foods. Most places will offer to broil it for you instead.
If you can't find any main course that seems safe, you can often make
a meal out of side orders such as a vegetable platter, fruit, salad.
Stay away from salad bars, because of cross-contamination problems
such as croutins falling in the salad, etc.
We have a restaurant card we've put together that is available for $1.
This puts the diet restrictions in language restaurant personnel
understand. Use it to help you place your order. If the waitperson
gives you a hard time, ask for the manager. You are a paying customer
and they are a vendor offering you a service; you have the right to be
treated fairly and accomodated.
Some places will substitute GF items for items you can't have. For
example, Bob Evans will substitute a fruit dish for the muffin in
their breakfast. Other places do not allow substitutions and you end
up paying $10 for a chicken breast and baked potato. Just roll with
the punches, and don't deny yourself the pleasures of eating out.
Lemon juice can be a good taste enhancer for fish and can be used
instead of salad dressings on salads. Most restaurants are willing to
give you a few lemon wedges for that purpose.
Don't be afraid to ask for something that is not on the menu. If the
restaurant knows you have special needs, a lot of times they'll
prepare a meal that takes your special needs into account, even though
it wasn't listed.
Catholics & Communion (Mary Guerriero)
---------------------
Mary's priest contacted Mary a few weeks ago about a letter he
received from the archdiocese that was directed at alcoholic priests.
It said they could substitute grape juice for wine, and also said if
they were gluten-intolerant or had CD they could substitute with a
non-gluten substance! So he arranged it so that Mary brought in her
own host, wrapped in plastic wrap and it was added to the other hosts
for consecration (still wrapped). He then unwrapped it and placed it
on a separate plate. At communion time he turned to the table and
offered it to Mary without touching it (he had of course been handling
all the other hosts). So she was able to have communion for the first
time in four years, with a minimum of fuss.
So contact your priest, and see if he got the letter and is open to
doing the same thing for you. Just bring your own host, and make sure
it doesn't get contaminated from the other hosts.
Hidden Gluten (Dorothy Vaughan, our dietitian advisor)
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Glutamate (monosodium glutamate, abbreviated as MSG) does not contain
gluten, even though its name sounds similar. You should not get a
celiac-type reaction from it. However, many people (both celiacs and
non-celiacs) have allergic reactions to MSG. So if MSG bothers you,
then don't consume it. But if it doesn't bother you then you needn't
be concerned about eating it.
With natural flavorings, the main concern is the kind of alcohol that
was used to extract the flavoring. If alcohol distilled from
gluten-containing grains was used then the product should be avoided.
La Choy soy sauce used to be made without wheat, now it uses wheat.
If you have an old bottle, and the ingredients don't show wheat, then
it may be safe. But newer bottles list wheat as an ingredient.
Caramel coloring is made by browning a flour or sugar to make it dark.
You need to know the source of that flour to know if it is GF or not.
Gelatin is okay. You have to be careful with puddings; be sure to
check the label.
When contacting companies for information, try to get them to send you
the information in writing. It is more likely to be accurate.
Medical CD Information (Dr. Thomas Alexander, our physician advisor)
----------------------
Usually, within a few weeks of starting a GF diet, most newly-
diagnosed celiacs should start getting some relief from whatever
symptoms prompted them to seek help.
All first-degree relatives (parents, children, and siblings) of a
celiac should be screened for CD using celiac antibody blood tests.
Usually there is no reason to screen second-degree relatives (cousins,
etc.) unless there are symptoms which are consistent with CD.
In children, a common symptom of CD is failure to thrive. They follow
the standard growth chart for a while, then all of a sudden they don't
grow as well or stop growing altogether. Later, symptoms such as
diarrhea may become apparent.
There is a broad spectrum of symptoms related to CD. On the one end
of the spectrum you have the "classic" celiacs that doctors learn
about in medical school; a wasted, emaciated body with a protruding
stomach. On the other end of the spectrum you might have no symptoms
at all. For example, a child was diagnosed with CD, so his parents
were screened for it. It turned out that his dad, a big strapping guy
with no apparent symptoms, also had CD. And apparently there is no
question about the diagnosis. The bloodwork and the biopsy were both
definite positives, and followup tests after he had been on the diet
showed everything returning to normal. Between these two extremes lie
everyone else.
If a celiac starts eating gluten again after being GF and recovering,
they may feel fine for awhile. But eventually they will return to the
same state they were in prior to being diagnosed.
Complications of untreated CD include: malnutrition, vitamin
deficiency, iron deficiency leading to anemia (which can get so severe
you have coagulation problems with your blood); calcium leeching out
of your bones and leading to premature osteoporosis; and an increased
risk of cancer, perhaps 2-4 times that of the general population.
However, it appears from one study that celiacs who follow the diet
strictly for five years have no more risk of developing cancer than a
non-celiac. The cancers which untreated celiacs are at a greater risk
of developing are gastrointestinal in nature, with the one most
specifically related to untreated CD being lymphoma of the small
intestine (which is still very rare, but difficult to diagnose).
[NOTE: untreated female celiacs of child-bearing age may be at higher
risk of birth defects in their offspring, due to deficiencies caused
by celiac-related malnutrition. For example, spina bifida may be
linked to folic acid deficiency in the mother. See the October 1995
issue of The Spruenik Press for more information.--editor]
Most of the gluten damage to the small intestine occurs in the first
few feet, which is also the part that absorbs iron. So iron
deficiency is a common problem in untreated celiacs.
In the past, three biopsies were done to diagnose CD. If the first
biopsy showed villi damage, then the patient was put on a GF diet and
biopsied again 6-12 months later. If the second biopsy showed that
the villi were healed, then the patient was put back on a gluten-
containing diet for another 6-12 months and biopsied a third time.
Finally, if the third biopsy once again showed villi damage, the
diagnosis of CD was considered confirmed and the patient was put on a
GF diet for life.
The protocol now, once CD is suspected on clinical grounds or by the
antibody tests used to screen for CD, is to obtain a duodenal biopsy.
If the biopsy is positive then the GF diet is started. Most doctors
then do a second biopsy to confirm that the villi have healed. If the
second biopsy still shows villi damage, then you start examining the
diet: is it really strictly GF? Usually you find that the diet isn't
strictly GF, and that explains why the villi weren't fully healed.
Other causes of continued villi damage are (fortunately) quite rare;
refractory sprue is once such case. In those cases diet alone doesn't
work and steroids or other immunosuppressants may be needed. Another
possibility is that the disease has progressed into lymphoma (remember
this is very rare). The other possibility is that maybe it's not CD
after all, in which case you have to go back and look for the real
cause of the original symptoms. The second biopsy provides a
"baseline" for the patient and is generally done a year af ter
beginning the GF diet. Not everybody gets back to normal, but you do
want to see substantial improvement. This baseline then becomes
useful if, down the road, the patient gets sick again. You can then
do a repeat biopsy to see if this later illness is related to a
recurrence of CD or is something entirely different. The "baseline"
results can be used for comparison as they represent what is normal
for that patient.
Dr. Alexander stressed that you cannot diagnose CD on the basis of
blood antibody tests alone. Both false positives and false negatives
do occur on the blood tests. A proper diagnosis requires at least one
biopsy showing villi damage, followed by recovery on a GF diet and
preferably a second biopsy to confirm that the villi have healed.
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