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Tips for Celiacs<2>
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by Ann Whelan
This is a report on a presentation by Ann Whelan, Editor of
Gluten-Free Living, at the Feb. 20th, 1999 meeting of the Houston
Support Group.
Background: Ann has officially been a celiac for eight years, but
probably had it much longer. Before starting Gluten-Free Living (now
nearly 4 years old) she was managing editor of Baby Talk Magazine.
Now she also teaches writing and grammar at a local college. Ann
developed Glufen-Free Living because she felt there wasn't reliable,
clearly understandable information about Celiac Disease (CD) and
wanted to use her publishing skills, a profession she loves, to
benefit the celiac population.
Ann gave us TIPS: Five food tips, five health tips, five quickie
tips, and five things to look forward to, always in a "Let's Be
Positive" mode.
Food Tips:
1. Concentrate on what you CAN eat, not what you can't. Try not to
blow the gluten-free (GF) diet out of proportion. If you take
processed foods out of the equation, you can eat almost anything:
fruits, vegetables, beans, meat, fish, rice, corn, etc. When you
eat plain food, you start to really taste food the way you never
tasted before. What we can eat is good for us.
2. Get used to the fact that you have to do more cooking and baking
Turn this factor into an asset and become a good GF cook. Eat
simply. For breakfast Ann eats eggs, yogurt, fruit, Jowar
(sorghum) Jo Crisps Cereal, or even vegetables.
For lunch you can eat leftovers. Leftover rice mixed with a
vegetable is always a good idea; you can keep bags of frozen peas,
corn, or broccoli in the freezer. One of Ann's favorite lunches is
to put plain peanut butter on a rice cake and slice apples on top.
For snacks try fruit, Jell-O, or home-popped popcorn, all of which
can be quickly prepared.
In a restaurant, first check the menu to see what you can eat
without question, what you might be able to eat if you ask
questions, what you'd better stay away from, and what you might
want to look into a little bit. Try not to make an issue of it and
don't be embarrassed or afraid to ask questions. Ann says she
figures whatever the gathering is for, it's not to discuss her
diet.
3. Forget about getting dietary advice from your doctor. A
gastroenterologist's primary job is to diagnose your illness and
then send you on to a dietitian and a support group. Please don't
get mad at doctors for not knowing all the details of the GF diet.
Dietitians, too, may not know a lot about the GF diet. We celiacs
need to partner with dietitians to get them up to speed and help
those we educate teach other dietitians. There are many pieces of
the celiac pie that need to be improved, and adopting and educating
dietitians is an important step toward getting more reliable
information to more people.
4. Join a support group. The best place to get information about the
disease and the GF diet is from a support group because the leaders
and members deal with diet issues every day. Celiacs need to
support their group leaders and volunteer assistance. Ann says she
feels strongly about all of us giving something back to society for
the richness that we have managed in our own personal lives. So if
you are really interested in making celiac disease your "thing",
you can volunteer to work with a support group
5. Accept that there are very few absolutes and very many points of
disagreement about what is and is not GF or what is and is not
appropriate for celiacs. We know with certainty that the things we
should not eat are wheat, barley, rye, oats, spelt, triticale and
kamut. The next thing we need to find out is where those grains
actually are, not necessarily where they might be. We should have
a basic diet we can rely on before we waste valuable time and
effort looking for needles in haystacks. In her research Ann has
discovered that a lot of the things we celiacs believe but have
never checked out are not necessarily true in the real world.
Misinformation takes hold in the celiac community and then we are
left trying to disprove something that should never have been
proposed in the first place. In other words, we are left trying to
prove a negative.
For example, research shows that canola oil is GF, so it should be
appropriate for any celiac except those with a special sensitivity
to it. Since it is GF, any sensitivities to canola oil can't be
gluten problems. But it's been publicized that canola oil is not
appropriate for any celiac, so everyone (especially food vendors)
has been forced to decide what to do about this product, which
actually happens to be a "healthy" oil. Canola oil did not belong
on any list of products that all celiacs should avoid in the first
place. Celiacs need to make their own judgements and realize that
no one can tell them what they cannot eat without explaining and/or
proving that it is dangerous. You have to do the best you can with
tlie diet, but try to stay away from any gluten-fearing paranoia
that exists. Try to know your sources and the reasons why you
should be avoiding something.
Health Tips:
1. Eat a varied diet, which will provide a wider variety of vitamins
and minerals for better nutrition. Iron, calcium and folic acid
are the three nutrients most frequently malabsorbed by celiacs, so
be sure you eat the foods that contain them.
2. Whatever your age and whatever your sex, do get a bone density
test. Many celiac experts say that most celiac patients have some
degree of abnormal bone loss, often serious, at diagnosis. If your
doctor is not up to speed on CD, you may have to firmly request the
simple, noninvasive bone density test. The treatments for
osteoporosis include hormone therapy and some new drugs, primarily
Fosamax.
There are 10 million Americans today who have osteoporosis, and
18.5 million more who have some early signs of osteoporosis. The
cost of treating these problems is enormous. Yet if a person has
osteoporosis and also has hidden CD, and is taking osteoporosis
medications and eating calcium-rich foods, the treatment will
probably not be optimum if the patient is malabsorbing the calcium
she is eating and perhaps even the medications. Since the celiac
connection to osteoporosis is the malabsorption of calcium,
treating the cause of the malabsorption--the GF diet --needs to
come before consideration of Fosamax or other drugs.
Celiacs need to eat dairy products because they are a prime source
of calcium. Calcium, which has such a strong connection with
osteoporosis, is one of the most malabsorbed nutrients in CD. Some
celiacs have difficulty eating dairy products because of associated
lactose intolerance, but it is extremely important to get dairy
products into your body in whatever way works. Of all the dairy
products available, one of the best is yogurt; it's low fat, easily
digested (even for some who are lactose intolerant), and readily
available.
3. Have an annual physical exam that includes a complete blood count
(CBC) and stool testing, according to Dr. Joseph Murray of the
Mayo Clinic. He thinks you should have thyroid testing every other
year, but if you already have thyroid disease, more frequent
testing might be advantageous. The experts also say you should
have serology antibody testing once a year to test for compliance
with the GF diet. A positive result almost always means some
gluten has been inadvertently ingested. Dr. Murray says you then
have to: Check your diet, check your diet again, and check your
diet a third time. He also recommends taking one good
multi-vitamin a day that includes 100 percent of the recommended
daily amount of B-complex vitamins, iron, folate and other vitamins
and minerals.
Whatever other supplements you take will depend on your own
personal needs. You will need to investigate the possible gluten
content in everything you ingest, including (and especially!)
vitamins and medications. We have to be careful of everything that
goes into our mouths, but especially of anything we take every day.
4. Encourage your first-degree relatives to get screened for CD.
Usually these relatives are not comfortable with your request
because they don't want to follow your diet, but 10% of them will
probably have CD, and of the 10% who have it, 50% will have no
symptoms but will have flat intestinal villi.
How can we get our relatives tested? First of all, don't make an
issue of your diet around them. Make them drool over the delicious
GF dishes you are eating. Keep the current complexities about the
diet to yourself. And don't nag!
If you can, send donations to the University of Maryland Prevalence
Study, which is testing first-degree relatives (and others) to try
to find out what the true prevalence of CD is in the United States.
If it turns out that celiac disease is not rare, then the FDA and
food manufacturers will have to pay more attention to our problems.
Please make checks payable to the UM Foundation, Inc. Center for
Celiac Research, Attn: Pam King, 700 W. Lombard St., Room 206,
Baltimore, MD 21201. These funds are administered by the
University of Maryland Foundation, Inc.
5. The very best thing you can do for yourself is to have a life
beyond CD. Don't let having this disorder stop you from doing
anything! Make sure you have other interests. Make sure you
exercise. Make sure you get out and eat with gluten-eating people.
Make sure you travel. Make sure you stay all-around healthy.
Five Quick Tips:
1. Buy your own toaster or toaster oven. This is an easy way to avoid
cross contamination.
2. Try not to complain about the cost of GF products. They are
expensive for a reason. The manufacturers have to pay more to get
supplies, pay more to process the food, and they have to pay more
to market it because they don't have normal marketing avenues. We
have to pay more because we have to order a lot by mail.
It helps to remember that we usually don't have to take expensive
medications as treatment for gluten sensitivity and, unlike
medications, the foods we eat have no side effects.
3. Buy a bread machine. When you bake your own bread, it is
ultimately cheaper than any ready-made bread. Plus it usually
tastes better.
4. Not everyone can do this, but it helps to avoid processed food.
Even when you investigate products over the phone or get a letter
from the manufacturers or consult some of the commercial product
listings that are available, you are still not totally sure the
product is safe. Life is simpler and safer when you avoid
processed foods--or eat them as infrequently as possible.
5. Remember that Europe is well ahead of the U.S. in dealing with CD.
We know physicians there have been diagnosing CD for a longer time
and celiacs have been on a GF diet longer in Europe than here.
Yes, several European countries do allow a small amount of wheat
starch in international products, but their research has not shown
an increased morbidity or mortality rate in their celiac
population. Ann says she tends to think of this when she hears
Americans going nuts about potential (versus actual) trace amounts
of scientifically unmeasurable gluten in certain ingredients.
Unfortunately, we don't have our act together in the U.S. when it
comes to CD and the GF diet. All U.S. celiacs have a lot in
common and we all need to pull together, not apart, for our common
good.
Five Things to Look Forward To:
1. A good possibility that doctors will be able to diagnose CD without
the biopsy in the years to come.
2. The Celiac International Conference in August 2000 in Baltimore.
Those who attend can plan a nice east coast vacation around the
dates (August 10-13) if they'd like.
3. GF food that gets better and more varied as the number of vendors
grows. Hopefully our specialty foods will be more easily available
locally. In the meantime, ask your supermarket managers to stock
specific products in their stores. You might be surprised at how
quickly they agree to do so.
4. More awareness of CD, especially in terms of research, doctors'
understanding, availability of GF food, and interest from the
federal government and FDA. We need to make CD a household word
because it impacts so many peoples' lives.
5. A united U.S. effort to support celiacs!!
Highlights of Gluten-Free Living: Previous issues from this year have
included articles on CD and diabetes, canola oil, GF travel, a report
on the Canadian Celiac Association's annual convention, and answers
from medical experts to questions from celiacs across the country.
The most recent issue includes articles on quinoa, maintaining a
positive attitude, and several recipes, among other topics.
Subscribe to Gluten-Free Living (6 issues for $29;12 issues for $49),
PO Box 105, Hastings-on-Hudson, NY 10706.
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