In 1994 I was diagnosed with celiac disease, which led me to create Celiac.com in 1995. I created this site for a single purpose: To help as many people as possible with celiac disease get diagnosed so they can begin to live happy, healthy gluten-free lives. Celiac.com was the first site on the Internet dedicated solely to celiac disease. In 1998 I founded The Gluten-Free Mall, Your Special Diet Superstore!, and I am the co-author of the book Cereal Killers, and founder and publisher of Journal of Gluten Sensitivity.
The following article was published in The Sprue-nik Pres, Volume 9, Number 1 January 2000, Published by the Tri-County Celiac Sprue Support Group, a chapter of CSA/USA, Inc. serving southeastern Michigan. Members receive this newsletter, a shopping guide, and a new member packet full of articles and useful information. Mail-in subscriptions are welcome. For subscription information, send a note to email@example.com.
Ann gave us TIPS: Five food tips, five health tips, five quickie tips, and five things to look forward to, always in a Lets Be Positive mode.
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 Anns 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 youd better stay away from, and what you might want to look into a little bit. Try not to make an issue of it and dont be embarrassed or afraid to ask questions. Ann says she figures whatever the gathering is for, its not to discuss her diet
Forget about getting
dietary advice from your doctor. A gastroenterologists primary job
is to diagnose your illness and then send you on to a dietitian and
a support group. Please dont get mad at doctors for not knowing all
the details of the gluten-free diet. Dietitians, too, may not know a lot about
the gluten-free 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
information to more people.
Join a support group. The best place to get information about the disease and the gluten-free 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
Accept that there
are very few absolutes and very many points of disagreement about
what is and is not gluten-free 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 cant be gluten problems. But it has 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 judgments 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 the 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.
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 celiac disease, 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 gluten-free 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 celiac disease. 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; its low fat, easily digested (even for some who are lactose intolerant), and readily available.
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 gluten-free 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.
How can we get our relatives tested? First of all, dont make an issue of your diet around them. Make them drool over the delicious gluten-free dishes you are eating. Keep the current complexities about the diet to yourself. And dont 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 celiac disease 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.
The very best thing you can do for yourself is to have a life beyond celiac disease. Dont 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:
It helps to remember that we usually dont have to take expensive medications as treatment for gluten sensitivity and, unlike medications, the foods we eat have no side effects.
Buy a bread machine. When you bake your own bread, it is ultimately cheaper than any ready-made bread. Plus it usually tastes better.
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.
Europe is well ahead of the U.S. in dealing with celiac disease. We know physicians
there have been diagnosing celiac disease for a longer time
and celiacs have been on a gluten-free 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 immeasurable gluten in certain ingredients.
Unfortunately, we dont have our act together in the U.S. when it comes to celiac disease and the gluten-free 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: