- Celiac Disease Diagnosis, Testing & Treatment (Gluten-Free Diet)
- Tips for Celiacs - by Ann Whelan
Tips for Celiacs - by Ann Whelan
- By Scott Adams
- Published 07/26/1996
- Celiac Disease Diagnosis, Testing & Treatment (Gluten-Free Diet)
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, and since then it has become an invaluable resource to people worldwide who seek information about celiac disease and the gluten-free diet.
In 1998 I created The Gluten-Free Mall, Your Special Diet Superstore! which was also another Internet firstâit was the first gluten-free food site to offer a shopping cart-style interface, and the ability for people to order gluten-free products manufactured by many different companies at a single Web site.
I am also 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 firstname.lastname@example.org.
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.
- Concentrate on what you CAN eat, not what you cant. 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.
- Get used to the
fact that you have to do more cooking and baking. Turn this factor into
an asset and become a good gluten-free 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 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 reliable
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.
- 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.
- 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 celiac disease,
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 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.
- Encourage your
first-degree relatives to get screened for celiac disease. Usually these relatives
are not comfortable with your request because they dont want to follow
your diet, but 10% of them will probably have celiac disease, 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, 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:
- Buy your own toaster or toaster oven. This is an easy way to avoid cross contamination.
- Try not to complain
about the cost of gluten-free 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 dont
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 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.
Remember that 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:
- A good possibility that doctors will be able to diagnose celiac disease without the biopsy in the years to come.
- 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 theyd like.
- gluten-free 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.
- More awareness of celiac disease, especially in terms of research, doctors understanding, availability of gluten-free food, and interest from the federal government and FDA. We need to make celiac disease a household word because it impacts so many peoples lives.
- A united U.S. effort to support celiacs!!
As always, Celiac.com welcomes your comments (see below).