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What You Should Know About Celiac Disease
After years of living with Type 1 diabetes, you’re a pro at counting carbohydrates and adjusting insulin doses. Over the past year, however, your diabetes has become difficult to control. You’ve experienced weight loss, frequent bouts of diarrhea, and fatigue. You’ve also had fluctuating blood glucose levels — both hypoglycemia and hyperglycemia — and needed frequent insulin adjustments. You don’t know what’s wrong, and what’s worse, your doctor — make that doctors — can’t explain your symptoms, either. They’ve suggested everything from irritable bowel disease to depression, but nothing seems to help.
Then one day, a friend mentions that a colleague of hers has a daughter who has Type 1 diabetes and celiac disease, or intolerance to gluten. Her symptoms were similar to yours until her doctor put her on a special, gluten-free diet. Now she’s fine — as long as she doesn’t eat the wrong foods.
You’ve never heard of celiac disease before, but you’re curious. What is this disease and what causes it? What foods are off-limits? Which are OK to eat? Most of all, how would giving up all gluten-containing foods affect your life and your diabetes control? Before you make another appointment with your doctor, you decide to do some research of your own.
What is celiac disease?
Common symptoms of malabsorption include gas, bloating, diarrhea, and weight loss. Other symptoms may include fatigue, anemia, irritability, or depression. In many cases of undiagnosed celiac disease, however, there are no symptoms at all.
Malabsorption of nutrients can create serious deficiencies of the fat-soluble vitamins A, D, E, and K; of folate and vitamin B12; as well as of iron and calcium. In children, this can lead to delayed growth or short stature as well as delayed puberty. Long-term complications of untreated celiac disease include osteoporosis, fertility problems, and benign or malignant tumors of the small intestine. Vitamin and mineral supplements are an essential part of treatment when the intestinal damage, or villous atrophy, is first recognized.
Another autoimmune disease caused by gluten intolerance is dermatitis herpetiformis, which mainly involves the skin. A severe, itchy, blistering skin rash shows up, usually on the elbows, knees, buttocks, and back; in severe cases, the rash can be on any skin surface. Dermatitis herpetiformis is diagnosed by a skin biopsy, but if an intestinal biopsy is also performed, damage to the villi is usually found, although to a lesser degree than that which occurs in celiac disease. Usually, there are no digestive symptoms of dermatitis herpetiformis, but it is treated with a gluten-free diet as well as with medication for the rash.
Celiac disease can be more difficult to diagnose than dermatitis herpetiformis because its symptoms often mimic other digestive diseases such as irritable bowel disease, Crohn’s disease, ulcerative colitis, and intestinal infections. Complicating the matter is the fact that people with untreated celiac disease often develop lactose intolerance (the symptoms of which also include gas, bloating, and diarrhea) because of the damage to the intestinal villi. Lactose, the sugar in milk and other dairy products, is digested by the enzyme lactase, which is located on the villi. Usually, lactose intolerance disappears within about 2 to 12 months of starting a gluten-free diet. In some cases, however, a person remains lactose intolerant and must continue to avoid dairy products as well as gluten.
Once diagnosed, the only treatment of celiac disease is lifelong, complete elimination of gluten-containing foods from the diet. With gluten elimination, symptoms may disappear within a few days, but complete healing of the small intestine may take three to six months or, in some cases, up to two years. Eating even a small amount of gluten can make a person sick again. In a small percentage of people, a gluten-free diet does not improve symptoms; these people may need to be treated with steroids or immunosuppressive drugs.
Who gets this disease?
Since celiac disease is an inherited disease, all first-degree family members — parents, siblings, and children — of people with celiac disease should be screened. About 10% to 15% of first-degree family members will also have celiac disease. In addition, celiac disease often occurs in those with another autoimmune disorder, such as Type 1 diabetes, thyroid disease, Sjögren syndrome, rheumatoid arthritis, and Addison disease. Celiac disease is found in 5% to 7% of people who have Type 1 diabetes; some researchers recommend that all children with Type 1 diabetes be screened for celiac disease.
Women are about twice as likely to have celiac disease as men, and the disease is most common in people of European descent (the incidence is particularly high in Scandinavian countries, Italy, and Ireland). It is less common in those of African or Asian heritage. In countries where there is greater awareness of the disease, there is increased diagnosis. In Central Europe, 1 in 200 people has celiac disease. In Italy, every child is screened for celiac disease by age six; approximately 1 in 250 Italians has the disease. In the United States, celiac disease is largely unrecognized and underdiagnosed. While only about 150,000 Americans have been diagnosed with the disease, a recent study suggests that as many as 1 in 133 Americans may have celiac disease. Underdiagnosis of celiac disease is a serious concern, because the risk of long-term complications increases the longer it goes untreated.
Obvious foods to avoid on a gluten-free diet are most pizzas, breads, bagels, crackers, cookies, cakes, pies, gravies, and flour-based sauces. But there are many less obvious sources of gluten. Communion wafers contain gluten; cooking sprays may contain grain alcohol; malt and malt flavoring, found in cereals, syrups, and beer, are usually made from barley (although some malt products are made from corn). Many licorice candies contain gluten. For this reason, it is very important to read the ingredients list on the label of every food product you purchase and to scrutinize the fine print right down to the food colorings, seasonings, preservatives, and thickeners, many of which contain gluten.
Reading the label may not be enough, however, since some sources of gluten may not be listed on the label. Gum wrappers, for instance, are sometimes dusted with flour to prevent sticking. What’s more, manufacturers sometimes change the way a product is made. Food that was gluten-free last month may have different ingredients this month. The only way to be sure about a product is to call or write the manufacturer. The manufacturer’s name, address, and telephone number appear on the food label. When calling a manufacturer, have the lot number of the food in question available. Many manufacturers also provide lists of their gluten-free foods.
After a while, you will learn to recognize suspect foods and ingredients, but a general rule of thumb is, “If you don’t know what’s in it, don’t eat it.” In the United States, at least, the word “starch” on a food label indicates cornstarch, which is safe to eat. “Modified food starch” or “modified starch,” on the other hand, could be made from corn, arrowroot, tapioca, or wheat. Hydrolyzed vegetable protein, textured vegetable protein, or hydrolyzed plant protein is usually made from wheat or wheat mixed with soy or corn. Vanilla and other flavoring extracts, prebasted turkeys, canned and dried soups, sauces, gravies, luncheon meats, caramel coloring, and soy sauce made from fermented wheat can all contain sources of gluten. Gluten is even used in nonfood items, such as some medicines, toothpastes, mouthwashes, and the glues on mailing labels and envelopes. Ask your pharmacist if any of your medicines contain gluten. Again, calling the manufacturer of a product to ask if it is totally gluten-free is a good habit to get into.
What to eat
Since even a small amount of wheat, rye, or barley can set off a reaction, it’s important to keep foods strictly segregated in households where those who don’t have celiac disease consume those grains. If anyone in the household uses wheat flour in cooking or baking, be aware that it can remain in the air for up to 24 hours. It can also remain on hands that are not washed thoroughly. Cooking utensils that have touched foods containing gluten must be cleaned carefully before preparing gluten-free food. Difficult-to-clean items such as a flour sifter should not be used to sift both wheat flour and gluten-free flour. Even using a toaster that has crumbs from a piece of wheat bread can contaminate gluten-free bread.
When ordering fried food in a restaurant, be sure to ask whether any foods that have a breaded coating have been cooked in the oil your food will be cooked in. Request that your food be cooked in a separate pan to be on the safe side.
There are several national organizations that provide information on celiac disease and foods to eat or avoid. A list of these organizations is provided here. Joining a celiac support group in your area can provide you with emotional support, up-to-date information, and new meal ideas. Gluten-free cookbooks can help you find tasty recipes and provide you with tips on how to substitute gluten-free products in your favorite dishes. (See “For Further Reading and Information” for a collection of resources on gluten-free living.)
Celiac disease with Type 1 diabetes
For people with diabetes and celiac disease, starting a gluten-free diet requires learning the carbohydrate content of new, gluten-free foods, so they can be introduced into a meal plan or so that insulin doses can be adjusted accordingly. (Click here for information about the carbohydrate content of various gluten-free foods.) In basic carbohydrate counting, one serving of carbohydrate is 15 grams of carbohydrate. For those who adjust their insulin doses based on the amount of carbohydrate they eat, it is important to know exactly how many grams of carbohydrate are in a serving of food. A registered dietitian can help you figure this out and make adjustments to your meal plan or insulin regime.
Nutrition software programs can also help you analyze foods and recipes for carbohydrate content per serving. The United States Department of Agriculture Web site is a good source of nutrition information. There are also books on carbohydrate counting that may be helpful. Don’t forget to check the serving size on food labels and to assess how many servings you are actually eating. Since fiber is not digested or absorbed, you can subtract the grams of fiber from the total carbohydrate on the label if there are more than 5 grams of fiber per serving. When substituting new, gluten-free ingredients into your favorite recipes, add up the carbohydrate grams in each ingredient and divide by the number of servings the recipe yields. Write this information on your recipe cards so you will only have to do these calculations once.
Straying from a gluten-free diet — even just a little bit — can trigger the immune system reaction that damages your intestines, whether or not you experience symptoms. Just as adjusting to diabetes requires changing eating patterns and lifestyle habits, learning to prepare and enjoy gluten-free foods — and avoid gluten — can be a challenge at first, but it doesn’t have to mean a lifetime of tasteless meals. The variety and availability of gluten-free foods is greater now than ever before, and food manufacturers and even restaurants are becoming increasingly sensitive to the needs of people with food intolerances. Moreover, omitting gluten may introduce you to a rich variety of “alternative” grains, nuts, and seeds that are not only flavorful, but also rich in vitamins, minerals, protein, and fiber. In the end, better health, higher energy, and improved blood glucose control are worth the effort of adjusting to your new meal plan.
Statements and opinions expressed on this Web site are those of the authors and not necessarily those of the publishers or advertisers. The information provided on this Web site should not be construed as medical instruction. Consult appropriate health-care professionals before taking action based on this information.