Celiac disease (an autoimmune disorder whose symptoms are triggered by gluten, the protein content in wheat, barley, rye, and spelt ) is on the rise. That’s one reason for the rise in popularity of gluten-free food.
Celiac specialists say the disease isn’t diagnosed as often as it should be. As a result, many people suffer with it for years, often after getting other — and incorrect — diagnoses and useless treatments.
But a growing number of the people dodging gluten fall into a gray area: they don’t have celiac disease but seem to be unable to digest gluten properly. There are no tests or strict criteria for this problem, aside from simple trial and error with a gluten-free diet. Some people may be getting caught up in a food fad. But many others probably do have trouble digesting gluten or perhaps the sugars in some of these grains (like the lactose intolerance that makes it hard to digest dairy foods).
Do you have a gluten problem?
The classic and most immediately noticeable symptoms of celiac disease are, not surprisingly, gastrointestinal: bloating, flatulence, and diarrhea, sometimes with smelly stools. People who can’t digest gluten or grain sugars may have similar symptoms.
Celiac disease can severely impair the absorption of nutrients. In children, this may lead to stunted growth; in adults, the consequences include anemia (because iron isn’t being absorbed) and weaker bones (because calcium and vitamin D aren’t getting into the body). Anemia causes fatigue and malaise, but some people with celiac disease feel that way without anemia.
Doctors sometimes miss the celiac disease diagnosis because they’re looking for the classic gastrointestinal symptoms, not the vaguer ones that stem for the most part from malabsorption of nutrients.
One major difference between celiac disease and grain-related digestion problems is that when it’s just a digestion problem it typically doesn’t lead to malabsorption and nutritional deficiencies.
Women with untreated celiac disease have higher-than-normal rates of menstrual abnormalities and infertility. A large study published in 2007 found an increased risk of pancreatitis in people with celiac disease. It’s not clear whether these associations suggest a cause-and-effect relationship or if celiac disease and these conditions happen to share an underlying cause.
Grains for the gluten-challenged
We’re often too quick to depend on pills instead of first working to change our diet and exercise habits. But with celiac disease, there’s no pill, and a fairly radical change in diet is the only treatment. Drug companies have started to take some interest in the disease, and treatments that would block the absorption of gluten are being investigated, but none so far are close to gaining FDA approval.
Until you need to avoid gluten, you probably don’t realize how ubiquitous it is. Gluten is used as a thickening agent and filler in everything from ketchup to ice cream. The inactive ingredients in many medications are gluten-based. And even when gluten isn’t an ingredient, it may inadvertently get into a food because a wheat-based food was processed in the same factory, or wheat was grown in a nearby field. At home, wooden utensils and toaster ovens are gluten “hot spots.” Oats don’t contain gluten, but many people with celiac disease avoid them because of contamination problems.
The gluten-free diet has traditionally depended on starch from rice, corn, and potatoes. Food makers have also learned how to use xanthan and guar gums to replace gluten’s elasticity: a common complaint about gluten-free baked goods is that they are powdery. But these formulations can also leave diets short of fiber and B vitamins. Melinda Dennis, the nutrition coordinator at the Beth Israel Deaconess Medical Center Celiac Center, encourages patients to eat foods made with unconventional but nutritionally well-rounded substitutes, including amaranth, buckwheat (no relation to wheat), millet, quinoa, sorghum, and teff. She calls them the “super six” because of their high vitamin and fiber content.
Eating out is one of the biggest issues for people with gluten problems. Vegetables get contaminated because they are steamed over pots of pasta water. Fish and chicken are floured to hold seasonings. But many restaurants are beginning to offer gluten-free items. And there are some celiac-friendly cuisines, even if they are not overtly gluten-free. Ethiopian (which uses teff), Indian, Mexican, and Thai are good possibilities.For more information on common digestive disorders, order our Special Health Report, The Sensitive Gut, at www.health.harvard.edu/SG