Once considered rare, celiac disease is now believed to be relatively common, affecting about one percent of the population. One reason it’s been under-diagnosed is that symptoms are often diffuse and can be attributed to a number of other more common conditions.
About one third of those with celiac disease experience intestinal pain, gas, bloating, diarrhea and unexplained weight loss. The other two thirds of patients might suffer more long-term effects such as fertility problems, anemia, fatigue, signs of osteoporosis and a higher risk of cancer of the small intestine. Delayed diagnosis has been common in the past with many persons going 10 years before the disease was recognized.
Celiac disease can occur at any age. In children it might show up as short stature and failure to thrive. It’s most common in the 30s and 40s but can also occur in seniors.
An autoimmune disorder, celiac disease creates a state of chronic inflammation of the mucosa in the small intestine. The body’s immune response ultimately destroys the lining of the intestine, interfering with the body’s ability to absorb nutrients. Iron, folate and calcium levels, all of which are absorbed by the small intestine, are especially affected.
The antibodies produced by the body in reaction to gluten continue their damage beyond the small intestine, attacking other tissues and organs such as the liver and skin. One possible symptom is a form of dermatitis that shows up as an intensely itchy rash on elbows, knees and buttocks.
When patients have suspicious symptoms a physician can begin screening with a blood test for specific antibodies. If the blood test is positive, it’s usually followed up with an intestinal biopsy, considered the gold standard of diagnosis.
Lifelong Commitment Required
The treatment for celiac disease is total avoidance of wheat, rye and barley products for the rest of one’s life. There is no medication or surgical option. Following such a strict diet on a permanent basis requires education, determination and commitment. It also underscores the need for a definite diagnosis.
A patient who knows he certainly has celiac disease is more motivated to follow the diet. And no one should be asked to follow an exclusionary diet of this kind unless it is essential to health.
Patients who are experiencing symptoms such as diarrhea, bloating, abdominal pain and gas often begin to notice an improvement within weeks of following the diet, although it may take as long as six months for the intestine to heal.
Other long-term benefits are not always as obvious to patients, but switching to a gluten-free diet improves bone mineral density, lowers the risk of cancer of the small intestine and can undo damage to joints, skin and other body systems.
Following a gluten-free diet is more difficult than simply giving up bread, cakes and cookies. Wheat, and to a lesser extent rye and barley, are staple foods in Western cultures. In addition to baked goods, cereals and pasta, wheat is used as an additive in countless packaged products including canned soups, prepared frozen foods, imitation seafood, sauces, gravies, fillings, packaged and prepared meats. Even soy sauce and prescription medicines and vitamins may contain gluten.
Learning to read labels is essential and it’s important to be aware of the many descriptors that can be used to indicate products containing gluten. Terms on labels to look for include: barley, bulghur, couscous, durum flour, Einkorn, Emmer, farina, farro, graham flour, kamut, oats, semolina, spelt, triticale, wheat bran, wheat flour and wheat germ. Other terms on labels such as “hydrolized protein,” “modified food starch,” and “seasoning” may also indicate foods that contain wheat.
Although it sounds picky, it’s important to identify all sources of gluten since studies show that as little as one eighth of a teaspoon of wheat flour can trigger an inflammatory reaction in the small intestine. It’s not uncommon to find that when patients following a gluten-free diet fail to improve, the reason is traced to inadvertent sources of gluten in the diet.
Although the list of foods to avoid may seem long, there are many safe foods, including all plain meats and fish, most dairy products, fruits and vegetables, legumes, nuts and seeds, oils and a number of other grains and types of flour including rice, quinoa, buckwheat, sorghum, potato flour, nut flours, flours made from beans and chickpeas and soy flour. Wine and alcoholic beverages are also allowed, although not beer (except for gluten-free beers).
Many gluten-free products including breads, cakes, cookies, cereals, soups and entrees are now available from both health food and grocery stores.
It’s essential for patients to learn to read labels carefully. The Food Allergen Labeling and Consumer Protection Act requires food manufacturers to list the eight major food allergens on labels. Wheat is included on this list of eight, although not rye or barley.
Studies of compliance among persons diagnosed with celiac disease found that one third of adults diagnosed as children did not follow a gluten-free diet. A Canadian study found that 44 percent of celiac patients reported the diet was either very difficult or moderately difficult to follow. Other studies show that patients reported severe limitations on lifestyle, causing them to avoid restaurants and travel much of the time.
The demands of a gluten-free diet are certainly a burden, but the rewards in terms of lowered health risks are enormous. Substantially higher risks of a number of serious diseases can be reversed when the small intestine is given a chance to heal and can function normally again.
Tana N Kaefer, PharmD
