Cynthia Kupper was 35 years old when she was stricken with a mysterious ailment. For no obvious reason, she developed anemia, jaundice, gastric distress, muscle cramping, and tingling in her hands and feet. Balance problems followed and “foot drop,” a condition in which she dragged her right foot, as if she’d had a stroke. Without dieting, she lost a startling 40 pounds. “Being a size 3 was kind of fun,” says Kupper, now executive director of the Gluten Intolerance Group of North America. “But I lost so much energy, I couldn’t walk up a flight of stairs. I looked sicker than my 93-year-old grandmother.”
Kupper’s condition turned out to be an autoimmune disorder known as celiac disease, a severe reaction to gluten, the protein in many grains, including wheat, rye, and barley.
When the immune system launches an attack against gluten, the result isn’t merely irritation of the gut (though there’s plenty of that, too, chronic diarrhea being a major symptom). The repeated attacks also end up flattening the finger-like projections in the small intestine through which nutrients are absorbed into the bloodstream. The resulting nutrient deficiencies can lead to a number of problems, from anemia to osteoporosis (caused, respectively, by a lack of iron and calcium). In children, celiac disease can lead to short stature and a general “failure to thrive.”
But celiac disease is more complicated than a digestive complaint or food allergy. As part of the immune system’s assault on gluten, the body generates antibodies to one of its own enzymes called tTG (tissue transglutaminase). This enzyme is an innocent bystander that only gets targeted because it binds to gluten in the lining of the intestines. If tTG were found only in the gut, there would be damage enough. But tTG is also found in the skin, heart, thyroid, bones, and nervous system. Antibodies against tTG can direct fire at any of these organs, too. The results may range from blistering, itchy rashes to thyroid disorders and neurological problems. “Name an organ, and it can be affected,” says Dr. Peter Green, director of the Celiac Disease Center at Columbia University’s College of Physicians and Surgeons.
As recently as a decade ago, celiac disease was considered rare. Now almost everyone seems to know someone who has it. That’s not just the result of better diagnosis, which today involves blood testing and confirmatory intestinal biopsy. Recent studies suggest that celiac disease is becoming more common. One 2009 study in the journal Gastroenterology compared banked blood samples from the early 1950s with recent samples and, using the blood tests for celiac disease, found a fourfold increase in the last 50 years.
Celiac disease is now thought to affect one in 100 people of all ages and races. Unfortunately, it often takes years before the disease is correctly identified, according to the National Institutes of Health.
Search for the Cause
Gluten was first identified as the trigger in celiac disease after a Dutch doctor noted the precipitous drop in cases during the bread shortages of World War II—and the rebound of the disease once bread became available again.
But scientists believe that it’s more than just bread, crackers, cookies, pasta, and other wheat-filled foods that are responsible for the increase in celiac disease. In order to develop the ailment, a person must eat gluten, and also carry genes that predispose her to gluten sensitivity. “But our genes haven’t changed in the last 50 years,” points out Dr. Green. He cites a Finnish study that compared a high-celiac population in Finland to those across the border in Russian Karelia with low rates of the disease. “The two have similar genes. That means there must be some other environmental factor that helps initiate the immune response.”
One possible explanation focuses on the “hygiene hypothesis,” already suspect in the rising tide of allergies and asthma. According to this theory, humans today grow up in more sterile environments than our ancestors did. When infants and young children fail to encounter historic levels of household and farm germs, their immune systems—which evolved to fight these bugs—go looking for other foreign invaders. They end up targeting things like pollen, peanuts, or gluten. Perhaps Grandma was right when she advised, “You have to eat a peck of dirt before you die.”
Improved hygiene, however, is not the only shift in Western society. Researchers are investigating the potential impact of a half-century of changes in how we live, what we eat, and how medications affect the workings of the gut. We take different drugs and more of them, from potent antibiotics to acid blockers. These pills affect the populations of bacteria that naturally inhabit the gut. Some researchers suggest that dietary changes, too—including more fiber-poor, sugar-rich foods, and consumption of sulfites found in cooked and processed foods as well as in wine and beer—can affect intestinal flora. Exactly how these might contribute to celiac disease is unclear, but one possibility might be increasing the permeability of the gut, which disrupts the way the digestive system functions. “When the tight junctions between cells in the intestinal lining come apart, gluten seeps into the underlying tissue and incites the immune system,” says Dr. Alessio Fasano, director of the Center for Celiac Research at the University of Maryland School of Medicine.
Meeting the Need
Whatever the fundamental cause, the solution is simple in concept, if difficult in practice—eliminate gluten from the diet. Fortunately, food manufacturers accepted the challenge of providing gluten-free fare (though not cheaply), and pharmaceutical companies are exploring potential drug treatments.
They can hardly come too soon. A decade ago, there were few gluten-free baked goods, and those products “tasted like cardboard-Styrofoam combinations,” says Kupper, who now enjoys renewed energy and good health after embracing the gluten-free life, adding, “I’m really doing well.”
Today, celiac sufferers can find a burgeoning array of gluten-free offerings that are actually tasty, even if pricey. The Celiac Disease Center at Columbia University found that the cost tends to run twice as high for gluten-free products as for normal versions of bread, pasta, cookies, cakes, and crackers. (A cheaper and super-healthy approach is to eat a diet that’s naturally free of gluten—including vegetables, fruits, fish, nuts, lean meat, rice, and potatoes.)
Experts advise celiac consumers to carefully examine food labels for hidden gluten: Its presence is not always obvious. For example, frozen or canned fruits and vegetables, processed cheese spreads, and flavored yogurts, even lotion, toothpaste, and shampoo, may contain gluten.
Drugs are still years away. But Alvine Pharmaceuticals in California is conducting a trial testing digestive enzymes for gluten. These would help break down indigestible gluten fragments into individual amino acids that the immune system would not recognize as threatening. Another company in Australia is working on a vaccine. Also in Australia, a third group has launched a clinical trial giving participants hookworm infections, which appear to alter the immune response of celiac patients in beneficial ways.
With all these lines of research, it seems likely that at least one of these approaches to drug therapy will eventually pan out. When that day comes, scientists will be able to boast that, for the first time, celiac sufferers can have their gluten-laden cake. And eat it, too.
It once seemed simple. Either you had celiac disease or not. But a new category of sufferers appears to be emerging—those with a milder form of gluten sensitivity. Although they fail to meet the most important of diagnostic criteria for celiac disease—an abnormal bowel biopsy—they have antibodies against tTG and gluten. Others lack antibodies, but have symptoms that go away when gluten is removed from the diet.
“What we’re learning is that there is a continuum between optimal functioning and full-blown disease,” says Dr. Mark Hyman, author of the runaway bestseller UltraMetabolism. He routinely does antibody tests on patients with chronic digestive, inflammatory, and autoimmune disorders, ranging from rheumatoid arthritis and irritable bowel syndrome to migraines and psoriasis. He finds that many of them feel much better when they eliminate gluten from their diets. “Trying to label whether you do or don’t have the disease is irrelevant, if you’re on the continuum,” he says. “The real question is whether or not you’re optimally healthy.”
Signs & Symptoms
Celiac disease, long under- diagnosed (or misdiagnosed), can masquerade as a number of other ailments, with symptoms that include:
• abdominal bloating
• chronic diarrhea
• weight loss
• bone or joint pain
• depression or anxiety
• tingling numbness in the hands and feet
• itchy skin rash