Pop idol Lady Gaga did it and dropped 10 pounds for her last tour. Tennis star Novak Djokovic did it, kicked his asthma and won three consecutive Australian Opens. Conservative pundit Bill O’Reilly did it and is still telling everyone who will listen about his lower cholesterol and higher energy. It seems ditching gluten is the in thing to do.
In fact, a poll conducted in January by the NPD Group, a market research and consulting company, concluded that 30 percent of American adults say they want to eat less gluten or banish it from their diets completely. That’s far greater than the 1 percent of Americans who actually require a gluten-free diet because they suffer from celiac disease.
That 1 percent figure—the commonly accepted estimate—represents between 2.5 million and 3 million Americans, of all ages and both genders. The number of celiac sufferers today is about 4.5 times higher than it was in the 1950s, according to a study published in the journal Gastroenterology in 2009.
The reasons for this explosion are unclear. More sophisticated screening tests are available now than in decades past, and greater media attention has led to increased awareness of the disease. Yet relatively few people go for screening. Of the estimated 2.5 million to 3 million Americans believed to have celiac, experts agree that only about 5 percent have actually been diagnosed with the disease. Many of the rest may not know the reason for their symptoms, which typically include abdominal pain, bloating, gas, diarrhea and constipation. Still others may experience no digestive symptoms, yet still have celiac, which can manifest itself in a host of other ways, including skin rash, fatigue, anemia, depression, joint pain, discolored teeth and missed menstrual periods.
In all cases, the culprit behind celiac is gluten, a protein found in wheat, barley and rye that accounts for the satisfying elasticity of dough. Even in healthy people, it isn’t the easiest protein to digest, and the small intestine doesn’t always manage to process it completely.
When people with celiac eat bread, pasta or other foods containing gluten, their immune systems attack the hair-like villi that line the small intestine, causing nutrients to pass through rather than be absorbed. This results in the various digestion-related symptoms as well as nutritional issues. The auto-immune reaction also causes inflammation, leading to pain.
The word celiac comes from the Greek koiliakos, which means hollow, referring originally to the bowel but also to the way sufferers remain malnourished no matter how much they eat. Until, that is, they eliminate gluten from their diets.
What alarms doctors about the low rate of diagnosis is that the long-term consequences of celiac go beyond digestive discomfort. Conditions associated with untreated celiac include osteoporosis, infertility, miscarriage and arthritis. Worse still, untreated celiac can lead to type 1 diabetes, intestinal lymphoma and bowel cancer.
“The mortality risk for those with celiac disease is 50 to 70 percent greater than that of the general population, because there is an increased risk for other auto-immune conditions and malignancy, especially non-Hodgkins lymphoma,” says Dr. Peter Green, director of the Celiac Disease Center at Columbia University Medical Center in Manhattan. “I know that some people who don’t have celiac disease feel better on a gluten-free diet. But I also know that so many people with celiac disease, which could kill them, are not diagnosed and therefore are not on a gluten-free diet. It’s a bit ironical.”
While the causes of the disease are not fully understood, it is clear that both genetic and environmental factors are involved. All people with celiac possess one of two genes—known as DQ2 and DQ8—that belong to a family of genes called human leukocyte antigens, or HLAs. Yet those genes aren’t enough. About 30 to 40 percent of all Americans have DQ2 or DQ8, but only about 2 to 3 percent of them will get celiac. Why? One possibility being investigated is that other non-HLA genes could be involved.
But the crux of the matter may be the interaction with environmental factors. According to the website of the Celiac Disease Center, these factors include “gastrointestinal infections in childhood, timing and amount of gluten ingestion around the time of weaning, and the presence or absence of breast-feeding.” Ongoing research aims to identify these factors and tease out their interactions.
Screening for celiac begins with a simple blood test to detect the antibodies produced by the immune system’s hostile reaction to gluten. If the antibodies are present, the next step is an endoscopy and biopsy to confirm intestinal damage. Doctors compare the look of healthy villi to the pile of a shag rug. Celiac can turn that into something more resembling a tile floor.
If you have celiac symptoms, it’s important to be tested before adopting a gluten-free diet. As soon as you eliminate gluten, your immune system stops fighting itself, meaning it stops producing the telltale antibodies. It used to be that if your tests came back negative yet your symptoms persisted, medicine had no answers. That may be changing. The latest thinking is that you may suffer from some degree of Non-Celiac Gluten Sensitivity.
NCGS is the grey area of gluten intolerance, the condition doctors understand least and disagree about most. Because the body does not produce celiac-like antibodies in response to gluten and there is no actual intestinal damage, there is no test for NCGS.
“At best, it is a diagnosis of exclusion,” says registered dietician and clinical manager Margaret Weiss of the Kogan Celiac Center at the Barnabas Health Ambulatory Care Center in Livingston. “That means you exclude everything else that could be causing your issues, such as celiac, Crohn’s, ulcerative colitis or food allergies, before you go on a gluten-free diet and assess the result. If you feel better on a gluten-free diet and don’t have any other disease, you can say you have NCGS.”
In some cases, research suggests, people with symptoms of gluten intolerance may in fact be reacting to dietary sugars such as sucrose or fructose. A new study from Australia’s Monash University proposes a different villain—FODMAPs. Even doctors have a hard time unfolding this formidable acronym (which stands for fermentable, oligosaccharides, disaccharides, monosaccharides and polyols). Essentially, FODMAPs are short-chain carbohydrates and sugars that are not well absorbed in the small intestine. A wide range of foods turn out to be high in FODMAPs, including but not limited to asparagus, artichokes, onions, celery, sweet corn, apples, peaches, nectarines, many dairy products, cashews, pistachios and even wheat (the carbohydrate portion, not the gluten, which is protein). Monash recommends a diet low in FODMAPs that is also gluten free for those suffering from certain gastrointestinal disorders.
Because the study of FODMAPs—and indeed of NCGS—is in its infancy, it’s hard to draw conclusions about the long-term health implications.
Also open to debate is whether a gluten-free diet is beneficial to those who exhibit no gluten sensitivity. Many in the medical community cringe when celebrities like Lady Gaga, Djokovic and O’Reilly—none of whom is known to have celiac disease—trumpet the presumed benefits of being gluten free.
“This background noise dilutes the medical necessity of the gluten-free diet for people who really need it,” says Dr. Stefano Guandalini, founder and medical director of the University of Chicago Celiac Disease Center. “People are all jumping to blame gluten for the illnesses of the world. But me? I enjoy my gluten.”
Still, there is a school of thought that claims we’d all be better off without gluten. One movement promotes the idea of a Paleolithic diet, which is based on an ancient meal plan from the days before agriculture.
Paleo nutritionists point out that, for 200,000 years before humans ever broke bread, we were hunters and gatherers, subsisting on mostly meat and root vegetables. They conclude that humans were never meant to digest grains and cite gluten as a known immune-system irritant that causes systemic inflammation. “The inflammatory response itself is not harmful, but problems arise when your immune system is so taxed by chronic inflammation that it cannot handle acute issues like injury or infection,” says Diane Sanfilippo, the Essex Fells-based author of the New York Times bestseller Practical Paleo. “With the amount of toxins, infectious agents and stress we’re exposed to on a daily basis, no one needs their immune system to be more challenged.”
The majority of the mainstream medical community disagrees. Guandalini reminds us that only 1 percent of the population has celiac disease, “which means 99 percent have adapted.”
In fact, some health-care professionals warn against avoiding gluten except when medically necessary, because it can lead to a diet lacking sufficient fiber and nutrients. Indeed, many gluten-free pastas, breads and snacks are made from low-nutrient substitutes like rice and corn that may be deficient in fiber, calcium, folic acid, zinc and B vitamins. And overloading on empty calories can lead to weight gain and poor health.
That’s also a concern for those who must remain gluten free. “We recommend eating naturally gluten free as opposed to eating processed or boxed foods,” says the Kogan Celiac Center’s Weiss. “The necessary vitamins can be obtained by eating gluten-free grains such as oatmeal, millet, sorghum and quinoa, along with fish, eggs, fruit, vegetables, legumes and other foods naturally rich in nutrients and free of gluten.”
With celebrities spouting testimonials, it’s easy to get caught up in gluten-free fever, much as people did years ago with the Atkins and South Beach diets. But it’s not necessarily for everyone. The best advice might be to listen to your body.