The nutritionists at Columbia University's Celiac Disease Center have heard every myth about celiac disease, even from their own patients.
Kissing can transfer gluten and be a danger? Celiac disease only occurs in people of European descent? Anne Roland Lee, EdD, and Jessica Lebovits, RD, bust these commonly held myths as they help the center's patients adopt and thrive on a gluten-free diet, the only safe and effective treatment for celiac disease.
Myth 1: Celiac disease is a rare condition.
Celiac disease is actually common and thought to affect one in 100 people worldwide, which makes it more prevalent than peanut allergy. However, many individuals with celiac disease remain undiagnosed.
Celiac disease is thought to be more common than peanut allergy.
Over the past few decades, the incidence of celiac disease has been steadily increasing. A recent review and meta-analysis by Columbia gastroenterologist Benjamin Lebwohl, MD, and his colleagues found that the number of people with celiac disease has been rising since the second half of the 20th century in nearly every country where data on the disease are available.
"The amount of gluten in wheat has not changed, so we know that the rise in celiac is not due to any change in the wheat itself," says Lee. "It may be that we are eating more wheat than ever before, but I think the rise in cases is due to better detection. We now have the tools to easily diagnose and test for celiac."
Myth 2: Celiac disease is a childhood condition patients outgrow.
Not true. Years ago, celiac was thought to affect only children because symptoms appeared to lessen in severity as some patients moved into adolescence or adulthood. But this theory was soon disproved, as symptoms worsened in many of those same individuals later in life.
"Once the gene is triggered on, you don't grow out of it."
The condition is hereditary. Two genes cause celiac disease and carrying just one of them puts a person at risk for developing celiac disease. "A physical or emotional stressor needs to trigger that gene 'on' for the disease to develop," says Lee, "but there's no "off" switch. Once the gene is triggered on, you don't grow out of it."
Myth 3: Celiac disease only affects the gastrointestinal (GI) system.
Not all patients with celiac disease have the classic GI symptoms, such as abdominal pain, bloating/gas, constipation, and diarrhea. That's one reason why the condition is so hard to diagnose; it affects people differently. More than 200 known celiac disease symptoms have been documented, and they occur all over the body.
"Because it's an autoimmune condition, celiac really is a multisystem disorder. Some people do get GI symptoms, but others get neurological symptoms like migraines or tingling in the hands and feet. Patients can also get brain fog or attention issues," says Lee.
"Some people do get GI symptoms, but others get neurological symptoms like migraines or tingling in the hands and feet."
Lebovits stresses that patients with celiac who don't experience GI symptoms or other obvious signs of illness should still adhere to a gluten-free diet to prevent future health problems.
"Even if you don't have a stomachache or bloating after eating gluten, gluten could still be causing an autoimmune reaction and damage to the intestine," says Lebovits. "And if that damage is occurring, malabsorption of certain nutrients such as calcium and vitamin D may occur, which can affect bone health and lead to bone loss."
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Anne Roland Lee, EdD, is assistant professor of nutritional medicine in the Department of Medicine and the Institute for Human Nutrition at Columbia University Vagelos College of Physicians and Surgeons.
Jessica Lebovits, RD, is a clinical dietitian at the Celiac Disease Center at Columbia University.
Benjamin Lebwohl, MD, is director of clinical research at the Celiac Disease Center at Columbia University and associate professor of medicine at the Vagelos College of Physicians and Surgeons and of epidemiology at the Mailman School of Public Health. He also is a gastroenterologist at NewYork-Presbyterian/Columbia University Irving Medical Center.
