Celiac disease is not uncommon, affecting about 1% of the population in the United States and around the world, but the biggest barrier to patients receiving treatment is practitioners’ failure to recognize the condition, said Dr. Peter H.R. Green, director of the celiac disease center at Columbia University, New York.

There’s a very low rate of diagnosis in the United States, compared with other countries, according to Dr. Green. Only about 18% of U.S. patients with celiac are properly diagnosed. Physicians need to be more aware of the condition as it is on the rise. The incidence of celiac disease has increased four- to fivefold over the past 50 years, he said.

Dr. Peter H.R. Green

Dr. Peter H.R. Green

“Patients, when they get diagnosed, have often had a long history” of symptoms, Dr. Green said at Digestive Diseases: New Advances. “They say, ‘Why didn’t my doctor think of this? I’ve been complaining so long,’ etc.”

The main symptoms of celiac disease are diarrhea or bloating, iron-deficiency anemia, osteoporosis, fatigue, hypothyroidism, and/or weight loss. “The host of presentations is very great, which is one of the factors that may be contributing to the low rate of diagnosis. Almost anyone you could think of could have celiac disease based on these symptoms,” he said.

Once a physician considers celiac disease as a possible diagnosis, the rest is easy, he said. The most definitive blood test is an anti-tissue transglutaminase IgA, which is available through most laboratories. If the test results show antibodies toward gluten, or if it’s inconclusive, it should be followed up by an intestinal biopsy to confirm the diagnosis. From there, patients could start a gluten-free diet.

Although biopsy rates have been increasing, as recently as 2009 only 51% of individuals undergoing upper endoscopy with signs and symptoms of celiac disease had had a small-bowel biopsy, judging from findings from one of his recent studies, Dr. Green reported. Patients who are less likely to have a biopsy are nonwhite or male or have weight loss as the presenting symptom. More recent studies indicate that several biopsies should be taken, including four to six from the descending duodenum and two from the duodenal bulb, the portion closest to the stomach.

Once diagnosed, patients should be managed in a center that specializes in celiac disease and should be referred to a knowledgeable dietitian to learn what to avoid and what to eat. “People will just eat the same stuff because they think it’s safe,” Dr. Green said.

Antibody levels should be checked again 6 and 12 months after starting a gluten-free diet to ensure that antibodies normalize. Levels of iron, folate, and B12 also should be checked, he said, as well as bone density and thyroid function. In addition, patients should be encouraged to follow up with their physician at least annually. Whether patients need a follow-up biopsy remains controversial. “We think they do, but maybe in 2-3 years, when you can assess the effects of the diet,” he said.

Some patients have true celiac, while others may have a wheat allergy or just a gluten sensitivity. There has been an increased interest in gluten-free diets not just among those affected with celiac disease but by people who think it will help with weight loss or by those who think it’s healthy. “In fact, a gluten-free diet is not healthy,” Dr. Green said. “It’s low in fiber, low in B vitamins, high in heavy metals, and there is some concern about toxins in corn.” Patients should make sure to have a blood test for celiac disease before embarking on a gluten-free diet. Some patients studied who did not have celiac had diagnoses such as bacterial overgrowth in the small intestine; intolerance to fructose, lactose, or other foods; and microscopic colitis.

Risk factors for developing celiac disease include being born via cesarean section, taking proton pump inhibitors or antibiotics, or having a history of GI infections such as rotavirus or campylobacter, although it’s unclear why the disorder can occur at any age, he said at the meeting, which was held by Global Academy for Medical Education and Rutgers, the State University of New Jersey. Global Academy and this news organization are owned by the same company.

Dr. Green reported no relevant financial disclosures.