Celiac disease is a tricky medical disorder. When left untreated, up to 300 different symptoms can occur, and the elapsed time from the onset of those symptoms to an actual diagnosis averages about ten years.
Nancy Lapid, the managing editor for Reuters Health, and Dr. Daniel Leffler, the director of clinical research at the Celiac Center at Beth Israel Deaconess Medical Center in Boston, both spoke with “Take Care” about this serious disease, which many people have only heard of in recent years.
Click 'Read More' to hear our interview with Nancy Lapid and Dr. Daniel Leffler.
Lapid can attest to the uncertainty that shrouds celiac disease. During her adolescent years, she began to encounter a number of odd symptoms—she was underweight, anemic and suffered from chronic sinus infections and stomach aches. Test after test was performed, and doctors couldn’t quite place what was wrong. It wasn’t until 1999, when Nancy was 41 years old, that she was finally diagnosed with celiac disease.
“All of these little clues sort of fell into place,” Lapid said. “It made sense.”
While the length of time it took for Lapid to receive her diagnosis may seem unfortunate, her story is actually “quite typical” according to Dr. Leffler.
“It’s not because people aren’t talking to their doctors about it, it’s because celiac disease just hasn’t been on the radar of American physicians, historically,” Leffler says.
Celiac disease is classified as an auto-immune disorder in which gluten, one of the main proteins found in wheat and related grains, is able to trigger a reaction that makes the body attack itself. The disease originates from the intestines, and therefore many of the manifestations are located there. This can often cause anemia and gastrointestinal symptoms as a result. Antibodies are naturally created, but in the case of celiac disease, these antibodies actually target certain parts of the body, which can cause even more serious symptoms such as neurologic abnormalities in the brain.
One of the reasons celiac disease has received much more attention now than in the past is the improvement of tests to diagnose the disease in an easier fashion. In the 1970s, the only way to diagnose the disease was through an intestinal biopsy. More recently, though, blood tests have been developed that have a 95 percent accuracy rate in diagnosing the disease. Still, Dr. Leffler believes an endoscopy biopsy of the intestines still remains the gold standard for diagnosing celiac disease, as it may be the only way to prevent false diagnoses.
“It’s a lifelong condition, so we really try to avoid errors in diagnosis whenever possible,” says Dr. Leffler.
Recent studies show that approximately one percent of the general United States population has celiac disease. According to Dr. Leffler, only about 15 percent of that number are currently diagnosed, causing him to believe that there are roughly 2.5 million Americans living with the disease without knowing it.
“There’s a real concern that there is a significant public health impact to missing all these diagnoses,” he says in reference to the increased risk of things such as cancer and osteoporosis in who have celiac disease.
According to Dr. Leffer, the only current treatment for celiac disease is a strict adherence to a gluten-free diet. While this is often considered a tough diet due to the large prevalence of gluten in all kinds of foods, Dr. Leffler says that it often results in complete healing and resolution of symptoms in the majority of patients. Patience is very important to have when dealing with this kind of diet, though, says Dr. Leffler, as a complete healing may take years to occur.
Nancy Lapid, who has adhered to a gluten-free diet since her diagnosis, can attest to the difficulties of it. “The first year is the hardest,” she says. She suggests informing those closest to you about your disease, and to speak openly about what you can and cannot eat. She also recommends joining some sort of support group, whether it’s at a local hospital or online on social media like Facebook.
A gluten-free diet may not sound like the easiest endeavor, but according to Lapid, it is worth it. “It’s a challenge,” she says, “but you feel so much better after it.”