For this article, I consulted with Stefano Guandalini, M.D., Founder and Medical Director, The University of Chicago Celiac Disease Center, and Professor of Pediatrics, Chief, Section of Gastroenterology, The University of Chicago Comer Children's Hospital. I interviewed him for this article.
Dr. Guandalini explains, “Celiac disease is often misdiagnosed or left undiagnosed for many reasons. Primarily, the disease has hundreds of symptoms that can mimic other problems, so if the possibility of celiac is not on the physician's radar, the tests are not ordered.”
The irony is that the screening test for CD is a simple blood test; nothing at all complicated. Maybe you’ve heard of celiac disease and believe you can’t possibly have it because:
1) You’re too old to have it, or 2) Your symptoms don’t include diarrhea or other digestive distress.
Here’s a surprise: Most people with celiac disease do not experience diarrhea or constipation. And one can develop this disorder at any age, from nine months to 90 years old.
Dr. Guandalini continues, “The underlying issue, of course, is that physicians in the U.S., until very recently, were taught that celiac disease was very rare, which we know is incorrect. It is part of our mission to re-educate medical professionals about celiac disease in hopes of raising awareness and diagnosis rates.”
The current estimate is that about one out of 100 people have CD. Most people who have the condition don’t have symptoms. But when they do, it’s typically several years before the correct diagnosis is made.
The University of Chicago Celiac Disease Center states: Most physicians learned during medical school that celiac disease was so rare they would never see a patient with symptoms in their entire medical career. Lectures on celiac disease in medical schools, even today, are few and far between.
When your doctor was in medical school, he or she may have heard a 20-30 minute celiac disease lecture during four years of classes. Medical textbooks still contain outdated information.
This is changing, however. More and more doctors are alert to the possibility of celiac disease in a patient presenting with interesting symptoms, but unfortunately, this still isn’t the rule.
When I saw a doctor for my sudden onset of diarrhea which wasn’t resolving, she immediately ordered the blood test for CD (which was negative).
If you’re feeling ill and run-down and have been diagnosed with depression, anxiety, chronic fatigue syndrome or anemia, request a blood test for celiac disease, which can cause fatigue, psychiatric issues and anemia.
Over 200 symptoms are associated with this condition, including muscle cramps, a skin rash, dental enamel problems, sores in the mouth and tingling/numb legs and feet.