An estimated 1 percent of the US population has celiac disease, but about 80 percent of those remain undiagnosed or misdiagnosed. Undiagnosed celiac disease leads to increases in anemia, infertility, some types of cancer, other autoimmune diseases and more. It takes patients an average of six years to receive a celiac disease diagnosis.
Celiac disease is a clinical chameleon, which means many of the symptoms of celiac disease mimic those of other diseases. This makes diagnosis challenging. Celiac disease can affect almost all symptoms and parts of the body, and there are more than 300 potential related symptoms. Due to this, many people with celiac disease are misdiagnosed with diseases such as irritable bowel syndrome (IBS), Crohn's disease, intestinal infections, lactose intolerance and depression. Doctors don’t always know when to look for a celiac disease diagnosis and can be reluctant to do the required testing, despite the fact that the anti-tissue transglutaminase immunoglobulin A (tTG IgA) test is a reliable first step toward celiac disease diagnosis.
The data collected in Go Beyond Celiac will enable the medical community understand the varied symptoms and experiences of celiac disease patients. This information can then be used by healthcare professionals. It may help them understand when they should test for celiac disease, ultimately leading to an increase in the diagnosis of celiac disease. That means that the more than eight out of ten patients who don’t know they have the condition will be able to get a celiac disease diagnosis and the care they need.