On March 28, 2017, the U.S. Preventive Services Task Force (USPSTF) released the following recommendation about screening for celiac disease:
“The USPSTF concludes that the current evidence is insufficient to assess the balance of benefits and harms of screening for celiac disease in asymptomatic patients.”
For decades, Celiac Disease Foundation (CDF) has advocated for more widespread diagnostic testing for symptomatic celiac disease patients and their first-degree family members (parent, child, sibling) to ease much of the needless suffering caused by the disease. There is nothing in the USPSTF statement that contradicts our position. What the USPSTF argues is that current research is insufficient to recommend screening for asymptomatic patients, which is not a surprise because the totality of research on screening asymptomatic patients is scant. Thus, the conclusion of the USPSTF is reasonable. CDF, through its iCureCeliac® patient registry, advocacy initiatives, and strategic investments, strongly supports more research on celiac disease, including this specific question of screening asymptomatic patients.
If you would like a more nuanced understanding of our position, we recommend that you read the JAMA editorial on the USPSTF recommendation authored by our Medical Advisory Board member, Joseph Murray, MD, and his colleague, Rok Seon Choung, MD. You can access the editorial here.
Make no mistake, however, there is a tremendous amount of unnecessary patient suffering associated with undiagnosed celiac disease that can be mitigated through diagnostic testing. The latest research shows that the majority of individuals with celiac disease have not been diagnosed. In addition, a patient who has been diagnosed with celiac disease has suffered with symptoms, on average, for 6-10 years before receiving the correct diagnosis. There are over 200 known symptoms of celiac disease, most of which do not involve stomach or gastrointestinal discomfort. While research continues on the efficacy of screening asymptomatic individuals for celiac disease, we know that much of the persistent suffering of patients could be eased if more physicians, especially those in primary care, test:
- Patients who have symptoms known to be associated with celiac disease
- Patients whose family history indicates a risk of developing celiac disease
To that end, Celiac Disease Foundation has developed several initiatives aimed at educating healthcare providers in order to improve the diagnosis rate. Through a partnership with the USC Keck School of Medicine, CDF launched a pioneering celiac disease training program for Internal Medicine residents to teach primary care physicians to identify and test for celiac disease in symptomatic patients and their family members. If successful, this training module will be shared with Internal Medicine Residency Programs across the country. Additionally, CDF, in partnership with the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN), has developed a Clinical Guide for Pediatric Celiac Disease that will be released in the coming weeks. This decision tree software will assist healthcare professionals in the diagnosis and management of celiac disease patients and their family members, thus improving the quality and effectiveness of care.
CDF is committed to creating resources and tools for provider education to improve the diagnosis rate until 100% of our celiac disease population is diagnosed. At the same time, we will continue to support and monitor research on the efficacy of screening asymptomatic patients for celiac disease, as well as research to improve diagnostic tools.
The U.S. Preventive Services Task Force Recommendation on Screening for Asymptomatic Celiac Disease