I attended the American College of Gastroenterology annual meeting this Fall in Philadelphia, PA. Spending time focusing on the celiac disease talks and research presented at the meeting was exciting. ACG focuses on important GI research and education over the past year. The meeting is always a fantastic update. I made sure to review everything the meeting had to offer in regards to celiac disease.
Oral presentations at ACG focus on the most important factors surrounding specific GI health problems. In regards to celiac disease, the main oral presentation on the topic “The Underdiagnosis of Celiac Disease – Screening and Management” was given by Dr. Alberto Rubio-Tapia at the Cleveland Clinic. Focusing on the recently published guidelines on celiac disease, he emphasized the fact that many celiacs remain undiagnosed. He reviewed situations where it is important to consider screening with bloodwork and endoscopy..
A few highlights I took away from the presentation:
- Most cases of Celiac disease are not diagnosed. While 0.7% of people worldwide have celiac disease, 83-95% of people who have celiac do not even know they carry the diagnosis.
- Celiac is a worldwide problem. It is not a disease only seen in patients with European heritage. The highest prevalence of celiac disease is 5.6% in Northern Africa. 3% of Americans of Punjab Indian decent have celiac disease.
- Doctors need to be looking for cases. Screening for celiac disease with blood testing is indicated for a variety of non-GI related reasons. “Look beyond the gut”. Given the number of undiagnosed cases, it is critical to be thorough and consider celiac disease as a potential cause of unexplained health issues. Anemia, Irritable Bowel Syndrome, and type 1 diabetes are examples of reasons to screen for celiac.
- While universal screening (ie testing everyone) for celiac disease is not advised in the guidelines, Italy has mandated this by law with some success in detection.
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Clearly we need to recognize more case of celiac through better screening. Aside from the oral presentation on the under diagnosis of celiac, there were several poster presentations on other celiac related topics. Topics included: standardization of lab testing for celiac testing, quality initiatives to improve health maintenance, and research into the social and emotional toll of celiac disease on a patients quality of life.
Much of the research came from patient supplied information in the Go Beyond Celiac and the iCure Celiac patient registries. I will post further details on some of this important research in my next entry.