Celiac Disease Death Rates Increase Dramatically for the Undiagnosed and Untreated
In 1994 I was diagnosed with celiac disease, which led me to create Celiac.com in 1995. I created this site for a single purpose: To help as many people as possible with celiac disease get diagnosed so they can begin to live happy, healthy gluten-free lives. Celiac.com was the first site on the Internet dedicated solely to celiac disease, and since then it has become an invaluable resource to people worldwide who seek information about celiac disease and the gluten-free diet.
In 1998 I created The Gluten-Free Mall, Your Special Diet Superstore! which was also another Internet first—it was the first gluten-free food site to offer a shopping cart-style interface, and the ability for people to order gluten-free products manufactured by many different companies at a single Web site.
I am also co-author of the book Cereal Killers, and founder and publisher of Journal of Gluten Sensitivity.
Lancet 2001; 358: 356-61
Celiac.com 08/10/2001 - In line with past studies on the mortality rate of people with celiac disease, the results of a new study conducted by Dr. Giovanni Corrao (Cattedra di Statistica Medica, UniversitĂ di Milano-Bicocca, 20126 Milano, Italy), et. al., indicate that the death rate among people with celiac disease is double that of the normal population. The prospective cohort study examined 1,072 adults who were diagnosed with celiac disease between 1962 and 1994, and their 3,384 first-degree relatives. The mortality rates by 1998 among both groups were compared to that of the normal population.
Their findings show that 53 people in the celiac disease group died compared with the 25.9 deaths that were expected (Standardized Mortality Ratio - SMR). Unlike past studies, however, this one also looked for different patterns of clinical presentation of the disease. For example, the results indicate that within three years of diagnosis there was a significant increase in the mortality rate for those who presented symptoms of malabsorption. This same increase was not seen in those who were originally diagnosed because of minor symptoms, or via an antibody screening. The SMR also increased when there was a delay in diagnosis, and when a gluten-free diet was not followed. Non-Hodgkin lymphoma was the main cause of death, and no excess in mortality rate was seen in the groups first-degree relatives.
Conclusion: Prompt diagnosis and dietary treatment will decrease the mortality rate of people with celiac disease. More studies are needed regarding asymptomatic people with celiac disease and their risk of intestinal lymphoma.
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