Celiac.com 02/22/2010 - Celiac disease affects approximately 1 in 100 people in the United States. Celiac disease is a genetic disease and the only known cure is a gluten-free diet for life. While most people with celiac disease experience a relief from symptoms while on a gluten free diet, studies are showing an increased mortality rate in patients with the disease compared to the general population.
Out of the 21 papers that have been published over the last 25 years addressing the issue of celiac and mortality rates, the studies show conflicting results, ranging from a 0.52% (decrease) to 3.9% (increase) in mortality rates for patients with celiac compared to the general population. The reasons for the conflicting results are based on the fact that the papers vary vastly from each other, and while some studies are location based or population based, others are cohort based. So for the sake of this particular study, celiac patient's have been categorized into four different groups: symptomatic celiac disease, dermatitis herpetiformis, unrecognized celiac disease and refractory celiac disease. Because these groups of celiac patients differ greatly, it is necessary to analyze their mortality rates individually.
Dermatitis herpetiformis is a gluten agitating blistering of the skin which has frequently been associated with celiac disease. Four studies have been conducted on the mortality rates of celiac patients with dermatitis herpetiformis and found that mortality rates did not increase for them compared to the general public.
Four studies were also conducted to determine the mortality rates of people with unrecognized, and therefore untreated celiac disease. Two of the studies showed no increase in mortality, while the other two (including the United States study) showed a considerable increase in mortality of people with unrecognized celiac disease. The reason for the conflicting evidence can be merited to the difficulty in obtaining non-biased, random subjects for the study.
Refractory celiac disease is known as an inexorable form of celiac disease. Symptoms associated with refractory celiac do not improve with a gluten-free diet. Refractory celiac disease is classified into two types: type I and type II. Type II refractory celiac patients are inclined to develop enteropathy associated T-cell lymphoma and have a lower survival rate than type I patients. While the 5 year survival rate for type I patients is between 80%-96%, those with type II refractory celiac only had a 44%-58% chance of survival which dropped to 8% in those patients that developed enteropathy-associated T-cell lymphoma.
Other studies of mortality rates in celiac patients have indicated that there is a actual amount of gluten that one can exceed which will eventually lead to complications with celiac disease. Thus, if a person continually consumes more gluten than can be processed by their body, usually as a result of malabsorption associated with celiac disease, it is more likely to activate refractory celiac disease and lymphoma in some individuals.
Overall these studies have aided in proving that compared to the general population, the risk of mortality rates are increased for celiac patients. While mortality rates decreased over time starting from the point of celiac diagnosis, mortality rates tended to increase significantly in patients who did not adhere to a strict gluten free diet. Standard mortality rates doubled for patients who were unlikely to stick to a gluten free diet, and for patients that definitely did not follow a strict gluten free diet, the mortality rate was six times higher. Therefore, if you have celiac disease, early diagnosis and strict adherence to a gluten free diet can be a life-saver, and is very likely to extend and improve your quality of life.