The following is an article by Roman Bystrianyk that appeared in the Health Sentinel, March 4, 2005. It discusses how many adults who were diagnosed as children stop following the gluten-free diet as adults, and the many serious and potential risks of this non-compliance.

Following Celiac Disease into Adulthood

Celiac disease is a digestive disorder that causes damage to the small intestine, which results in interference with nutrient absorption. This disorder occurs from an immune system response against the protein gluten. Gluten is a protein found in barley, oats, rye, wheat, and wheat derivatives.

A study in the American Journal of Gastroenterology details a 28-year follow-up of 50 adults that were diagnosed at childhood with celiac disease.

The authors found that only 50% of the individuals were following a gluten-free diet. Another 18% were partially compliant and 32% were not adhering to the diet. They also found that 83% of the women and 21% of the men were iron deficient. Checking their Bone Mineral Density or BMD using dual energy X-ray they found that 32% had subnormal bone density, 29% had osteopenia, and 3% had osteoporosis.

Adhering to a gluten free diet is extremely important for people with Celiac disease. The negative consequences of “iron deficiency, and loss of BMD are well recognized complications/implications of dietary noncompliance, whereas gluten exclusion effectively avoids/reverses these effects.”

Other more serious long-term consequences can occur with gluten ingestion by celiac patients. There is an increased risk of malignancy – lymphoma and gastrointestinal malignancies in particular, increased incidence of autoimmune disorders, and risk of low-birth-weight babies.

The authors conclude that, “patients who are diagnosed with celiac disease in childhood are frequently lost from active follow up in adulthood. One-third of these individuals are not compliant with diet; in those that do comply, the main motivating factor is avoidance of symptoms rather than avoidance of complications. Therefore, continual formal review in adulthood is desirable. These young adults have a worrisome prevalence of iron deficiency and low BMD that are preventable and treatable. While the risk of autoimmunity needs further study, the development of malignancy can be offset by gluten restriction.”

SOURCE: American Journal of Gastroenterology, December 2004