Will “Just a Little” Gluten on 1 or 2 Outings a Year Harm a Teen With Celiac Disease?

September 21, 2009

My teenaged patient has celiac disease and type 1 diabetes, both of which are well controlled. The patient’s mother is concerned that her son’s risk of a bowel malignancy or other celiac-related complication later in life would be significantly increased if he ingested small amounts of gluten for 5 to 7 days while at camp or on a church trip. As a result, the youngster is not allowed to participate in such outings, since it is not always possible to pack one’s own food for such trips and the available food options are usually limited.

My teenaged patient has celiac disease and type 1 diabetes, both of which are well controlled. The patient’s mother is concerned that her son’s risk of a bowel malignancy or other celiac-related complication later in life would be significantly increased if he ingested small amounts of gluten for 5 to 7 days while at camp or on a church trip. As a result, the youngster is not allowed to participate in such outings, since it is not always possible to pack one’s own food for such trips and the available food options are usually limited.

Is it reasonable for me to advise the patient and his mother that once or twice a year some conservative ignoring of the celiac-related gluten restrictions he normally observes are reasonable and of no likely clinical consequence?

- Steven D. Atwood, MD
Springfield, Mo

Many patients with celiac disease, although they may have few symptoms, have chronic intestinal damage and malabsorption of nutrients and vitamins. Iron deficiency and bone loss (lowered bone density, osteopenia, and osteoporosis) often occur early, and we have found that half of adults with celiac disease who are on apparent full gluten exclusion diets nonetheless have malabsorption and vitamin deficiencies-especially deficiency of vitamin D.

As little as 50 to 100 mg of gluten (the amount found in just a few crumbs of bread) can perpetuate the toxic intestinal reaction. Although I agree that the risk of malignancy is probably not increased by occasional exposure, I believe that the greater problem is maintenance of normal nutrient and vitamin absorptive capacity.

Treating vacations as a time when dietary restrictions can be relaxed suggests to patients and their families that avoiding gluten exposure is not really that important. However, it is the only established therapy for the disease. Thus, every effort should be made to keep patients with celiac disease gluten-free, especially in the vulnerable childhood and adolescent years when maturation is important and short stature may be an issue.

Far and away the best approach in situations such as the ones you describe is to make sure that the leaders of youth group outings are aware of the lifelong need of participants with celiac disease to avoid wheat, barley, and rye-and of the heightened importance of this regimen during the growth years. We have worked with such groups and with school cafeterias to facilitate the achievement of gluten-free status for affected children, and they do become enlightened.

- Gary M. Gray, MD
Professor of Gastroenterology, Emeritus
Stanford University School of Medicine
Director, Celiac Management Clinic
Stanford University Hospital and Clinics
Stanford, Calif