Q: A recent study states that hypervigilance to a gluten-free diet decreases your quality of life. Some people seem to think that it is OK to be more relaxed about following the GF diet. What is your advice?
The gluten-free diet is the only known treatment for celiac disease. Since we know that symptoms from gluten exposure are not necessarily related to the level of damage of the villi or to the antibody level (IgA-tTG or DGP), we cannot base how closely we should follow the diet on how we feel after ingesting a certain food, drink, medication or supplement. For that reason, we are asked to follow a strict gluten-free diet to help protect us from gluten exposure and to decrease the risk of long-term complications. . The recent paper “Hypervigilance to a Gluten-Free Diet and Decreased Quality of Life in Teenagers and Adults with Celiac Disease” surveyed 80 teens and adults in the following categories: quality of life, degree of dietary adherence and vigilance, energy level, and knowledge and helpful strategies vs barriers to following the gluten-free diet. Unlike papers in the past that have found higher quality of life with stricter adherence, these researchers found overall that those patients described as “extremely vigilant” reported a poorer quality of life than those described as “less vigilant.”
This paper brought to light several important points about gluten-free diet adherence: It identified important and successful strategies to stay gluten-free, such as supportive family and friends, better access to gluten free foods, apps and internet sites and more reliance on cooking at home. And it highlighted the need for ongoing nutrition consultations with a skilled dietitian who can support those for whom hypervigilance comes at a quality of life cost and as a burden. The researchers hope their paper helps to develop nutrition education efforts using these strategies mentioned above that encourage a strict gluten-free diet while at the same time allowing for maximum quality of life in people with celiac disease. Personally and professionally, I fully agree!
Wolf RL, Lebwohl B, Lee AR, Zybert P, Reilly NR, Cadenhead J, Amengual C, Green P. Hypervigilance to a Gluten-Free Diet and Decreased Quality of Life in Teenagers and Adults with Celiac Disease. Digestive Diseases and Sciences. Dig Dis Sci. 2018 Jan 31. doi: 10.1007/s10620-018-4936-4. [Epub ahead of print]
Note: This information is provided by NCA and Melinda Dennis, NCA's Senior Consulting Dietitian. This information is meant for educational purposes and is not intended to substitute for personalized medical advice or replace any medical advice provided directly to you by your health care provider. This information can be printed and used in consultation with your physician or dietitian. No liability is assumed by NCA, Ms. Dennis or her nutrition consulting service Delete the Wheat, LLC. by providing this information..