Memo to people with celiac disease, and their doctors: Not eating gluten is definitely a top priority – but so is maintaining quality of life.  

That’s one of the take-home messages of a study led by TC’s Randi Wolf, Associate Professor of Human Nutrition, that has just been published in print by the journal Digestive Diseases and Sciences.  The study, titled “Hypervigilance to a Gluten-Free Diet and Decreased Quality of Life in Teenagers and Adults with Celiac Disease,” first appeared online in February.

“There are potential negative consequences of hypervigilance to a strict gluten-free diet,” write Wolf and her coauthors (a group that includes Celiac Disease Center of Columbia University faculty and TC students Jennifer Cadenhead and Chelsea Amengual). “Clinicians must consider the importance of concurrently promoting both dietary adherence and social and emotional well-being for individuals with CD.”

Celiac disease is a genetically acquired autoimmune disorder in which the intestine becomes inflamed after the ingestion of gluten, a protein found in wheat, barley and rye. There may be no symptoms at all or severe symptoms which can range from abdominal pain to infertility or anemia, and continued ingestion of gluten can eventually cause intestinal damage and increase risk for osteoporosis and certain cancers. Though the condition receives much less attention than irritable bowel syndrome, it is more common, currently affecting one in 133 people – a five-fold increase since the 1950s.  

In the study led by Wolf, the researchers surveyed 50 adults and 30 teens with biopsy-confirmed celiac disease about their dietary adherence and vigilance, energy levels, knowledge and what they saw as facilitators and barriers to compliance with a strict gluten-free diet. The participants were divided into two groups. The first, classified as “hyper-vigilant,” carefully monitored their diets to avoid intentional and unintentional gluten exposure, dined whenever possible in gluten-free restaurants, queried wait staff before eating in conventional restaurants, prepared food at home for non-household consumption and paid close attention to food labeling. The second cohort was less meticulous in monitoring food intake both inside and outside the home. The team then asked participants to measure qualify of life benchmarks such as low energy, anxiety and stress.

Reports on overall life quality were relatively positive. The adult participants on average rated their quality of life at 74 on a scale of 100. Using the same scale, the teens rated their life quality at 70.

But hyper-vigilant participants had lower quality of life and were “constantly worried about cross contamination, gluten free menus, the need to ask questions, planning ahead and always feeling the need to advocate, limited restaurant choices, dismissive or uninformed wait staff and dismissals of a gluten-free diet that undermines its seriousness,” Wolf told a global audience of academics, physicians, researchers and pharmaceutical industry leaders who gathered in early March for the symposium  “Celiac Disease, Now and the Future,” hosted by the Celiac Disease Center at Columbia University.

“You have to constantly be aware, constantly advocate and constantly be prepared. Checking restaurants and keeping other people educated … is exhausting.”
– Celiac study participant

“You have to constantly be aware, constantly advocate and constantly be prepared. Checking restaurants and keeping other people educated … is exhausting,” a study participant complained.

The more conscientious patients also complained of missing foods such as pizza, pasta and expressed consternation at the extra cost of gluten-free foods.

Wolf reported that teens meanwhile expressed anxiety about posing questions about restaurant food content in the presence of friends.

One teen shared his mother’s habit of contacting restaurants in advance of his patronage and even going so far as to visit commercial kitchens to prevent cross-contamination of her son’s menu choices. 

Interestingly, Wolf’s team found higher quality of life levels among the gluten-intolerant who primarily cook for themselves.

“I cook, so I don’t have to worry,” one participant told investigators.

Wolf’s study clearly has resonated within both the medical community and among patients. An accompanying editorial in Digestive Diseases and Sciences, titled “Eliminating Dietary Gluten: Don’t Be a ‘Glutton for Punishment,’” says that the study “highlights the need for finding balance between adherence to a gluten-free diet and maintaining a high quality of life” and calls for further “prospective longitudinal studies to test the level of dietary adherence that can achieve the treatment goals of CD while balancing quality of life and patient satisfaction.”

And in Beyond Celiac, an advocacy newsletter for people with the disorder, Julie Kennedy, a celiac patient whose oldest daughter also has the condition, said, “I'm glad researchers did this study. When my doctor diagnosed me, he said, 'Go on the diet and I'll see you in a year.’ People need to understand it is not as easy as it sounds.”

The study has meanwhile spurred further areas of inquiry from TC graduate student researchers who are now developing platforms, including video, to address and improve the quality of life issues emerged in the project outcomes.

Additional areas of concentration are focusing on “theory-based cooking” to bolster life quality, helping those who may be at risk for an eating disorder as a result of their vigilant diet, as well as the family dynamic in gluten-free living.

“We have very little research on the effects of quality of life on entire families. How does it affect siblings and grandparents and others living in a household?”
– Randi Wolf

“We have very little research on the effects of quality of life on entire families,” said Wolf. “How does it affect siblings and grandparents and others living in a household?”

Wolf hopes the findings of the vigilance project will encourage celiac disease sufferers to stay on top of their condition. Data shows that just 27 percent of teens and 17 percent of adults follow up a diagnosis by consulting regularly with a professional dietitian – a critical part of the celiac disease management team.

“That is concerning,” she said. “Because you can’t talk about adherence and all there is to learn about the diet in a single visit. And conversations to talk about full adherence and quality of life take time.”

— Steve Giegerich