People with celiac disease, who are extremely vigilant about not ingesting gluten, may perceive that their quality of life is reduced, according to a new study.

Current guidelines for managing celiac disease call for “lifelong adherence to a strict, gluten-free diet”, study leader Randi Wolf of Columbia University in New York City told Reuters Health in an e-mail.

But the “extreme vigilance” required to follow a strict gluten-free diet may also have negative consequences, both physically and emotionally, Wolf said.

“We absolutely must continue to advocate for a strict gluten-free diet with the caveat that, for some, such hypervigilance comes at a cost that needs to be supported and addressed,” Wolf said.

Celiac disease is an autoimmune disorder that affects roughly one of every 100 people in the US People with celiac disease must avoid foods and medications that contain the gluten protein from wheat, barley or rye. Ingesting these proteins causes their immune system to attack their intestines, resulting in malnutrition and a host of other problems.

As reported in Digestive Diseases and Sciences, Wolf’s team studied 80 teens and adults with celiac disease, most of whom had been diagnosed at least five years earlier. The participants spoke with the researchers in person and on the phone for a total of three times over the course of a month.

Participants answered questions about dietary adherence, vigilance, energy levels, knowledge about gluten-containing foods and quality of life issues related to celiac disease. Based on their answers, they were classified as being “extremely vigilant” or “less vigilant”.

Twelve of the 50 adults and seven of the 30 teenagers in the study were considered extremely vigilant.

“The ‘extremely vigilant’ adults” — that is, those who only used celiac-friendly restaurants, asked thorough questions when eating out, examined all food, medication, supplement labels, avoided all potential sources of cross-contamination in the home, etc. – “had significantly lower quality of life scores compared to their less vigilant counterparts”, Wolf said.

For those “extremely vigilant” patients, “having supportive family and friends, cooking at home [as opposed to eating out] and using Internet sites and apps to facilitate gluten avoidance were particularly prevalent strategies to maintain a strict gluten-free diet”, she said.

The study cannot prove that being hypervigilant was the cause of participants’ worse quality of life.

Wolf recommends ongoing involvement of a registered dietician, beyond the initial diagnosis.

“Conversations to promote both dietary adherence and support quality of life issues will take time and cannot be done in a single visit,” she said. “We also need to explore interventions that could be combined with visits to a dietician that may help reduce some of the . . . anxiety and stress.”

“We plan to pilot test various interventions, such as gluten sensor devices, cooking classes, and online discussion tools, to learn about their potential utility of promoting a strict gluten-free diet, but also maximising the quality of life,” said Wolf.

Dr Benjamin Lebwohl, a gastroenterologist with Columbia University who was also part of the study team, said physicians need to promote a strict gluten-free diet for the control of symptoms and improved long-term health outcomes.

“But we must acknowledge that tightening the screws on gluten avoidance may come at a cost in terms of quality of life. It is easy for us to tell patients to take additional precautionary measures, but such measures may take a toll on the patient,” he said.

Shayna Coburn, a psychologist with the Children’s National Health System Celiac Programme, said the study is thought-provoking and highlights the struggle to balance safety and quality life for teens and adults with celiac disease.

These findings remind us to not just encourage people to follow a strict gluten-free diet, but also to pay attention to their emotional and social needs, said Coburn, who was not involved in the study.

“To achieve this, we need medical care that includes not only doctors, but dietitians and mental health professionals to support people in this challenging, lifelong diet,” she said.