Hypervigilant celiac disease patients at risk for increased anxiety and fatigue.
By Amy Ratner, Medical and Science News Analyst
Hypervigilance about the gluten-free diet can lead to reduced quality of life for adults and teenagers, a new study by Columbia University researchers found.
“Extreme vigilance to the gluten-free diet may increase symptoms, such as anxiety and fatigue and, therefore, lower quality of life,” researchers from the Department of Health and Behavior Studies and the Columbia University Celiac Disease Center wrote. “In other words, there may be a cost to hypervigilance for some individuals with celiac disease.”
Both dietary adherence and social and emotional well-being need to be addressed by healthcare providers, the study, published in the journal, Digestive Diseases and Sciences,concludes.
“We absolutely must continue to advocate for a strict 100 percent gluten-free diet for individuals with celiac disease,” said lead study author Randi Wolf, Ph.D., associate professor of human nutrition. “ I think what our research showed, was that, for some, such hypervigilance may come at a cost that needs to be supported and addressed concurrent with following a strict gluten-free diet.”
The 50 adults and 30 teenagers who participated in the study were categorized as being “extremely vigilant” and “less vigilant” based on a review of gluten exposure detailed through three days of diet recollection and phone interviews by nutrition experts.
Participants were considered “extremely vigilant” if they: reported no evidence of accidental or intentional gluten ingestion, would only eat at celiac-friendly restaurants, asked thorough questions when eating out, called each manufacturer before eating a new food or taking a new medication, kept a completely gluten-free home to avoid potential for cross-contamination, or seemed to be take a lot of extra precautions to avoid cross-contamination. Those who were “less vigilant” may have had evidence of hidden sources of gluten on their diet recalls, reported that they don’t always ask thorough questions when eating out, checked labels on some but not all medications or products, or may have reported intentional gluten consumption on occasions.
Julie Kennedy, who has, and is the parent of child with, celiac disease, said she would have been considered hypervigilant if she had participated in the study. Despite her vigilance, when they eat out, she and her daughter can never really relax and enjoy themselves, and they feel the anxiety the researchers found. She agrees it reduces their quality of life.
“What the research shows is that we cannot assume the gluten-free diet is the complete answer,” said Kennedy, a member of the Beyond Celiac Patient and Family Advisory Council. “Stress and anxiety are very damaging, so what risks are we developing?”
When weighing the consequences of a minute amount of gluten getting into the diet versus the emotional toll of always worrying about food, Kennedy wondered, “In the long term, which is worse?”
While it’s universally accepted that celiac disease patients need to eliminate harmful gluten from wheat, barley and rye from their diets, the particulars of achieving a gluten-free diet are less clear. In the United States, foods labeled gluten-free have to contain less than 20 parts per million. Research has shown that up to 50 milligrams of gluten per day from cross-contact is considered safe for most people with celiac disease.
But celiac disease patients have to make choices every day about the risk of gluten exposure from the gluten-free products they purchase, to the restaurants they frequent, to the social settings where they feel safe eating.
The Columbia study focused on the association between quality of life, energy levels, adherence to and knowledge about the gluten-free diet. Participants were diagnosed with celiac disease through an intestinal biopsy and had been on the gluten-free diet for more than one year.
Adults who were hypervigilant had quality of life scores that were significantly lower than those who were less vigilant. Likewise, adults with lower energy levels reported significantly lower quality of life. Patterns were similar for teenagers. Meanwhile, hypervigilant adults were more knowledgeable about the gluten-free diet than those who were less vigilant.
Extreme vigilance that creates anxiety and stress may lead to low energy levels and fatigue, the authors wrote, but added that this relationship needs more investigation.
“The hypervigilance described in our sample, for example bringing their own dishes to restaurants or other homes and thorough and repeated questioning at restaurants, may come with a meaningful and relevant cost,” the study authors wrote.
They noted that the study’s findings conflict with previous research that has shown that better dietary adherence is associated with higher quality of life scores and suggested that the tools used to collect information on quality of life and dietary adherence might explain the difference. The Columbia study used celiac disease specific measurements and relied on nutrition professionals’ evaluations of vigilance compared to patients’ self-reported perceptions.
For example, the study says, one participant perceived herself to be extremely vigilant, reporting she never had gluten in the past month but went on to say she took gluten-containing croutons off her salad before eating it.
The potentially negative consequences of being extremely diligent about a strict gluten-free diet should lead healthcare providers to be aware of the importance of promoting both adherence to the diet and social and emotional well-being, the study concludes.
The authors called for ongoing involvement of a registered dietitian that continues beyond an initial visit at the time of celiac disease diagnosis. Only 16 percent of adults and about 27 percent of teenagers were seeing a dietitian at the time they were participating in the study. Most had no follow-up after diagnosis.
A recent Beyond Celiac study showed that more than one in four celiac disease patients diagnosed in the last five years have not had any follow-up care.
The National Institutes of Health recommends that celiac disease patients consult with a skilled dietitian and have continuous long-term follow-up by a multidisciplinary health team. “It appears these guidelines are rarely met among our participants,” the study says.
Dietitians need to develop ways to help celiac disease patients address difficulties in dining out. Seventy four percent of adults and about 87 percent of the teenagers in the study cited aspects of dining out as a barrier to adhering to the gluten-free diet. Desire to take advantage of increased restaurant options, combined with distrust of menus and ill-informed wait staff were reported as “considerable sources of frustration and anxiety.”
The study illustrates the critical need to develop and evaluate nutrition education strategies that promote increased adherence to the gluten free diet while at the same time taking care to maintain a high quality of life, the authors wrote.
More than 80 percent of study participants reported that supportive family and friends are important when it comes to following the gluten-free diet. Consequently, the impact of family-centered nutrition education needs to be explored as a way to increase adherence and quality of life.
“We also need to explore interventions that may help reduce some of the barriers described in our study that created the most anxiety and stress,” Wolf said. “We are currently pilot testing various interventions, such as gluten sensor devices, cooking-classes, and online discussion tools, to learn about their potential utility in promoting a strict gluten-free diet, but also whether or not such interventions could help improve quality of life.”
Kennedy said she would welcome real solutions, especially follow-up care from a dietitian with expertise in celiac disease. Like some study participants, she saw a dietitian once when diagnosed, but the dietitian knew less than she did about the gluten-free diet. Neither Kennedy or her daughter have had follow-up nutritional care. Regular visits with a knowledgeable dietitian are especially appealing to Kennedy because she thinks it would give her now pre-teen daughter someone she could trust to discuss the gluten-free diet challenges teenagers face, something she might not talk about with her mother.
“I’m glad researchers did this study,” Kennedy said, noting that at the very least it acknowledges the complexity of celiac disease and the gluten-free diet. “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.”