As new therapies for celiac disease move closer to clinical practice, gastroenterologists should look beyond symptoms and laboratory findings when determining which patients may benefit, according to Anne Lee, EdD, RD, LD.
Speaking at a virtual policy symposium hosted by the Society for the Study of Celiac Disease and the Celiac Disease Foundation, Dr. Lee argued that the nutritional, psychosocial, and economic burden of the gluten-free diet deserves greater consideration when assessing treatment eligibility.
“Practically speaking, we must consider the nutritional needs of our patients, the family dynamics, work, life, stressors, the food environment, and the cost,” said Dr. Lee, lead dietitian for the Celiac Disease Center at Columbia University and a nutrition education adviser for the Celiac Disease Foundation. “These are major concerns when we talk about our patients and talk about whether they would be eligible based on treatment burden alone and not maybe just symptoms.”
The gluten-free diet remains the foundation of celiac disease treatment, but Dr. Lee emphasized that following it successfully is more challenging than simply avoiding foods that contain wheat.
“I think this is something that is sometimes missed when we’re talking about eligibility for drugs,” she said. “The gluten-free diet, while it’s the only treatment for celiac disease, does pose some nutritional concerns and considerations we need to think about.”
Studies examining dietary patterns among patients with celiac disease have consistently found nutritional shortcomings. One review of 10 studies conducted between 2002 and 2021 found that adults on gluten-free diets often consume lower amounts of vitamins, minerals, fiber, and complex carbohydrates while consuming more fat, refined carbohydrates, sweeteners, and simple sugars than the general population.
Although gluten-free food manufacturers have improved nutritional content in recent years, Dr. Lee said clinicians that continue to see deficiencies in B vitamins, iron, calcium, and other nutrients. Patients may report that they feel well, yet present with evidence of poor nutritional status, unwanted weight gain, or other signs of dietary imbalance.
“We still find these concerns overriding,” she said. “We still see low B vitamin content in our patients. We still see low iron intake.”
The challenges extend well beyond nutrition.
“The treatment for celiac disease is the diet and diet alone, but that’s complex,” Dr. Lee said. Unlike many other diets, she noted, patients cannot take a break from treatment.
“You can maybe cheat. You can maybe take a day off. You can maybe be a little bit more relaxed,” she said of other dietary restrictions. “But for an individual with celiac disease, there’s no day off. It’s 24-7. It’s all the time.”
Because food plays such an important role in family life, social events, celebrations, dating, and work, the challenges of maintaining a strict gluten-free diet often affect many aspects of patients’ lives, not just their digestive health.
Studies of quality of life have repeatedly demonstrated significant psychosocial effects associated with celiac disease and its treatment. Research conducted at Columbia's Celiac Disease Center found increased social anxiety among patients who were reluctant to dine out, date, or participate in social activities. Other international studies have documented higher rates of depression and impaired emotional well-being.
“We saw an increased social anxiety,” Dr. Lee said. “People were afraid to go out, afraid to date. They didn’t want to go out to dinner.”
Two recurring themes have emerged from this work: restrictive eating patterns and hypervigilance. In one study, patients who avoided foods beyond gluten despite having no diagnosed intolerance or allergy exhibited higher levels of anxiety, greater body dissatisfaction, and more restrictive eating behaviors. Some participants met criteria for eating disorders.
“They started narrowing their intake more and more,” Dr. Lee said, often because they continued to experience symptoms and were unsure of the cause.
Hypervigilance can also take a heavy toll. In one study, patients who were most careful about reading food labels, questioning restaurant staff, and avoiding situations where they might be exposed to gluten reported significantly lower quality of life.
“We found that those individuals that were more adherent, more vigilant in checking labels, asking questions, not going out to eat because they were concerned, had a dramatic shift of 10 points in their overall quality-of-life score,” Dr. Lee said. “That’s not only statistically significant, but it shifts from a quality-of-life score that is moderate to one that is poor.”
The burden may be especially heavy for adolescents and young adults. Teens reported feeling isolated when eating out, frustrated by restaurant staff who did not take their concerns seriously, and unsure whether gluten-free labels were accurate. More than half of adults and nearly three-quarters of teens said the gluten-free diet had a major negative impact on their quality of life.
Cost remains another major obstacle. According to Dr. Lee, studies from multiple countries have shown that gluten-free products typically cost between 183% and more than 250% more than comparable wheat-based products. Even when mainstream manufacturers offer gluten-free versions, substantial price differences persist.
Food insecurity can magnify those challenges. Dr. Lee cited survey data showing limited availability of gluten-free foods in lower-income neighborhoods, heavy reliance on food assistance programs among affected households, and concerns about the safety of school meal programs for children with celiac disease.
Taken together, these findings suggest that treatment decisions should encompass much more than disease activity alone.
“Treatment eligibility should consider histology, serology, ongoing symptoms,” Dr. Lee said. “But also we should think about risk of complications. Let’s look at nutritional status. And we also need to consider social functioning, the mental health burden, the food-related anxiety and hypervigilance, the ongoing economic hardship, but also functional limitations.”
For clinicians, she concluded, understanding the lived experience of celiac disease will be critical as new therapies emerge.
“We must think of the framework,” Dr. Lee said. “The coverage frameworks really need to reflect both clinical and lived disease experiences.”
Dr. Lee disclosed that she has received research support from Takeda.