The burden of celiac disease includes ongoing symptoms, missed workdays and disordered eating

June 2, 2021

Studies on these topics and more covered at international meeting of gastroenterologists.

By Amy Ratner

Symptom relief, disordered eating and lost workdays were among a wide variety of celiac disease topics covered in posters presented recently at Digestive Disease Week (DDW). All illustrated the burden of disease faced by those who have celiac disease.

DDW is an annual conference for physicians, researchers and academics in the fields of gastroenterology, hepatology, endoscopy and gastrointestinal surgery. It was recently held virtually due to restrictions caused by COVID-19.

One group of researchers shared early details of investigations into the symptoms that would most motivate someone with celiac disease to take a drug for treatment. Others presented their findings on disordered eating in celiac disease, and a third group detailed the number of workdays missed due to celiac disease. Following are highlights from several poster presentations, which often give a glimpse into investigations underway.

Relief from symptoms versus drug side effects

More than half of those with celiac disease who participated in a study about risk taking, symptoms and willingness to take a drug for celiac disease said they are interested in new treatments. Another 40 percent said they might be interested or were not sure.

The study aimed to measure participants’ attitude towards new treatments and the health risks they are willing to take in order to get relief from symptoms or remission of celiac disease. Currently, there are no celiac disease drugs, and the only available treatment is strictly following the gluten-free diet. However, a number of drugs to treat celiac disease are currently being studied in clinical trials.

Study participants were most willing to face potential long-term health risks from a drug if it would mean relief from abdominal pain, researchers from Columbia University found. Overall, while symptomatic patients were more likely to take risks, interest in new treatments was similar regardless of how much tolerance of risk was reported.

Nearly 80 percent of study participants said they wanted to be able to “liberalize” their diet, while 70 percent said they wanted to decrease their chance of getting cancer.

The study was based on an online questionnaire that measured general risk-taking attitudes and symptom severity. Nearly 20 percent of participants identified themselves as risk-takers. Most risk-takers were young males who reported more severity of symptoms, predominantly bloating.

Patients with celiac disease will need to make decisions about the risks and benefits of new treatments that may become available, the study authors wrote, noting that patients can be monitored with blood tests, biopsies and symptom assessment.

“We now better understand which symptoms drive patients to seek non-dietary therapies, and what they are willing to risk for symptomatic improvement,” study authors wrote.

Disordered eating in young adults

Young adults with celiac disease may have more anxiety, disordered eating attitudes and beliefs, and a lower quality of life, a new study suggests.

The study was based on survey responses from about 500 people with celiac disease recruited by the Celiac Disease Center at Columbia University. They represented a cross section of ages, marital status and length of time on the gluten-free diet. Study participants answered questions about quality of life, social anxiety and maladaptive eating. Researchers designed the study to better understand the association among demographics and anxiety, maladaptive eating, and quality of life. They noted that the gluten-free diet has been associated with disordered eating and lower quality of life.

Click to enlarge

Overall, study participants reported quality of life in the moderate range. But a lower quality of life was indicated by those who were 23 to 35 years old compared to those who were older than 65; engaged compared to all other marital status; and on the gluten-free diet for less than one year compared to 10 years.

Compared to older adults, young adults had more social anxiety. Study participants who were single also reported being socially anxious. Young adults also had more prominent maladaptive eating attitudes, which suggested more disordered eating behaviors, though the difference between them and those older than 65 was not statistically significant.

Trends that emerged from the study help identify the extent of the impact of the gluten-free diet on multiple aspects of daily life, researchers concluded. They noted that the study identified gaps in management of celiac disease in clinical practice that need to be addressed.

Celiac disease causes missed workdays

Those with celiac disease on average miss about 50 percent more workdays than the general population, according to early results of a new study based on Swedish sick leave and disability compensation data from a national social insurance register.

Additionally, researchers found that those with celiac disease have about a 40 percent increase in risk of having work lost compared to the general public.

The study was done by researchers the Karolinska Institute and Orebro University in Sweden and Columbia University.

In 2015, people with celiac disease in Sweden missed about 42 workdays compared to about 27 days for people without celiac disease, the study found. Researchers looked at data from about 16,000 people of working age, from 25 to 59 years old, who had been diagnosed as of January 1. Study author Soran Bozorg, MD, a researcher affiliated with both Swedish institutions, said this analysis was designed to capture the total burden of work loss in those with celiac disease, including those in all stages of the disease. Bozorg noted that the number of workdays lost is high compared to what would likely be found the United States because of differences in social security systems, with Sweden having more generous sick leave policies.

The work loss was concentrated in a minority of celiac disease patients, about 25 percent, while about 75 percent had no lost workdays. Not a lot is known about the group of workers who miss the most work, but more analysis is planned, Bozorg said.

Researchers also looked at data from a group of about 5,000 working-age people with celiac disease diagnosed from 2008 to 2015.

On average, this group missed eight more workdays than the general population five years before diagnosis. The difference in the number of lost workdays then grew each year, reaching 14 days five years after diagnosis. Loss of work increased additionally in the year of diagnosis, but this added increase was temporary. About 1,300 in the group had a follow-up biopsy from six months to five years after diagnosis. About 75 percent had intestinal healing, while about 25 percent had persistent intestinal damage.

The study included enabled researchers to “learn more about how the extent of work loss developed over time, and specifically how the extent of work loss was affected by events such as receiving diagnosis and achieving mucosal healing,” Bozorg explained.

“Patients with celiac disease miss more workdays than comparators before their diagnosis, and this loss increases and persists after the diagnosis,” study authors noted. “Neither being diagnosed with celiac disease, nor achieving mucosal healing, restored work loss to general-population levels.”

Effect of a mother’s undiagnosed celiac disease on her baby

Boys born to mothers with undiagnosed celiac disease are smaller than expected at birth, but appear to catch up in their first year, according to a study from the Mayo Clinic.

Male children whose undiagnosed mothers had positive blood tests for celiac disease and were not following the gluten-free diet weighed less at birth and at six months lagged in length compared to children whose mothers who did not have celiac disease. Female children born to mothers with undiagnosed celiac disease did not differ in weight and height when compared to daughters of women who did not have celiac disease.

The study by researchers from the Mayo Clinic and colleagues included 126 children born to undiagnosed mothers and 252 whose mothers did not have celiac disease. The children of mothers with undiagnosed celiac disease were followed over time, and ten of the children were ultimately diagnosed with celiac disease.

No difference in weight and height was found in 26 children also included in the study whose mothers had diagnosed celiac disease. They were compared to 51 children whose mothers did not have celiac disease.

“Further large studies are warranted to study adverse outcomes in offspring of undiagnosed celiac mothers,” the study concluded.

Ethnicity and celiac disease screening in children with type 1 diabetes

Ethnicity did not influence whether or how often a child with type 1 diabetes was screened for celiac disease, according to a study by researchers from the University of Chicago.

Children with type 1 diabetes are at greater risk for celiac disease than the general public and routine screening is recommended. In adults in the United States, celiac disease is thought to be particularly underdiagnosed in Black and Hispanic populations. Overall, the diagnosis rate of celiac disease is thought to be between 17 and 50 percent.

A review of randomly selected charts of 55 children with type 1 diabetes treated at the university from 2000 to 2020 found that all but one had been screened for celiac disease. The sample included 53 percent who were white non-Hispanic and 47 percent who were non-white. Both white patients and non-white patients were first screened for celiac disease within the first year after a type 1 diabetes diagnosis, though screening occurred slightly later in white patients. The average number of years between screening was about one year in both groups.

Nine children had elevated celiac disease screening results, six of whom were white and three of whom were non-white. Four children were diagnosed with celiac disease, all of whom were white.

Celiac disease and learning, memory, attention and more

Celiac disease patients 60 years and older had cognitive test scores similar to their peers in the general population, according to results from a study by Columbia University researchers. The scores of people 60 and older who don’t have celiac disease but follow the gluten-free diet were also similar.

Researchers looked at 3,181 cognitive tests scores from the National Health and Nutrition Examination Survey (NHANES), a nationally representative survey program. Included were 20 people with celiac disease and 38 following the gluten-free diet for reasons other than celiac disease. NHANES participants older than 60 years underwent cognitive assessment between 2011 and 2014. Tests included learning and memory function, verbal fluency, processing speed, attention and working memory.

The study noted that brain fog has been described in patients with celiac disease and non-celiac gluten sensitivity, but the nature and strength of the association between cognitive impairment and gluten-related disorders is poorly understood. Limited data is one reason.

“Further research is needed to better characterize, quantify and explore the mechanisms underlying the cognitive symptoms reported by patients with celiac disease and non-celiac gluten sensitivity,” the study concludes.

OUR PARTNERS

Think you may have celiac disease?

Symptoms Checklist