Kids who had no symptoms when diagnosed with celiac disease through screening often don't stick with the gluten-free diet as young adults

20-year follow-up finds children diagnosed because of symptoms fare better with diet and disease management

By Amy Ratner, director of scientific affairs

When someone has symptoms before being diagnosed with celiac disease, the relief they get by going on the gluten-free diet can be a strong motivator to stick with it. Someone who had no symptoms before diagnosis can find it harder to be strictly gluten-free.

That is the case with young adults diagnosed as children 20 years ago who were followed up in a new study by researchers in Italy.

Most of the asymptomatic children diagnosed randomly through a large celiac disease testing program have either abandoned the gluten-free diet or follow it poorly. They also never or rarely have blood tests for celiac disease, the study says.

“Our data suggest that asymptomatic children diagnosed through screening need closer monitoring, better education after diagnosis and during transition into adult care and a better follow-up strategy in adulthood,” the authors wrote.

Diet and disease management

The study followed-up people who were both asymptomatic and symptomatic at diagnosis as children and found that less than half of the asymptomatic study participants said they were following the gluten-free optimally. One in five had abandoned the gluten-free diet.

The young adult celiac disease patients diagnosed in childhood through screening have worse compliance to the gluten-free diet when compared to those diagnosed because of symptoms, the study says.

Forty percent of the asymptomatic patients had never had the follow-up celiac disease blood tests that measure the level of anti-tissue transglutaminase (TTG) antibodies. Twenty four percent said they got regular testing compared to 80 percent of patients who had been symptomatic.

In the group that had been diagnosed two decades ago because they had symptoms, 81 percent said they were following the gluten-free diet optimally, while nine percent reported their adherence to the diet was inadequate.

Meanwhile, the two groups have a similar risk of developing another autoimmune condition in adulthood, according to the study.

The follow-up

Both groups of participants had been diagnosed at about 7 or 8 years old and were contacted by researchers at the Institute for Maternal and Child Health in Trieste, Italy, to participate in the follow-up study, which was published in the Journal of Pediatric Gastroenterology and Nutrition.

Twenty-five study participants were among more than 3000 school children screened in 1999 to 2000, and 34 were diagnosed after developing symptoms including failure to thrive, abdominal pain, anemia, diarrhea, loss of appetite. All study participants were interviewed by phone to determine whether their compliance with the gluten-free diet was optimal, improvable or inadequate.

Study participants were asked to rate their compliance through a short questionnaire developed in 2009 as a reliable way to evaluate how well someone was following the gluten-free diet. Based on answers, they were divided into three levels of adherence. Questions included how often they voluntarily ate gluten and whether they told someone else preparing their food about their celiac disease, checked labels and relied on the Italian celiac association’s information about safe gluten-free products.

Results from a 2022 Beyond Celiac survey of about 1700 people with celiac disease showed that about 8 percent intentionally eat gluten at least once a month, which lines up with the Italian study’s finding that nine percent reported eating either a normal portion of gluten-containing food or just a taste often or rarely.

Other autoimmune diseases

The Italian follow-up study also found that 16 percent of patients diagnosed through screening and 18 percent diagnosed with symptoms had developed other autoimmune diseases. These included Hashimoto thyroiditis, type 1 diabetes, psoriasis, Graves’ disease and vitiligo. Compliance with the gluten-free diet did not correlate with development of other autoimmune conditions, the study says.

The similar risk of developing other autoimmune conditions suggests the two groups have a comparable need to be monitored for these conditions, the study says.

Study limitations include the small sample size and the fact that how well study participants were following the gluten-free diet was measured through a questionnaire only and not with a celiac disease antibody blood test. Additionally, the medical care of the two groups in the first years after diagnosis might have been different, with potential influence on how well the diet was followed over the long run.

You can read more about the study here.