Children whose celiac disease is detected early do better over time

Studies and guidelines increasingly suggest that targeted screening programs and early diagnosis benefit patients.

By Victoria Stagg Elliott — Posted April 13, 2009

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Identifying celiac disease through populationwide screening leads to improved health for those who are diagnosed, and as a result, establishing these types of programs on a limited scale should be considered, according to a study in the April Pediatrics.

"The earlier the better, I truly believe," said Rima Kittley, MD, a family physician in Lufkin, Texas. "There's a whole lot of damage that happens over years, and if you get it diagnosed early, you prevent a lot of the chronic misery." She herself has celiac disease but was not affiliated with the study.

Whether to screen for the condition and who should be tested have been a matter of debate. Many experts do not believe populationwide efforts would be realistic, although more targeted efforts are viewed as relevant. A small but growing number of institutions are periodically providing screening opportunities, and a handful of guidelines recommend it for specific populations.

"The most cost-effective way is case-finding," said Alessio Fasano, MD, medical director of the University of Maryland Center for Celiac Research in Baltimore. "We need to test people who have symptoms and conditions related to celiac disease rather than screen everybody."

For example, the American College of Gastroenterology's guidelines on managing irritable bowel syndrome direct that people with this condition, should routinely be tested for celiac. These principles were published in the January American Journal of Gastroenterology. Additionally, practice guidelines from the World Gastroenterology Organization issued in February 2005 suggest advising first- and second-degree relatives of those with celiac disease that serological testing may be appropriate.

For the recent paper, researchers at Leiden University Medical Center in the Netherlands followed for 10 years 32 children diagnosed with celiac disease. Their diagnoses occurred between the ages of 2 and 4 in the course of a screening program for everyone in that age range.

After a decade, 26 had adhered to a gluten-free diet, and 17 of them had improved their health status. All 26 bettered their health-related quality of life after one year. After a decade, their quality of life was similar to those without the disease.

"A lot of people think that, if they go on a gluten-free diet, their quality of life worsens. It really does not worsen. It actually makes it better for them," said Dr. Ritu Verma, section chief of clinical gastroenterology at Children's Hospital of Philadelphia, who was not connected to the paper. "These children are more used to just eating gluten-free foods, and they don't have to see another doctor for bellyaches."

Experts praised the study for documenting the experiences of children with screen-detected celiac disease. But they also said the small numbers limited the conclusions that could be made.

"Interpreting the study should be done with caution," said Edward Hoffenberg, MD, director of the Program for Pediatric Inflammatory Bowel Diseases at the Children's Hospital in Aurora, Colo. "This study only includes a minority of the eligible children and likely has a bias towards those with some symptoms to begin with."

The question also remains about the future health of those who are antibody positive for celiac disease but do not have symptoms and do not eliminate gluten from their diet. In this study, six remained symptom-free for a decade without changing what they ate.

"Whether those who do not have symptoms should keep a gluten-free diet or not is not yet settled," said Yoram Elitsur, MD, director of gastroenterology at Marshall University in Huntington, W.Va. "And it's difficult to know from their study. If you don't have any symptoms, it is very difficult to improve on that." He helps organize annual screenings for the disease for children and adults at high risk.

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Study at a glance

When celiac is detected through mass screening, how do children fare?

Objective: Assess the impact on long-term health and quality of life when detecting celiac disease through mass screening of toddlers.

Methods: Researchers followed 32 children ages 2-4 whose disorder was detected through screening of the general population in 1998. Their health was assessed in 1999, 2000, 2001, 2002, 2003 and 2007.

Results: After a decade, 26 children adhered to a gluten-free diet. Of this group, 17 experienced improvement of health status. All 26 experienced an improvement in health-related quality of life after one year. After 10 years, their quality of life was similar to those without the disease. For six participants, treatment after screening would not have improved their health because they had no symptoms when the disorder was detected. They stayed symptom-free without changing their diets for the duration of the study.

Conclusions: Mass screening and treating those with the symptoms of celiac disease improves health status and health-related quality of life. Limited screening programs should be considered. Delaying treatment for children who test positive but have no symptoms is an option, but longer-term studies are needed to determine the effects of decades of untreated asymptomatic celiac disease.

Source: Pediatrics April

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External links

"Long-term Health and Quality-of-Life Consequences of Mass Screening for Childhood Celiac Disease: A 10-Year Follow-up Study," abstract, Pediatrics, April (link)

National Institutes of Health Consensus Development Conference on Celiac Disease, June 28-30, 2004 (link)

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