In a five-year follow-up study in Sweden looking at new celiac disease cases following a mass screening in children aged 12, researchers found that children initially diagnosed with potential celiac disease had a high risk of developing celiac disease. Patients diagnosed with potential celiac disease have a positive tTg blood test but a normal small intestinal biopsy and are generally not treated with a gluten-free diet if asymptomatic. A negative tTg blood test was associated with a very low risk of developing celiac disease within five years.
The study researchers followed two groups of children: 1) those with positive serology (tTg blood test) at the screening were invited to a follow-up appointment five years later, and 2) those with negative (normal) serology were added to the National Swedish Childhood Celiac Disease Register to identify any new celiac disease diagnoses. Of the patients with potential celiac disease at the screening who came to the follow-up appointment, 32% had converted to celiac disease based on a small intestinal biopsy. This is important because it emphasizes the necessity for continued monitoring of children. The presence of symptoms alone may not be a reliable indication of which children will develop celiac disease because symptoms can be ambiguous and challenging to identify. The authors suggest that population-based screening for celiac disease is the only way to find most celiac disease cases.
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