Five-year follow-up of new cases after a coeliac disease mass screening

Abstract

ObjectiveWe previously performed a population-based mass screening of coeliac disease in children aged 12 years in two birth cohorts resulting in 296 seropositive children, of whom 242 were diagnosed with coeliac disease after duodenal biopsies. In this follow-up study, we wanted to identify new cases in the screening population that tested negative—either converting from potential coeliac disease (seropositive but normal duodenal mucosa) or converting from seronegative at screening to diagnosed coeliac disease.MethodsAll seropositive children were invited to a follow-up appointment 5 years after the screening with renewed serological testing and recommended endoscopic investigation if seropositive. Seronegative children in the screening study (n=12 353) were linked to the National Swedish Childhood Coeliac Disease Register to find cases diagnosed in healthcare during the same period.ResultsIn total, 230 (77%) came to the follow-up appointment, including 34 of 39 with potential coeliac disease. Of these, 11 (32%) had converted to coeliac disease. One new case was found in the National Swedish Childhood Coeliac Disease Register who received the diagnosis through routine screening in children with type 1 diabetes.ConclusionsThere is a high risk of conversion to coeliac disease among those with potential disease. However, a negative screening test was associated with a very low risk for a clinical diagnosis within a follow-up period of 5 years.

Population level screening for celiac disease: is now the time?

“…These studies must also address how mass screening compares to the expense and benefit derived from current targeted screening approaches. Second, more studies are needed on the natural history of potential celiac disease and transient celiac disease autoimmunity in order to determine the best practices in managing the clinical spectrum of patients who screen positive for celiac disease [47 ▪ ]. These additional studies will help round out a mass screening approach for policy stakeholders with respect to timing and frequency of screening and provide clinicians with evidence based recommendations on the management of the spectrum of individuals who screen positive.…”

Review article: Diagnosis of coeliac disease: a perspective on current and future approaches

“…In contrast, case‐finding in children is not effective, 215,216 and in the United Kingdom 83‐91% of children with CD aged 15 years or younger are thought to be undiagnosed specially in lower socioeconomic groups 177 . In future, mass screening in late childhood may gain support as the most efficient public health measure to address unrecognised CD 216,217 …”

“…177 In future, mass screening in late childhood may gain support as the most efficient public health measure to address unrecognised CD. 216,217 Table 5 summarises future directions for diagnostics in CD.…”

Evaluation of the Usefulness of an Automatable Immunoassay for Monitoring Celiac Disease by Quantification of Immunogenic Gluten Peptides in Urine

“…Although new approaches raise the hope for coeliacs, giving them a chance to return to gluten, for the time being, a cautionary appraisal of new therapies suggests that they may have a complementary role to gluten withdrawal, mainly to prevent inadvertent gluten contamination [ 5 , 6 ]. Consequently, several studies based on nutritional questionnaires, serological tests, and evaluating gluten immunogenic peptides (GIP) in stool and urine, have reported the non-adherence to a GFD in patients with CD to be between 10 and 88% in adults and between 2–77% in children [ 7 , 8 , 9 , 10 , 11 , 12 , 13 , 14 ]. Furthermore, recent studies have suggested that the persistence of atrophy is due to the recurrence of gluten exposure [ 15 ].…”