Patients With Celiac Disease Are Not Followed Up Adequately

ArticleinClinical gastroenterology and hepatology: the official clinical practice journal of the American Gastroenterological Association 10(8):893-899.e1 · May 2012with13 Reads
Impact Factor: 7.90 · DOI: 10.1016/j.cgh.2012.05.007 · Source: PubMed

Adherence to a gluten-free diet is the only effective treatment for celiac disease. It has been recommended that patients be followed up, make regular visits to the clinic, and undergo serologic analysis for markers of celiac disease, although a follow-up procedure has not been standardized. We determined how many patients with celiac disease are actually followed up. We collected data on 122 patients with biopsy-proven celiac disease, diagnosed between 1996 and 2006 in Olmsted County, Minnesota (70% women; median age, 42 y), for whom complete medical records and verification of residency were available. We determined the frequency at which patients received follow-up examinations, from 6 months to 5 years after diagnosis. The Kaplan-Meier method was used to estimate event rates at 1 and 5 years. Patients were classified according to categories of follow-up procedures recommended by the American Gastroenterological Association (AGA). We estimated that by 1 and 5 years after diagnosis with celiac disease, 41.0% and 88.7% of the patients had follow-up visits, 33.6% and 79.8% were assessed for compliance with a gluten-free diet, 3.3% and 15.8% met with a registered dietitian, 2.5% and 18.1% had an additional intestinal biopsy, and 22.1% and 65.6% received serologic testing for markers of celiac disease, respectively. Among 113 patients (93%) who were followed up for more than 4 years, only 35% received follow-up analyses that were consistent with AGA recommendations. Patients with celiac disease are not followed up consistently. Follow-up examinations often are inadequate and do not follow AGA recommendations. Improving follow-up strategies for patients with celiac disease could improve management of this disease.

    • "We concluded that in our local community either physicians, patients, or both do not always want a biopsy to confirm CD. These children do not receive appropriate diagnostic confirmation and are also missing out on the support and education our clinic provides [4, 23, 24]. Hence, we undertook to pilot a SD approach in our clinic. "
    [Show abstract] [Hide abstract] ABSTRACT: . The European Society for Pediatric Gastroenterology, Hepatology and Nutrition endorses serological diagnosis (SD) for pediatric celiac disease (CD). The objective of this study was to pilot SD and to prospectively evaluate gastrointestinal permeability and mucosal inflammation at diagnosis and after one year on the gluten-free diet (GFD). We hypothesized that SD would be associated with similar short term outcomes as ED. Method . Children, 3–17 years of age, referred for possible CD were eligible for SD given aTTG level ≥200 U/mL, confirmed by repeat aTTG and HLA haplotypes. Gastrointestinal permeability, assessed using sugar probes, and inflammation, assessed using fecal calprotectin (FC), at baseline and after one year on a GFD were compared to patients who had ED. Results . Enrolled SD ( n = 40 ) and ED ( n = 48 ) patients had similar demographics. ED and SD groups were not different in baseline lactulose: mannitol ratio (L : M) (0.049 versus 0.034; p = 0.07 ), fractional excretion of sucrose (%FES; 0.086 versus 0.092; p = 0.44 ), or fecal calprotectin (FC; 89.6 versus 51.4; p = 0.05 ). At follow-up, urine permeability improved and was similar between groups, L : M (0.022 versus 0.025; p = 0.55 ) and %FES (0.040 versus 0.047; p = 0.87 ) ( p > 0.05 ). FC improved but remained higher in the SD group (37.1 versus 15.9; p = 0.04 ). Conclusion . Patients on the GFD showed improved intestinal permeability and mucosal inflammation regardless of diagnostic strategy. This prospective study supports that children diagnosed by SD have resolving mucosal disease early after commencing a GFD.
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