Lost Boys (& Girls) of Celiac

The blog post alludes to the ‘lost boys of Sudan.’ Between 1987-2005, there were more than 20,000 Sudanese boys displaced by the civil wars in Sudan.

With regard to Celiac disease (CD), the problem is no where near as dire.  However, the authors of a recent abstract note poor follow-up for pediatric celiac disease and speculate that this could lead to worsened outcomes (NAPSGHAN Annual Meeting 2018; abstract 105 cited in gastroendonews.com: Clinicians Fumbling Follow-up For Celiac Kids).  Those without followup may have suboptimally-treated CD which could lead to vitamin deficiencies, and autoimmune diseases.

Key finding:

  • “We lost 25% in the first year and half within three years.”  Patients were considered lost to follow-up if they did not attend a visit with a celiac specialist for 18 months.

There has been data documenting even higher rates of poor follow-up among adults with celiac disease: Closer followup for Celiac disease & pediatric guidelines (2012)

My take: Celiac disease may have higher rates of poor follow-up than other GI conditions since symptoms may be minimal in many; however, poor followup is commonplace throughout medicine and contributes to worsened outcomes

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