Ongoing care of children

After histological confirmation of the diagnosis of coeliac disease (CD) regular life long follow-up is essential in the management plan (1), with life long adherence to a gluten-free diet (GFD) being recommended to avoid the long term risks.

A GFD is defined as one that excludes wheat, rye, barley and possibly oats, as the toxicity of oats is still debatable. There is evidence to suggest that oats are not harmful in adults with CD (2,3,4), and children (5), with a recent randomised double blind study in children with CD showing that the addition of moderate amounts of oats to a GFD does not prevent clinical or SB mucosal healing or humoral immunological down regulation (6). However, long term studies are required to determine the safety of including oat cereal in the GFD as none of these studies lasted for more that 12 months. Also, the practicality of including oats in a GFD is limited by the potential contamination with gluten during processing. For example, the majority of commercially available oat flour is contaminated with 10-15% wheat.

Children with CD require regular follow up for assessment of symptomatic improvement, physical examination, growth and concordance with the GFD. There is little evidence on the most effective timing and means of monitoring children with CD. However, they should be seen at least once per year (ideally 6 monthly) with an initial follow up after diagnosis within the first 3 months, by a paediatrician and paediatric dietitian. An Annual Assessment should also be offered. This should include a detailed dietary assessment which will allow the dietitian to look for possible macro/micro nutrient deficiencies, concordance with the diet and the need for any nutritional supplementation. Measurement of tTG after 6 months of treatment with a GFD is recommended as an indirect indicator of dietary concordance and recovery. This is also recommended in all children who have persistent symptoms as a rise in antibody levels suggest non concordance with the GFD. In asymptomatic children, measurement of tTg at intervals of a year or longer help to monitor concordance with the diet.

Transition to adult services is a critical period and requires to be addressed in a timely and sympathetic manner to meet the adolescents needs.

A GFD results in life long restrictions that can be difficult to accept and follow (7). Studies on dietary concordance show it to be poor in the long term. Follow up studies in teenagers with CD show only about 50-65% follow a GFD (8,9,10,11).  Regular follow up (1,12)  and a good knowledge of CD both positively correlate with dietary compliance. Therefore, any strategy that can aid dietary adherence should be encouraged.

Thank you to Jacqui Lowdon, Dietitian and one of Coeliac UK's Medical Advisory Council Associates, for providing this information. 

References

1 Bardella MT et al. Need for follow up in celiac disease. Arch Dis Child 1994; 70:211-213.

2 Janatuinen EK et al. A comparison of diets with and without oats in adults with celiac disease. New England Journal of Medicine 1995 ;333 : 1033-1037.

3 Srinivasan U et al. Absence of oats toxicity in adult celiac disease. BMJ 1996;313:1300-1301.

4 Storsrud S et al. Adult coeliac patients do tolerate large amounts of oats.  European Journal of Clinical Nutrition 2003;57:163-9.

5 Hoffenburg EJ et al. A trial of oats in children with newly diagnosed celiac disease. Journal of Pediatrics 2000;137:361-6. 

6 Hogberg L et al. Oats to children with newly diagnosed coeliac disease; a randomised double blind study. Gut 2004;53:649-654.

7 Maki M and Collin P. Coeliac Disease. Lancet 1997;349:1755-1759.

8 Mayer M et al. Compliance of adolescents with coeliac disease on a gluten free diet. Gut 1991;32:881-885.

9 Kumar PJ et al. The teenage celiac. Gut 1985;26:A551

10 Kumar PJ et al. The teenage celiac: follow up study of 102 pts. Archives of Diseases in Childhood 1988;63:916-920.

11 Jackson PT et al. Parents' understanding of celiac disease and diet. Archives of Diseases in Childhood 1985;60:672-674.

12 Ljungman G and Myrdal U. Compliance in teenagers with coeliac disease - a Swedish follow up study. Acta Paediatrica 1993;82:235-238.