Ongoing care of children

After histological confirmation of a diagnosis of coeliac diseaseA condition where a person is unable to eat gluten as it makes their body attack itself. , regular lifelong follow-up is essential (1).

A gluten-freeWhen a food has less than 20 parts per million (ppm) of gluten so it is safe for people with coeliac disease to eat. diet requires the life long removal of glutenA protein that is found in the cereals wheat, barley and rye. , a protein found in wheat, rye, barley and oats, although the toxicity of oats remains debatable. 

Oats in the diet

Evidence looking at how oats affect people with coeliac disease shows that most adults (2,3,4) and children (5) can tolerate the gluten-like protein (avenin) found in oats. A randomised double blind study in children with coeliac disease found that the addition of moderate amounts of oats to a gluten-free diet does not prevent clinical or small bowel mucosal healing or humoral immunological down regulation (6).

The main problem with including oats and oat products in the gluten-free diet is that they are often contaminated with gluten during processing. There is also some evidence to suggest that some people with coeliac disease may even react to pure, uncontaminated oats (7,8).

Recommendations for follow up

Children with coeliac disease require regular follow up to assess:

• symptomatic improvement
• physical examination
• growth
• compliance with the gluten-free diet.

There is little evidence on the most effective timing and means of monitoring children with coeliac disease. However, they should be seen at least once per year (ideally 6 monthly) with an initial follow up within the first 3 months of diagnosis, by a paediatrician and paediatric dietitianAn expert in food and nutrition. . An annual assessment should also be offered. This should include a detailed dietary assessment which will allow the dietitian to look for possible nutrient deficiencies, compliance with the diet and the need for any nutritional supplementation. If symptoms re-occur, then urgent clinical review is required.

Adherence to the gluten-free diet

Measurement of tTGA after six months of treatment with a gluten-free diet is recommended as an indirect indicator of dietary compliance and recovery. This is also recommended in all children who have persistent symptoms as a rise in antibody levels suggests non-compliance with the gluten-free diet. In asymptomatic children the measurement of tTGA at yearly intervals or longer will help to monitor compliance with the gluten-free diet.

Transition to adult services is a critical period and should be addressed in a timely and sympathetic manner to meet the needs of the young person and according to the best practice guidance.

A gluten-free diet results in life long restrictions that can be difficult to accept and follow (9). Studies on dietary compliance show it to be poor in the long term. Follow up studies in teenagers with coeliac disease show that only about 50-65% follow a gluten-free diet (10,11,12,13). Regular follow up (1,14)  and a good knowledge of coeliac disease 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 M T, Molteni N, Prampolini L, Giunta A M, Baldassarri A R, Morganti D and Bianchi P A. (1994). Need for follow up in celiac disease. Archives of Disease in Childhood 70:211-213.

2. Janatuinen E K, Pikkarainen P H, Kemppainen T A, Kosma V M, Jarvinen R M K, Uusitupa M I J and Julkunen R J K. (1995). A comparison of diets with and without oats in adults with celiac disease. New England Journal of Medicine 333 : 1033-1037.

3. Srinivasan U, Leonard N, Jones E, Kasarda D D, Weir G, O’Farrelly C and Feighery. (1996). Absence of oats toxicity in adult celiac disease. British Medical Journal 313:1300-1301.

4. Storsrud S, Olsson M, Arridsson-Lenner R, Nilsson L A, Nilsson O and Kilander A. (2003). Adult coeliac patients do tolerate large amounts of oats.  European Journal of Clinical Nutrition 57:163-9.

5. Hoffenburg E J, Haas J, Drescher A, Barnhurst R, Osberg I, Bao F, Eisenbarth G. (2000). A trial of oats in children with newly diagnosed celiac disease. Journal of Pediatrics 137:361-366. 

6. Hogberg L, Laurin P, Falth-Magnusson K, Grant C, Grodzinsky E, Jansson G, Ascher H, Bowaldh L, Hammersjo J A, Myrdal U and Stenhammar L. (2004). Oats to children with newly diagnosed coeliac disease; a randomised double blind study. Gut 2004;53:649-654.

7. Lundin K et al (2003) Oats induced villous atrophy in coeliac disease. Gut 52: 1649-1652.

8. Haboubi NY et al (2006) Coeliac disease and oats: a systematic review. Postgraduate med J 82: 672-678

9. Maki M and Collin P. (1997). Coeliac Disease. Lancet 349:1755-1759.

10. Mayer M. Greco L, Troncone R, Auricchio S, Marsh M N. (1991). Compliance of adolescents with coeliac disease on a gluten free diet. Gut 32:881-885.

11. Kumar P J. (1985). The teenage celiac. Gut 26:A551.

12. Kumar P J, Walker-Smith J, Milla P, Harris G, Colyer J and Halliday R. (1988). The teenage celiac: follow up study of 102 patients. Archives of Diseases in Childhood 63:916-920.

13. Jackson P T, Glasgow J F and Thom R. (1985). Parents' understanding of celiac disease and diet. Archives of Diseases in Childhood 60:672-674.

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