Coeliac disease screening in children and young people with Type 1 diabetes

Paediatric guidelines (in development)
NHS Lothian

Objectives

This guidance is intended for all clinicians in NHS Lothian who are involved with the care of children and young people (CYP) 18 years and under with Type 1 diabetes (T1DM) and to inform discussion regarding the need for screening / testing for Coeliac disease (CD) which is recognised as an ‘at-risk’ condition in T1DM and for pragmatic options for how and when to offer testing / screening for the condition after counselling of a patient and their family

Scope

This guidance is intended for children and young people with T1DM under age 18 in NHS Lothian.

Audience

All health care professionals dealing with Children and Young People under 18 with Type 1 diabetes

Roles and Responsibilities

All healthcare professionals dealing with patients with T1DM, primarily the paediatric diabetes team, should be aware of the association and discuss the condition with families to inform them of risk and potential for development of CD. All should be prepared for a discussion about CD, when appropriate and to seek further advice as required from the coeliac service. Opportunities to discuss screening for the condition should be taken at appointments as part of a healthcare assessment and clinical reviews.

Editorial Information

Last reviewed: 16/04/2025

Next review date: 14/04/2028

Author(s): Consultant Gastroenterologist NHS Lothian, RHCYP, Consultant in Paediatric Diabetes and Endocrinology NHS Lothian, RHCYP.

Approved By: Guidelines Group, Executive Lead: Associated Medical Director

Related resources

Type 1 diabetes (T1DM) – all individuals with T1DM.

Coeliac disease (CD) – an autoimmune enteropathy in a genetically susceptible individual, dependent on gluten (wheat, barley, rye) and which reverses on a Gluten Free Diet (GFD).

DQ typing – HLA testing via Blood Transfusion Service (BTS) tissue typing laboratory.

Screening – a process of actively checking for a condition in a group of patients seen as at increased of developing that condition.

References

1.Husby S, Koletzko S, Korponay-Szabo IR, et al. European Society for Pediatric Gastroenterology, Hepatology, and Nutrition guidelines for the diagnosis of coeliac disease. Journal of Pediatric Gastroenterology and Nutrition. 2012;54:136-60.

2.Husby S, Koletzko S, Korponay-Szabó I, et al. European society paediatric gastroenterology, hepatology and nutrition guidelines for diagnosing coeliac disease 2020. J Pediatr Gastroenterol Nutr 2020;70:141–56.

3. Murch S, Jenkins H, Auth M, et al. Joint BSPGHAN and Coeliac UK guidelines for the diagnosis and management of coeliac disease in children. Archives of Disease in Childhood. 2013;98:806-11.

4. NICE Coeliac disease: recognition, assessment and management (NG 20, 2015) https://www.nice.org.uk/guidance/ng20 (Accessed 23.1.25)

5. NICE Coeliac disease: Quality Standard (QS 134, 2016) https://www.nice.org.uk/guidance/qs134 (Accessed 23.1.25)

6. Tye-Din JA, Cameron DJ, Daveson AJ, et al. Appropriate clinical use of human leukocyte antigen typing for coeliac disease: an Australasian perspective. Intern Med J 2015;45:441-50

7. Mitchell RT, et al. Coeliac disease screening in a Scottish cohort of children with type I diabetes mellitus: is DQ typing the way forward? Arch Dis Child 2016; 101:230-3

8.Waisbourd-Zinman O, et al. Spontaneous Normalization of Anti-Tissue Transglutaminase Antibody Levels Is Common in Children with Type 1 Diabetes Mellitus. Dig Dis Sci (2012) 57:1314–1320

9.Castellaneta S, et al. Spontaneous normalization of celiac serology in a cohort of 446 children with Type 1 diabetes: a prospective study. Diabetes Care 38: 760-766 2015

10.Hatun S, et al. Recommendations for Clinical Decision-making in Children with Type 1 Diabetes and Celiac Disease: Type 1 Diabetes and Celiac Disease Joint Working Group Report. J Clin Res Pediatr Endocrinol 2022;14(1):1-9

11. Kamrath C, et al. Early vs late histological confirmation of coeliac disease in children with new-onset type 1 diabetes. Diabetologia (2022) 65:1108–1118