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Home , Type 1 diabetes

Coeliac and type 1 in a paediatric setting

Jonathan Mimnagh, Helen Thornton

Article points 1. The long-term health Since the publication of the National Institute for Health risks of untreated and Clinical Excellence guideline : diagnosis are well and management of type 1 diabetes in children and young documented. people (National Collaborating Centre for Women’s and 2. There is an increased Children’s Health, 2004), the need to screen for diabetes- risk of coeliac disease in people with type 1 associated conditions has been promoted as a requirement on diabetes. the diagnosis of type 1 diabetes, and, subsequently, at regular 3. While the impact of a points in the life of a child or young person. The authors dual diagnosis on a child present the experiences of a paediatric diabetes team based or young person should within a district general hospital setting in terms of the current not be underestimated, methods of screening and diagnosis of coeliac disease within the need for prompt and regular screening needs their area, the prevalence of coeliac disease and type 1 diabetes consideration by all in the population attending clinics within the authors’ area of paediatric diabetes teams. work, and the impact that this may have upon the day-to-day 4. The long-term health management of diabetes. Consideration is also given to the benefits of identifying ethical issues of screening on diagnosis. and managing coeliac disease are clear. Key words he National Institute for Health and disease. Some of the long-term complications Clinical Excellence (NICE; National of coeliac disease can be minimised by - Coeliac disease Collaborating Centre for Women’s concordance with a -free diet (Smith and - Gluten T - Screening and Children’s Health [NCCWCH], 2004) Watson, 2005). - Immunoglobulin A states that: Smith and Watson (2005) identify that endomysial antibody the clinical presentation of coeliac disease - Transglutamase antibody ‘Children and young people with is extremely variable. Classic symptoms - Jejunal biopsy type 1 diabetes have a higher prevalence may include recurrent attacks of diarrhoea, of autoimmune disorders such as coeliac steatorrhoea, abdominal distension, flatulence disease […] compared with children and and stomach cramps. It should be recognised young people without type 1 diabetes.’ that in children symptoms may be subtle, Jonathan Mimnagh and unidentified or misinterpreted, and that Helen Thornton are If unidentified or untreated, coeliac disease diagnosis of coeliac disease in the general Clinical Nurse Specialists in increases a person’s risk of lymphoma and paediatric population may occur following Paediatric and Adolescent Diabetes at St Helens and ulcerative jejunoileitis. Metabolic bone disease investigations for failure to thrive. There is also Knowsley Hospitals Trust, has also been identified as a a description of asymptomatic coeliac disease, Merseyside. of long-standing, poorly controlled coeliac and the diagnosis is made coincidentally.

222 Journal of Diabetes Nursing Vol 10 No 6 2006 Coeliac disease and type 1 diabetes in a paediatric setting

Prevalence been normal; these children and young people Page points With regard to the prevalence of coeliac continue with annual screening. 1. Between 1 % and 8 % of disease within the general population, figures This local prevalence rate of 5.3 % the paediatric diabetes quoted vary between one in 300 and one in corresponds with the rates contained within population are quoted as 100 (Coeliac UK, 2006d), making coeliac published articles (mentioned above; Cronin having coeliac disease. disease the leading cause of malabsorption and Shanahan, 1997; Barera et al, 2002), 2. Within the authors’ in the UK (Coeliac UK, 2006d). Within the and highlights the importance of screening paediatric clinic general paediatric population, the prevalence is promptly upon diagnosis and regularly population, 5.3 % of quoted as being between one in 3000 and one thereafter. those with type 1 diabetes also have coeliac disease. in 500 (Barera et al, 1991). Among people with diabetes, the prevalence Screening and diagnosis 3. The National Institute of coeliac disease is seen to rise significantly, NICE (NCCWCH, 2004) promotes the for Health and Clinical Excellence advises the use with between 1 % and 8 % of the paediatric screening for coeliac disease to be: of immunoglobulin A diabetes population being quoted as also endomysial antibody having coeliac disease (Cronin and Shanahan, ‘performed close to diagnosis and as screening as being the 1997; Barera et al, 2002). necessary thereafter.’ most accurate screening Within the authors’ clinic population of test for coeliac disease. children and young people with diabetes (up Within the authors’ area the decision has 4. A definitive diagnosis of to the age of 18), there are eight individuals been made that coeliac disease screening will coeliac disease is made via who have a dual diagnosis of type 1 diabetes take place on initial diagnosis of diabetes, and a jejunal biopsy. and coeliac disease, out of a total of 150. This then every 3 years subsequently, subject to any translates into a local prevalence of 5.3 % of strong family history or previous anomalous the current paediatric diabetes population. Of results, and in these cases screening may occur these, one child was diagnosed with coeliac annually. disease 2 years before her diagnosis of diabetes. There are several tests that are available Three others were diagnosed with coeliac to screen for coeliac disease. NICE disease a period of time after the diagnosis (NCCWCH, 2004) advises the use of of type 1 diabetes through routine screening immunoglobulin A (IgA) endomysial antibody at annual review; none of these individuals screening via as being experienced overt or classic symptoms of the most accurate screening test for coeliac coeliac disease prior to diagnosis of the disease, based upon a systematic review of test condition. characteristics. Other tests that are in common The remaining four children and young use for coeliac disease screening purposes people had a diagnosis made concurrent to that include the use of transglutamase antibody of diabetes; that is, the blood screening tests (often referred to as ‘tissue transglutamase for coeliac disease were positive at the time of antibody’) and antigliadin antibody. diagnosis of type 1 diabetes, and jejunal biopsy It is not within the scope of this article to confirmed the diagnosis of coeliac disease. discuss interpretation of the results of these Of these, only one young male was able to tests, but it should be noted that a definitive identify any gastrointestinal symptoms prior diagnosis of coeliac disease is made via a jejunal to the diagnosis of coeliac disease and diabetes biopsy. Accordingly, while families should be that would have potentially led to appropriate fully informed of the results of any screening investigations being completed if the diagnosis test, in the event that the tests are positive, they of diabetes had not intervened. (Table 1 should be advised to not make any changes to provides two case presentations.) diet prior to a jejunal biopsy occurring; removal It should also be noted that within the of gluten from the diet will restore the gut to authors’ caseload there are other children and normal function (Chudleigh and Hunter, 2005; young people who have experienced abnormal Smith and Watson, 2005), and thus result in a screening bloods, but whose jejunal biopsy has false-negative biopsy investigation.

Journal of Diabetes Nursing Vol 10 No 6 2006 223 Coeliac disease and type 1 diabetes in a paediatric setting

Table 1. Short case presentations.

Case study 1: ‘BG’ Case study 2: ‘SC’ l BG is an 8-year-old female who was l SC is a 14-year-old male who presented diagnosed with coeliac disease aged 3 years with severe diabetic in after investigations for failure to thrive. September 2005. l BG was diagnosed with type 1 diabetes l Immunoglobulin A endomysial aged 5 years. It was a classical presentation, antibody screening performed at not . diagnosis of diabetes was positive, as l BG’s diabetes was initially managed with was the repeat. twice-daily, free-mixed soluble l Jejunal biopsy confirmed coeliac (Human Actrapid; Novo Nordisk, disease. Crawley) and isophane insulin (Human l SC currently uses twice-daily Insulatard; Novo Nordisk). BG was biphasic (NovoMix 30; transferred to biphasic insulin aspart Novo Nordisk, Crawley). (NovoMix 30; Novo Nordisk) after l SC was apparently asymptomatic 3 months. for coeliac on diagnosis of diabetes; l BG was subsequently moved to a three- however, he feels that on reflection times-daily regimen of biphasic insulin several mild symptoms were present aspart with breakfast, a short-acting (bloating, flatulence and abdominal analogue (insulin aspart; NovoRapid; pain) that have resolved with the Novo Nordisk) with the evening meal, and commencement of a gluten-free diet. isophane insulin at night, in response to l SC is a rugby player; he feels that he is post-prandial hypoglycaemia in the evening playing at a better level following the and associated fasting hyperglycaemia. diagnosis of diabetes and coeliac disease l BG becomes symptomatic (nausea, than he has been for some time. vomiting, and loose stools) if gluten is accidentally ingested in her diet, even in very small amounts. Page points 1. Jejunal biopsy may be required in cases of What should be considered within the Clinical management immunoglobulin A paediatric diabetes population is that both The management of coeliac disease is achieved deficiency to confirm or IgA endomysial antibody screening and through the removal of all sources of gluten exclude a diagnosis of coeliac disease. transglutamase antibody screening rely upon within the diet. the presence of IgA. IgA deficiency increases a Prompt referral to a dietitian is required 2. The management of person’s risk of coeliac disease (Schwarzenberg once coeliac disease has been diagnosed, and coeliac disease is achieved through the removal of all and Brunzell, 2002; Lenhardt et al, 2004); subsequent education and dietary review often sources of gluten within therefore, negative results cannot be relied upon takes place alongside diabetes dietary review the diet. to exclude coeliac disease. Coeliac UK (2006b) within paediatric diabetes clinics. It should 3. Prompt referral to a advises that jejunal biopsy may be required in be recognised that gluten is often present as a dietitian is required cases of IgA deficiency to confirm or exclude thickening agent in some foods, and that gluten- once coeliac disease has a diagnosis of coeliac disease. This may need containing cereals may be used to add bulk to been diagnosed, and to be considered within the paediatric diabetes some food items such as sausages. Families need subsequent education and population if there are significant concerns to prevent gluten cross-contamination occurring, dietary review often takes place alongside diabetes about individuals’ risk of coeliac disease in cases and they will be instructed by dietetic staff to dietary review within where they have been diagnosed as being IgA prepare gluten-containing foods away from paediatric diabetes clinics. deficient. gluten-free foods and informed that strict hand

224 Journal of Diabetes Nursing Vol 10 No 6 2006 Coeliac disease and type 1 diabetes in a paediatric setting

washing needs to be maintained (Chudleigh and of drugs (being prescribed for use with specified Page points Hunter, 2005). conditions). Accordingly, the BNF for Children 1. With respect to diabetes states that doctors should satisfy themselves that: management and Glycaemic control glycaemic control, the With respect to and ‘patients are adequately monitored and effects of removing gluten glycaemic control, the effects of removing gluten […] hospital supervision is available.” from the diet will need observing closely. from the diet will need observing closely. Issues to consider are as follows. Dietary supplements 2. Coeliac UK is a source of l The malabsorption that has been occurring Anaemia can be a common complication of up-to-date information and guidance on gluten- because of villous atrophy will be corrected as coeliac disease and may need to be managed free foods. the mucosa recovers (Chudleigh and Hunter, with the use of iron supplements, vitamin B12 2005; Smith and Watson, 2005). This may and folic acid (Smith and Watson, 2005). 3. Dietitians will be able to prescribe suitable mean that blood levels alter once a Similarly there is a need to consider vitamin gluten-free products that gluten-free diet commences. and mineral supplements (including calcium) are considered essentials; l Gluten-free foods, especially biscuits, tend in some cases, especially those with severe these are classified as to contain higher levels of refined sugar than presentations (Schwarzenberg and Brunzell, ‘borderline substances’ by their gluten-containing alternatives (Coeliac 2002; Chudleigh and Hunter, 2005). the BNF for Children. Disease Resource Centre, 2004); this is to make the product more palatable in the Insulin absence of gluten. With regard to insulin, each child and young l Fibre content is generally lower in gluten-free person will need an individually tailored foods (Coeliac UK, 2006a), so there may need regimen to suit his or her own lifestyle, taking to be encouragement of alternative sources of into consideration the dietary issues discussed fibre in the diet, such as fruits and vegetables. previously. Schwarzenberg and Brunzell (2002) comment that people with type 1 diabetes and coeliac Ethical considerations disease may find maintenance of blood glucose At the time of diagnosis of type 1 diabetes, a control easier after diagnosis and treatment of child or young person and his or her family A selection of gluten-free coeliac disease. have the impact of the diagnosis of a chronic foods.

Gluten-free foods Coeliac UK Coeliac UK offers much the same support to people with coeliac disease as Diabetes UK offers to people with diabetes. It is a source of up-to-date information and guidance on gluten- free foods (Coeliac UK, 2006c).

Prescribing Dietitians will be able to prescribe suitable gluten-free products that are considered essentials, such as bread, pasta and biscuits. It should be noted that some gluten-free foods are not considered essential and therefore are not available on prescription. Those items that are available on prescription are classified as ‘borderline substances’ by the BNF for Children (British Medical Association et al, 2005); that is, they are a foodstuff with the characteristics

Journal of Diabetes Nursing Vol 10 No 6 2006 225 Coeliac disease and type 1 diabetes in a paediatric setting

Page points condition to cope with. Within the initial few Acknowledgements days they will receive a large amount of advice The authors would like to acknowledge the families who 1. At the time of diagnosis have given permission to be included in the two case of type 1 diabetes, a child and education. ‘Information overload’ can be presentations. or young person and his a problem for families at this time, and so it is or her family have the important to ensure that if blood screening tests Barera G, Bianchi C, Calisti L et al (1991) Screening of impact of the diagnosis are performed at diagnosis for autoimmune diabetic children for coeliac disease with antigliadin of a to antibodies and HLA typing. Archives of Disease in cope with. conditions associated with type 1 diabetes Childhood 66(4): 491–4 (such as coeliac disease and ), Barera G, Bonfanti R, Viscardi M et al (2002) 2. When any form of health then children, young people and their families Occurrence of celiac disease after onset of type 1 promotion takes place diabetes: a 6-year prospective longitudinal study. there is a need to ensure are fully informed as to the nature and reason Pediatrics 109(5): 833–8 that the decision for behind the investigations, the possible outcomes, British Medical Association (BMA), Royal screening is underpinned and any treatment that would be required in the Pharmaceutical Society of Great Britain (RPSGB), Royal College of Paediatrics and Child Health by some key ethical event of a further diagnosis being made. principles: respect for (RCPCH), Neonatal and Paediatric Pharmacists When any form of health promotion takes Group (NPPG; 2005) BNF for Children. BMA, autonomy, beneficence, RPSGB, RCPCH and NPPG, London non-malfeasance and place (including health screening) there is a need to ensure that the decision for screening Chudleigh VA, Hunter JO (2005) of the justice. gastrointestinal tract. In: Human Nutrition (11th is underpinned by some key ethical principles: Edition). Geissler C, Powers H (eds) Elsevier, 3. In the same way that London, 429–33 glycaemic control is respect for autonomy, beneficence (doing essential to prevent good), non-malfeasance (doing no harm) and Coeliac Disease Resource Centre (CDRC; 2004) Guide to Glutafin gluten-free foods. CDRC, Trowbridge, long-term microvascular justice (Katz et al, 2001). While the outcomes Wiltshire. Available at http://www.cdrc.org. and macrovascular of screening for coeliac disease within a child uk/common/cdrc/assets/pdf/Glutafin_HCP_ Factfile140904103044.pdf (accessed 28.06.2006) complications, suitable or young person newly diagnosed with type 1 screening for associated Coeliac UK (2006a) Diabetes and coeliac disease. Coeliac autoimmune conditions diabetes may appear to be doing good (the UK, High Wycombe. http://www.coeliac.co.uk/ has to be performed. identification of a potential second chronic healthcare_professionals/dietetic_information/182. condition allowing diagnosis and correct asp#8 (accessed 28.06.2006) Coeliac UK (2006b) Diagnosis. Coeliac UK, High management), if the screening is performed Wycombe. http://www.coeliac.co.uk/healthcare_ without an adequate level of information professionals/81.asp (accessed 28.06.2006) and support from the family in the form of Coeliac UK (2006c) Gluten-free living. Coeliac informed consent, then the need to be non- UK, High Wycombe. http://www.coeliac.co.uk/ glutenfree_living/default.asp (accessed 28.06.2006) malfeasant has been overlooked. The potential Coeliac UK (2006d) Prevalence and screening. Coeliac psychosocial impact of a dual diagnosis should UK, High Wycombe. http://www.coeliac.co.uk/ not be underestimated. healthcare_professionals/prevalence_and_screening/ default.asp (accessed 28.06.2006) Conclusion Cronin CC, Shanahan F (1997) Insulin-dependent diabetes mellitus and coeliac disease. Lancet The long-term health risks of untreated coeliac 349(9058): 1096–7 disease are well documented. As the published Katz J, Peberdy A, Douglas J (eds; 2001) Promoting Health: Knowledge and Practice. Palgrave Macmillan, figures show, the increased risk is significant London within people with type 1 diabetes. While the Lenhardt A, Plebani A, Marchetti F (2004) Role of impact of a dual diagnosis on a child or young human-tissue transglutaminase IgG and anti- person should not be underestimated, the need IgG antibodies in the diagnosis of coeliac disease in patients with selective immunoglobulin A deficiency. for prompt and regular screening as stated within Digestive and Liver Diseases 36(11): 730–4 NICE guidance (NCCWCH, 2004) needs National Collaborating Centre for Women’s and consideration by all paediatric diabetes teams. Children’s Health (2004) Type 1 diabetes: diagnosis and management of type 1 diabetes in children and The long-term health benefits of identifying and young people. Royal College of Obstetricians and managing coeliac disease are clear. In the same Gynaecologists, London way that glycaemic control is essential to prevent Schwarzenberg SJ, Brunzell C (2002) Type 1 diabetes and celiac disease: Overview and medical nutrition long-term microvascular and macrovascular therapy. Diabetes Spectrum 15(3): 197–201 complications, suitable screening for associated Smith G, Watson R (2005) Gastrointestinal Nursing. autoimmune conditions has to be performed. n Blackwell Science, Oxford

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