NHD PAEDIATRIC HUB FACT FILE
Coeliac Disease
Overview
Coeliac Disease is a systemic, auto-immune gastrointestinal disorder whereby the ingestion of gluten - a storage protein found in wheat, barley and rye - causes damage to intestinal mucosa with resultant malabsorption, increased risk of anaemia and osteoporosis. It is a lifelong autoimmune disease, and the only treatment is a strict gluten-free diet. A gluten-free diet allows the gut to heal and reduces the risk of serious long term complications.
Important note
When doing your assessment for coeliac patients, it’s important to still follow the dietetic care pathway. Therefore, under each of these headings, we have provided some suggestions for you to look at. These are not all conclusive but can provide you with a good starting point.
Anthropometrics
What is their current weight and height? Have these been plotted on a growth chart?
What is their BMI if age is appropriate?
What was their growth history? Have they recently lost weight prior to their diagnosis or has their weight been static?
Have they dropped centiles?
Biochemistry
Main bloods to measure | Their importance |
|---|---|
TTG | * |
Red Blood Cells, Haemoglobin and Ferritin | Screen for iron deficiency anaemia |
Vitamin D | Screen for Vitamin D deficiency which can affect bone health |
Folate | Screen for Folate Deficiency |
B12 | Screen for B12 Deficiency |
Thyroid and Liver Function Tests | This screens for associated autoimmune conditions |
*TTG alone is not a good marker to evaluate adherence or ongoing villous atrophy in patients on a gluten-free diet so therefore make sure to check all the aspects of dietary assessment as well.
Clinical
Have they been diagnosed by biopsy or non-biopsy pathway?
Was sufficient gluten consumed during the time of testing?
Symptoms associated with coeliac disease:
➔ Persistent non-specific GI symptoms
➔ Chronic diarrhoea
➔ Constipation
➔ Iron Deficiency Anaemia
➔ Other micronutrient deficiencies like B12 or Folate
➔ Weight loss
➔ Skin Rashes
➔ Prolonged fatigue
Are these symptoms resolved or ongoing? How long have they been going on for? Or are these symptoms new?
Does the child even have symptoms as some children can be asymptomatic?
Has the child got any other medical conditions?
Has any of the family got coeliac disease or another autoimmune condition?
Are they up to date with their vaccinations? Vaccinations are recommended due to the increased prevalence of hyposplenism in people with coeliac disease so pneumococcal vaccine and booster is recommended every 5 years.
Dietary
Is a gluten-free diet being followed?
Oats are often allowed from diagnosis as long as these are gluten free but check your local policy for further information
Does the family and child have a good awareness of what food items contain gluten? Are they managing to read labels correctly?
How are they managing cross contamination? Think about wiping down surfaces, dishwasher or washing up liquid being used to remove gluten and clean dishes, use a separate toaster or toaster bags. Use clean oil or separate fryer for gluten-free foods and use different spreads like butter or jam.
How are they managing eating out or even holidays away?
Does their diet contain sufficient calcium/iron containing foods?
Is there sufficient fibre in the diet? This is often lacking due to the removal of a lot of high fibre foods containing gluten.
Are they on a multiple vitamin?
Due to gluten-induced enteropathy, a secondary disaccharidase deficiency may occur at the time of diagnosis. Therefore, lactose exclusion may be required.
Environmental
Does the child area allow for the prescription of gluten-free products? Are families able to access this? Review their prescription if needed,
Has family testing been carried out?
Are the school or nursey and other family members aware and able to support?
Is the child about to transition school or go to university? This affects their coherence or makes things more difficult to be gluten free and avoid cross contamination.
Check in with the child’s mental health too. People with coeliac disease are more prone to depression, anxiety and eating disorders.
Based on these suggestions and more, you would then come up with your own PASS statement and work with the family to come up with some realistic goals which are SMART focused.
Suggestions and useful tips
Fortification in foods:
Ensure parents check for gluten-free products to see if they are fortified in iron and calcium. Our fortified and gluten-free foods database table has a list of these with their nutritional information, which were correct at the time of writing. This could be an easy way to meet iron and calcium if the child is struggling to get this in their diet through foods which are naturally high in these sources.
Preparing schools / nursey / child minders
It’s important to try to encourage parents to arrange a meeting with their new school/current school/nursey or childminder and provide them with as much information as possible. A common misconception is that being gluten free is just a diet trend rather than needed for a clinical condition so therefore having a dietitian letter can provide support in some cases.
As a dietitian, you could print off some useful resources from Coeliac UK as well as speaking to schools directly if needed and providing them with the Coeliac UK School pack
Struggling with change in the diet
Often changing to a gluten-free diet can be difficult for children to accept. Therefore, to help, ensure that you:
➔ Involve the child: Make them part of the decision-making process to promote understanding and compliance with the gluten-free diet
➔ Fun Food Substitutions: Explore lots of different brands and food types of gluten-free options with them especially for some of their regular foods in their diet or foods they enjoyed like cookies, pizza crusts for example
➔ Cooking: Involve the child in trying to experiment in the kitchen with gluten-free products to help compliance and also teach them in the process about cross contamination
➔ Snacks: Ensure they always have gluten-free snacks for school or outings to ensure that safe options are always within reach which may help provide them with some reassurance
Poor adherence/ dislike to gluten-free breads or products
Try encouraging parents to use more foods which are naturally gluten free in replacement such as:
➔ Potatoes
➔ Sweet potatoes
➔ Quinoa
➔ Rice noodles
➔ Rice
Adherence can also be promoted by having regular nutritional education and follow up with a dietitian to help improve their knowledge and motivation to change. Therefore try ensure you have appropriate follow up as required for each paediatric patient.
Compiled exclusively for NHD by...
Fact file references
Coeliac disease: recognition, assessment and management NICE guideline (NG20) Published date: 02 September 2015 https://www.nice.org.uk/guidance/ng20
European Society Paediatric Gastroenterology, Hepatology and Nutrition Guidelines for Diagnosing Coeliac Disease 2020J Pediatr Gastroenterol Nutr . 2020 Jan;70(1):141-156. http://www.espghan.org/guidelines/gastroenterology/
Joint BSPGHAN and Coeliac UK guidelines for the diagnosis and management of coeliac disease in children : Murch S, Jenkins H, Auth M, et al. Arch Dis Child 2013;98:806–811.
Guideline for the diagnosis and treatment of celiac disease in children: Recommendations of the North American society for Pediatric Gastroenterology, Hepatology and Nutrition. Journal of pediatric Gastroenterology and Nutrition. $0:1-19. January 2005
Diagnosis and management of adult coeliac disease: guidelines from the British Society of Gastroenterology ‘Ludvigsson JF, Bai JC, Biagi F, et al Gut 2014;63:1210-1228.
https://www.nhs.uk/conditions/vaccinations/pneumococcal-vaccination/
‘The management of adults with coeliac disease in primary care’, Primary Care Society for Gastroenterology https://www.guidelines.co.uk/gastrointestinal/pcsg-coeliac-disease-guideline/453339.article
Coeliac UK https://www.coeliac.org.uk/healthcare-professionals/
Lee, A.R. et al. (2024) ‘Dietary assessments in individuals living with coeliac disease: Key considerations’, Journal of Human Nutrition and Dietetics, 38(1). doi:10.1111/jhn.13380.