Healthcare Professionals FAQs
We hope that the following will answer your questions. If you have any other queries please contact us or call the Helpline to speak to one of our dietitians on 0333 332 2033.
Frequently Asked Questions
How do I diagnose coeliac disease?
There is a National Institute of Health and Clinical Excellence (NICE) guideline on recognition, assessment and management of coeliac disease for healthcare professionals in Primary and Secondary care. The guideline outlines the symptoms and patients at risk of coeliac disease and also the appropriate blood tests and the exact process to be completed in order to identify patients with coeliac disease.
The British Society of Paediatric Gastroenterology, Hepatology and Nutrition (BSPGHAN) in collaboration with Coeliac UK published guidelines on the diagnosis of coeliac disease in children in 2013. These guidelines suggest that in some cases in children with symptoms and whose blood tests show a high level of antibodies and who have the genes present for coeliac disease, a biopsy may not be needed to confirm diagnosis. We have further information on the diagnosis of coeliac disease on our website.
What happens if someone with coeliac disease eats gluten by mistake?
The reaction to eating gluten varies from person to person. In some people, it may trigger symptoms that last several days, while others might not experience any symptoms at all. The amount of gluten someone eats affects the degree of gut damage and your individual sensitivity to gluten affects the symptoms you may or may not experience. You may also find that your symptoms differ in type and/or severity compared to before you were diagnosed.
If a mistake is made and you have gluten by accident, it is unlikely to cause any long term gut damage, although you may suffer from diarrhoea, abdominal pain or vomiting so it is important to stay hydrated by drinking lots of water. You may find taking medication to treat constipation, diarrhoea or headaches can ease your symptoms. Speak to your GP or pharmacist for further advice.
What advice should be given about including oats in the diet?
Gluten-free oats may be introduced to the diet at any stage following diagnosis. However, a small percentage of people with coeliac disease are sensitive to gluten-free oats and if a patient has ongoing symptoms whilst including gluten-free oats in the diet, their use should be reviewed by a health professional. Read more about oats.
What does 'gluten-free' really mean?
The term 'gluten-free' implies no gluten, but in practice it is not possible to test for a zero level of gluten. Research has shown that people with coeliac disease are able to safely tolerate a very small amount of gluten. As a result low levels of gluten are allowed in products that are labelled gluten-free. When you see the term gluten-free this means that the food contains no more than 20 parts per million (ppm) gluten.
What are the recommended levels of gluten in gluten-free or very low gluten foods?
The law on gluten-free has two categories:
- Foods containing 20 parts per million (ppm) gluten or less - Only foods that contain 20 ppm or less can be labelled as 'gluten-free'. This includes specialist, substitute foods on prescription and in the Free From section of the supermarket. Also, some mainstream foods that are labelled gluten-free.
- Foods containing above 20 and no more than 100 ppm gluten - Specialist substitute products (such as breads and flour mixes) that contain Codex wheat starch with a gluten level between 21 and up to 100 ppm may be labelled as ‘very low gluten’.
Is there a guideline on coeliac disease for Scotland?
The National Institute for Health and Care Excellence (NICE) published a guideline on the recognition, assessment and management of coeliac disease in children and adults in England and Wales in September 2015. The British Society of Paediatric Gastroenterology, Hepatology and Nutrition (BSPGHAN) in collaboration with Coeliac UK published guidelines on the diagnosis and management of coeliac disease in children in 2013. These guidelines may be applied in Scotland, as the Scottish Intercollegiate Guidelines Network (SIGN) who develop guidelines for the National Health Service (NHS) in Scotland, have not yet produced guidelines on coeliac disease.
We have further information on diagnosis on our website.
What information is available to increase my knowledge and skills on supporting people with coeliac disease?
Information on training opportunities and resources is available on our website. You can also join Coeliac UK as a healthcare professional member to keep up to date on the latest developments on coeliac disease.
Where can I find information to support hospital caterers on providing gluten-free food?
Coeliac UK has produced an online training course for caterers. Further information on the course can be found on the Coeliac UK website.
Where can I get information on gluten-free prescribing?
National prescribing guidelines written by Coeliac UK, the Primary Care Society of Gastroenterology and the British Dietetic Association provide recommendations on the quantities of gluten-free foods for prescribing purposes. Further information on gluten-free prescribing and a copy of these guidelines can be found on our website.
Why is access to gluten free staple food on prescription important?
Wheat is the basis of the staples in the diet and is therefore the most widely consumed grain in the UK. Removing gluten from the diet can therefore have significant impact on the diet.
Rates for adherence to the gluten-free diet can vary between 42-91% [1] and gluten free staples on prescription have been related to inadvertent adherence [2]. Non-adherence to the gluten free diet, the medical treatment for coeliac disease is associated with increased risk of complications including osteoporosis, infertility problems and in rare cases intestinal malignancy.
Research has shown that gluten free staple foods are 3-4 times more expensive than equivalents containing gluten [3,4]. Availability of gluten free food, particularly in budget supermarkets and corner shops is also limited or non-existent. These access problems underpin the need for provision of gluten-free staple food on prescription, particularly for those on a limited income or with limited mobility.
[1] Hall, N.J. Rubin, G. & Charnock, A. (2009). Systematic review: adherence to a gluten-free diet in adult patients with coeliac disease. Alimentary Pharmacology & Therapeutics, 30, 315-330.
[2] Hall, N. et al. (2013). Intentional and inadvertent non-adherence in adult coeliac disease. A cross-sectional survey. Appetite 68 56-62
[3] Singh, J. & Whelan, K. (2011). Limited availability and higher cost of gluten-free foods. Journal of Human Nutrition and Dietetics, 24, 479-486.
[4] Burden, M., et al., Cost and availability of gluten-free food in the UK: in store and online. Postgraduate Medical Journal, 2015: p. postgradmedj-2015-133395
What should I cover when seeing a patient with coeliac disease?
Information on the management of coeliac disease, including new patient appointment and follow up appointment checklists can be found on the Coeliac UK website. You can also refer patients to Coeliac UK for further information and support on the gluten free diet and access to resources. Find out more about the benefits for your patients of joining Coeliac UK.
Is there any guidance to assist healthcare professionals on the amounts of gluten-free foods that should be prescribed to people with coeliac disease?
You can access ‘Gluten-free foods: a revised prescribing guideline’ on the Coeliac UK website. This guideline provides recommendations on prescribing reasonable quantities of gluten-free staple foods for people diagnosed with coeliac disease.
How do I join?
Joining is easy. Simply go to www.coeliac.org.uk/HCPMembership and complete the join form. You will be asked for your professional registration number and other details regarding your profession. Once you’ve completed and submitted the join form you’ll receive an email to activate your online account. You’ll have access to our exclusive HCP web pages and be able to update your personal online scrapbook with all the pages and documents that you find the most useful.
What is the Healthcare Professional (HCP) Membership?
The HCP Membership is an exclusive professional membership giving you more targeted and tailored information and support to support you in your profession.
Do you have to be a Healthcare Professional join as an HCP Member?
Yes you do need to be a Healthcare Professional to join as an HCP Member. You must register with a valid email address, your professional registration number and a work address for validation purposes.