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Coeliac disease
Short Text
Introduction
This pathway covers the recognition and assessment of coeliac disease.
Coeliac disease is an autoimmune disorder that involves a heightened immunological response to ingested gluten in genetically susceptible people. It was believed to be uncommon but population-based studies show that it is much more prevalent than previously thought.
Although people with coeliac disease often have gastrointestinal symptoms, other symptoms are increasingly being recognised and some people have no symptoms at all.
Coeliac disease often coexists with other conditions.
Source guidance
The NICE guidance that was used to create the pathway.
Coeliac disease. NICE clinical guideline 86 (2009)
Quality standards
Quality statements
Effective interventions library
Successful effective interventions library details
Implementation
Commissioning
These resources include support for commissioners to plan for costs and savings of guidance implementation and meeting quality standards where they apply.
These resources will help to inform discussions with providers about the development of services and may include measurement and action planning tools.
Education and learning
NICE produces resources for individual practitioners, teams and those with a role in education to help improve and assess users' knowledge of relevant NICE guidance and its application in practice.
Service improvement and audit
These resources provide help with planning ahead for NICE guidance, understanding where you are now, and conducting improvement initiatives.
Pathway information
Information for the public
NICE produces information for the public that summarises, in plain English, the recommendations that NICE makes to healthcare and other professionals.
NICE has written information for the public explaining its guidance on coeliac disease.
Patient-centred care
Patients and healthcare professionals have rights and responsibilities as set out in the NHS Constitution for England – all NICE guidance is written to reflect these. Treatment and care should take into account individual needs and preferences. People should have the opportunity to make informed decisions about their care and treatment, in partnership with their healthcare professionals. If someone does not have the capacity to make decisions, healthcare professionals should follow the Department of Health's advice on consent, the code of practice that accompanies the Mental Capacity Act and the supplementary code of practice on deprivation of liberty safeguards. In Wales, healthcare professionals should follow advice on consent from the Welsh Government.
If the person is under 16, healthcare professionals should follow the guidelines in Seeking consent: working with children. If a young person is moving between paediatric and adult services their care should be planned and managed according to the best practice guidance described in the Department of Health's Transition: getting it right for young people.
Updates to this pathway
31 May 2013 Minor maintenance update
23 October 2012 Minor maintenance update
Supporting information
Glossary
Anti-gliadin antibodies
Anti-endomysial antibodies
Human leukocyte antigen DQ2/DQ8
Immunoglobulin A
Immunoglobulin G
Anti-tissue transglutaminase antibodies
Child or adult presents to primary or secondary care
Child or adult presents to primary or secondary care
When to offer serological testing for coeliac disease
When to offer serological testing for coeliac disease
When to offer serological testing for coeliac disease
Offer serological testing to children and adults with any of the following signs and symptoms:
- chronic or intermittent diarrhoea
- failure to thrive or faltering growth (in children)
- persistent or unexplained gastrointestinal symptoms including nausea and vomiting
- prolonged fatigue ('tired all the time') (NICE has produced guidance on chronic fatigue syndrome)
- recurrent abdominal pain, cramping or distension
- sudden or unexpected weight loss
- unexplained iron-deficiency anaemia, or other unspecified anaemia.
Offer serological testing to children and adults with:
- any of the following conditions
- autoimmune thyroid disease
- dermatitis herpetiformis
- irritable bowel syndrome (NICE has produced a pathway on irritable bowel syndrome in adults)
- type 1 diabetes (NICE has produced a pathway on diabetes)
or
- first-degree relatives (parents, siblings or children) with coeliac disease.
Consider offering serological testing to children and adults with any of the following:
- Addison's disease
- amenorrhoea
- aphthous stomatitis (mouth ulcers)
- autoimmune liver conditions
- autoimmune myocarditis
- chronic thrombocytopenia purpura
- dental enamel defects
- depression or bipolar disorder (NICE has produced a pathway on depression and guidance on bipolar disorder)
- Down's syndrome
- epilepsy (NICE has produced a pathway on epilepsy)
- low-trauma fracture
- lymphoma
- metabolic bone disease (such as rickets or osteomalacia)
- microscopic colitis
- persistent or unexplained constipation (NICE has produced a pathway on constipation in children and young people)
- persistently raised liver enzymes with unknown cause
- polyneuropathy
- recurrent miscarriage
- reduced bone mineral density
- sarcoidosis
- Sjögren's syndrome
- Turner syndrome
- unexplained alopecia
- unexplained subfertility (NICE has produced a pathway on fertility).
Implementation tools
Failed to load fragment (default behaviour with no loader supplied): staticcontentfragments/implementation-node-multipleSource guidance
Failed to load fragment (default behaviour with no loader supplied): staticcontentfragments/source-guidance-nodeDietary considerations before serological testing
Dietary considerations before serological testing
Dietary considerations before serological testing
Do not use serological testing for coeliac disease in infants before gluten has been introduced to the diet.
Inform people (and their parents or carers as appropriate) that:
- testing (serology and biopsy if required) is accurate only if they follow a gluten-containing diet
- when following a gluten-containing diet they should eat some gluten (for example, bread, chapattis, pasta, biscuits or cakes) in more than one meal every day for at least 6 weeks before testing; however, it is not possible to say exactly how much gluten should be eaten
- they should not start a gluten-free diet until diagnosis is confirmed by intestinal biopsy (even if a self-test or other serological test is positive).
If a person is reluctant or unable to reintroduce gluten into their diet before testing:
- refer them to a gastrointestinal specialist and
- inform them that it may be difficult to confirm a diagnosis of coeliac disease on intestinal biopsy, and that this may have implications for the prescribing of gluten-free foods.
Source guidance
Failed to load fragment (default behaviour with no loader supplied): staticcontentfragments/source-guidance-nodeInformation to provide before serological testing
Information to provide before serological testing
Information to provide before serological testing
Inform people who are considering, or who have undertaken, self-testing for coeliac disease (and their parents or carers) that any result from self-testing needs to be discussed with a healthcare professional and confirmed by laboratory-based tests.
Before seeking consent to take blood for serological tests, explain:
- what coeliac disease is
- that serological tests do not diagnose coeliac disease, but indicate whether further testing is needed
- the implications of a positive test (including referral for intestinal biopsy and implications for other family members)
- the implications of a negative test (that coeliac disease is unlikely but it could be present or arise in the future).
Inform people (and their parents or carers as appropriate) that a delayed diagnosis of coeliac disease, or undiagnosed coeliac disease, can result in:
- continuing ill health
- long-term complications, including osteoporosis and increased fracture risk, unfavourable pregnancy outcomes and a modest increased risk of intestinal malignancy
- growth failure, delayed puberty and dental problems (in children).
Source guidance
Failed to load fragment (default behaviour with no loader supplied): staticcontentfragments/source-guidance-nodeSerological testing for coeliac disease
View the 'Serological testing for coeliac disease' pathPaths in this pathway
Pathway created: October 2012 Last updated: May 2013
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