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Coeliac disease

Short Text

Recognition and assessment of coeliac disease.

Introduction

This pathway covers the recognition and assessment of coeliac disease in adults and children.
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 the person is under 16, their family or carers should also be given information and support to help the child or young person to make decisions about their treatment. Healthcare professionals should follow the Department of Health's advice on consent. If someone does not have capacity to make decisions, healthcare professionals should follow the code of practice that accompanies the Mental Capacity Act and the supplementary code of practice on deprivation of liberty safeguards.
For young people moving between paediatric and adult services, 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.
Adult and paediatric healthcare teams should work jointly to provide assessment and services to young people. Diagnosis and management should be reviewed throughout the transition process, and there should be clarity about who is the lead clinician to ensure continuity of care.

Updates to this pathway

20 March 2014 Minor maintenance update
2 January 2014 Minor maintenance update
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

Serological testing for coeliac disease

View the 'Serological testing for coeliac disease' path

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 a pathway on chronic fatigue syndrome / myalgic encephalomyelitis)
  • 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
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

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Source guidance

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Dietary 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

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Information 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

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Patient experience in adult NHS services pathway

View the 'Patient experience in adult NHS services overview' path

Paths in this pathway

Pathway created: October 2012 Last updated: March 2014

Copyright © 2014 National Institute for Health and Care Excellence. All Rights Reserved.

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