Diagnosing coeliac disease

NICE Pathways bring together everything NICE says on a topic in an interactive

flowchart. NICE Pathways are interactive and designed to be used online.

They are updated regularly as new NICE guidance is published. To view the latest
version of this NICE Pathway see:

http://pathways.nice.org.uk/pathways/coeliac-disease
NICE Pathway last updated: 30 October 2020

This document contains a single flowchart and uses numbering to link the boxes to the
associated recommendations.

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1 Person with possible coeliac disease

No additional information

2 When to offer serological testing

Offer serological testing for coeliac disease to:

people with any of the following:

persistent unexplained abdominal or gastrointestinal symptoms
faltering growth
prolonged fatigue
unexpected weight loss
severe or persistent mouth ulcers
unexplained iron, vitamin B12 or folate deficiency
type 1 diabetes, at diagnosis
autoimmune thyroid disease, at diagnosis
irritable bowel syndrome (in adults)

first-degree relatives of people with coeliac disease.

For information on when to offer referral or investigations for suspected cancer to people with
abdominal or gastrointestinal symptoms, fatigue, unexplained weight loss, iron-deficiency
anaemia or new-onset type 1 diabetes, see the NICE Pathway on suspected cancer recognition
and referral: symptoms and findings.

For further information, see the NICE Pathways on diabetes, faltering growth and irritable bowel
syndrome in adults.

Consider serological testing for coeliac disease in people with any of the following:

metabolic bone disorder (reduced bone mineral density or osteomalacia)

unexplained neurological symptoms (particularly peripheral neuropathy or ataxia)
unexplained subfertility or recurrent miscarriage
persistently raised liver enzymes with unknown cause
dental enamel defects
Down's syndrome

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 Diagnosing coeliac disease NICE Pathways

Turner syndrome.

Do not offer serological testing for coeliac disease in infants before gluten has been introduced
into the diet.

Healthcare professionals should have a low threshold for re-testing people identified in the
recommendations above if they develop any symptoms consistent with coeliac disease.

Quality standards

The following quality statement is relevant to this part of the interactive flowchart.

1. Serological testing for coeliac disease

3 Information and advice about testing

Dietary advice

For people undergoing investigations for coeliac disease:

explain that any test is accurate only if a gluten-containing diet is eaten during the
diagnostic process and
advise the person not to start a gluten-free diet until diagnosis is confirmed by a specialist,
even if the results of a serological test are positive.

Advise people who are following a normal diet (containing gluten) to eat some gluten in more
than 1 meal every day for at least 6 weeks before testing.

If people who have restricted their gluten intake or excluded gluten from their diet are reluctant
or unable to re-introduce gluten into their diet before testing:

refer the person to a gastrointestinal specialist and

explain that it may be difficult to confirm their diagnosis by intestinal biopsy.

New or persistent symptoms and delayed diagnosis

Advise people who have tested negative for coeliac disease, particularly first-degree relatives
and people with type 1 diabetes, that:

coeliac disease may present with a wide range of symptoms and

they should consult their healthcare professional if any of the symptoms listed in when to

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 Diagnosing coeliac disease NICE Pathways

offer serological testing [See page 3] arise or persist.

Explain to people who are thought to be at risk of coeliac disease that a delayed diagnosis, or
undiagnosed coeliac disease, can result in continuing ill health and serious long-term
complications.

Quality standards

The following quality statements are relevant to this part of the interactive flowchart.

1. Serological testing for coeliac disease

2. Referral to a specialist

4 Serological testing

All serological tests should be undertaken in laboratories with clinical pathology accreditation or
ISO15189 accreditation.

When healthcare professionals request serological tests to investigate suspected coeliac

disease in young people and adults, laboratories should:

test for total IgA and IgA tTG as the first choice

use IgA EMA if IgA tTG is weakly positive

consider using IgG EMA, IgG DGP or IgG tTG if IgA is deficient (IgA deficiency is defined
as total IgA less than 0.07 g per litre).

When healthcare professionals request serological tests to investigate suspected coeliac

disease in children, laboratories should:

test for total IgA and IgA tTG as the first choice
consider using IgG EMA, IgG DGP or IgG tTG if IgA is deficient.

When laboratories test for total IgA, a specific assay designed to measure total IgA levels
should be used.

Do not use human leukocyte antigen DQ2 (DQ2.2 and DQ2.5)/DQ8 testing in the initial
diagnosis of coeliac disease in non-specialist settings.

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 Diagnosing coeliac disease NICE Pathways

Only consider using human leukocyte antigen DQ2 (DQ2.2 and DQ2.5)/DQ8 testing in the
diagnosis of coeliac disease in specialist settings (for example, in children who are not having a
biopsy, or in people who already have limited gluten ingestion and choose not to have a gluten
challenge).

Laboratories should clearly communicate the interpretation of serological test results and
recommended action to healthcare professionals.

5 When to refer

Positive serological test results

Refer young people and adults with positive serological test results to a gastrointestinal
specialist for endoscopic intestinal biopsy to confirm or exclude coeliac disease. In young
people and adults, a positive serological test result is defined as unambiguously positive IgA
tTG alone, or weakly positive IgA tTG and a positive IgA EMA test result. Note: In people who
have IgA deficiency, a serologically positive result can be derived from any one of the IgG
antibodies.

Refer children with positive serological test results to a paediatric gastroenterologist or

paediatrician with a specialist interest in gastroenterology for further investigation for coeliac
disease. Further investigation may include, but is not limited to, one or more of the following: an
IgA EMA test to confirm serological positivity, human leukocyte antigen genetic testing, an
endoscopic biopsy.

Negative serological test results

Refer people with negative serological test results to a gastrointestinal specialist for further
assessment if coeliac disease is still clinically suspected.

See the NICE Pathway on transition from children's to adults' services.

Quality standards

The following quality statements are relevant to this part of the interactive flowchart.

2. Referral to a specialist

3. Endoscopic intestinal biopsy

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6 Managing coeliac disease

See Coeliac disease / Managing coeliac disease

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Glossary

DGP

deamidated gliadin peptide

EMA

endomysial antibodies

IgA

immunoglobulin A

tTG

tissue transglutaminase

Sources

Coeliac disease: recognition, assessment and management (2015) NICE guideline NG20

Your responsibility

Guidelines

The recommendations in this guideline represent the view of NICE, arrived at after careful
consideration of the evidence available. When exercising their judgement, professionals and
practitioners are expected to take this guideline fully into account, alongside the individual
needs, preferences and values of their patients or the people using their service. It is not
mandatory to apply the recommendations, and the guideline does not override the responsibility
to make decisions appropriate to the circumstances of the individual, in consultation with them
and their families and carers or guardian.

Local commissioners and providers of healthcare have a responsibility to enable the guideline
to be applied when individual professionals and people using services wish to use it. They
should do so in the context of local and national priorities for funding and developing services,

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Diagnosing coeliac disease NICE Pathways

and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to
advance equality of opportunity and to reduce health inequalities. Nothing in this guideline
should be interpreted in a way that would be inconsistent with complying with those duties.

Commissioners and providers have a responsibility to promote an environmentally sustainable

health and care system and should assess and reduce the environmental impact of
implementing NICE recommendations wherever possible.

Technology appraisals

The recommendations in this interactive flowchart represent the view of NICE, arrived at after
careful consideration of the evidence available. When exercising their judgement, health
professionals are expected to take these recommendations fully into account, alongside the
individual needs, preferences and values of their patients. The application of the
recommendations in this interactive flowchart is at the discretion of health professionals and
their individual patients and do not override the responsibility of healthcare professionals to
make decisions appropriate to the circumstances of the individual patient, in consultation with
the patient and/or their carer or guardian.

Commissioners and/or providers have a responsibility to provide the funding required to enable
the recommendations to be applied when individual health professionals and their patients wish
to use it, in accordance with the NHS Constitution. They should do so in light of their duties to
have due regard to the need to eliminate unlawful discrimination, to advance equality of
opportunity and to reduce health inequalities.

Commissioners and providers have a responsibility to promote an environmentally sustainable

health and care system and should assess and reduce the environmental impact of
implementing NICE recommendations wherever possible.

Medical technologies guidance, diagnostics guidance and interventional procedures

guidance

The recommendations in this interactive flowchart represent the view of NICE, arrived at after
careful consideration of the evidence available. When exercising their judgement, healthcare
professionals are expected to take these recommendations fully into account. However, the
interactive flowchart does not override the individual responsibility of healthcare professionals to

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Diagnosing coeliac disease NICE Pathways

make decisions appropriate to the circumstances of the individual patient, in consultation with
the patient and/or guardian or carer.

Commissioners and/or providers have a responsibility to implement the recommendations, in

their local context, in light of their duties to have due regard to the need to eliminate unlawful
discrimination, advance equality of opportunity, and foster good relations. Nothing in this
interactive flowchart should be interpreted in a way that would be inconsistent with compliance
with those duties.

Commissioners and providers have a responsibility to promote an environmentally sustainable

health and care system and should assess and reduce the environmental impact of
implementing NICE recommendations wherever possible.

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