Coeliac Disease - Leeds

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1.  Background Information / Scope of Pathway

Quick info:
This pathway has been developed by LTHT gastroenterologist Jason Jennings using BSG and NICE Guidelines correct as of 2014.
This pathway has been further updated February 2021. Reviewed and amended by Leeds Nutrition and Dietetics working group with representation from LTHT, LCH, LYPFT. Also discussed and agreed with LTHT Gastroenterologist, Jason Jennings.

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2.  Information Resources for Patients and Carers

Quick info:
Gluten Free Diet First Steps Advice - Patient Information Leaflet
Coeliac UK - Web link

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3.  Development and Updates to this Pathway

Quick info:
Pathway developed in February 2014
Reviewed February 2015. Reviewed and amended by Leeds Nutrition and Dietetics working group with representation from LTHT, LCH, LYPFT. Also discussed and agreed with LTHT Gastroenterologist, Jason Jennings.

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4.  Referral Forms, Training and Further Resources

Quick info:
Referral Forms:
Coeliac Disease Referral Form
Training and Further Resources:
Gluten-Free Foods – Prescribing Guidelines

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5.  Suspected Coeliac Disease

Quick info:
Coeliac disease:

  • is often undiagnosed or misdiagnosed in general practice unless the condition is actively considered
  • should also be considered before a diagnosis of irritable bowel syndrome (IBS) is made

Clinical presentation:

  • many patients have minimal symptoms or present atypically
  • occurs frequently without gastrointestinal (GI) symptoms
    • in adults, coeliac disease may be diagnosed on average over 10 years after first symptoms

Adult disease may present with chronic or unexplained gastrointestinal symptoms, or various associated complications, including:

  • anaemia:
    • at least 50% of patients have anaemia at presentation
    • iron deficiency the commonest picture followed by low folate, which may result in a mixed population
    • B12 deficiency is rare as absorption is co-factor dependent and occurs in the often unaffected terminal ileum
    • haemoglobin levels return to normal with a gluten free diet
  • "IBS type symptoms"
  • isolated nutritional deficiency, eg:
    • hypocalcaemia
    • folic acid deficiency
    • vitamin D deficiency
  • dermatitis herpetiformis:
    • itchy, blistering rash on trunk and extensor surfaces
    • cutaneous manifestation
  • autoimmune diseases, eg type 1 diabetes mellitus, thyroid disease
  • unexplained osteoporosis and fragility fractures
  • lactose intolerance, pancreatic insufficiency, microscopic colitis
  • reduced fertility, adverse pregnancy outcomes, recurrent abortion, or amenorrhoea
  • unexplained elevated transaminases, indicating either a non-specific hepatitis or associated unrecognised autoimmune hepatitis
  • unexplained neurological or psychiatric symptoms
  • sexual and reproductive dysfunction

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6.  When to Offer Serological Testing

Quick info:
Population screening for coeliac disease is not currently recommended.
Suspect coeliac disease, and offer serologic testing, if the person has any of the characteristic symptoms and signs:

  • sudden or unexpected weight loss -  being overweight does not rule out the possibility of coeliac disease
  • failure to thrive or faltering growth (in children)
  • chronic or intermittent diarrhoea
  • recurrent abdominal pain, cramping, or distension
  • gastrointestinal symptoms, including nausea and vomiting, that are persistent or unexplained
  • prolonged fatigue (tired all the time)
  • unexplained anaemia (iron, vitamin B12, or folate deficiency)

Coeliac disease presents more often with atypical symptoms; therefore, test people who are known to be at increased risk because they have:

  • dermatitis herpetiformis
  • autoimmune thyroid disease
  • symptoms of irritable bowel syndrome
  • type 1 diabetes
  • a first-degree relative (parent, sibling, or child) with coeliac disease

Consider testing for coeliac disease if the person has any of the following conditions which are known to be associated with coeliac disease:

  • autoimmune conditions:
    • Addison's disease
    • autoimmune liver conditions
    • autoimmune myocarditis
    • chronic thrombocytopenia purpura
    • Sjögren's syndrome
  • problems that could be due to an underlying autoimmune condition:
    • persistently elevated liver enzymes with unknown cause.
    • polyneuropathy
    • unexplained alopecia
    • unexplained subfertility
  • gynaecological conditions:
    • amenorrhoea
    • recurrent miscarriage
  • bone conditions:
    • low-trauma fracture
    • reduced bone mineral density (especially in men and premenopausal women)
    • metabolic bone disease (such as rickets or osteomalacia)
  • gastrointestinal conditions:
    • aphthous stomatitis (mouth ulcers)
    • dental enamel defects
    • microscopic colitis
    • persistent or unexplained constipation
  • genetic conditions:
    • Down's syndrome
    • Turner syndrome
  • miscellaneous conditions:
    • depression or bipolar disorder
    • epilepsy
    • lymphoma
    • sarcoidosis

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7.  History and examination

Quick info:
Assessment of adults with suspected coeliac disease:

  • ask patient about:
    • frequency and duration of symptoms, including:
      • chronic or intermittent diarrhoea
      • recurrent abdominal pain, cramping or distension
      • weight loss
      • chronic GI symptoms including nausea and vomiting
      • chronic fatigue, low mood, poor appetite
      • steatorrhoea
    • whether they have noted any dietary precipitants for symptoms
    • associated features, including:
      • iron or folate deficiency anaemia
      • family history of coeliac disease
      • aphthous ulcers
      • abnormal levels of dental decay
      • type 1 diabetes
      • autoimmune thyroid disease
      • infertility
      • neurological disorders
      • osteoporosis and osteomalacia
      • abnormal clotting secondary to malabsorption
      • dermatitis herpetiformis
      • irritable bowel syndrome
    • check body weight, height and body mass index (BMI) to assess for signs of malnutrition
    • examine for:
      • angular stomatitis
      • skin rashes, including dermatitis herpetiformis
      • evidence of anaemia
      • abdominal tenderness and distension

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8.  Serological testing

Quick info:
Before testing for coeliac disease:

  • confirm that the person has eaten gluten-containing foods (with wheat, barley, or rye as an ingredient) e.g. at least 4 slices of bread a day for a minimum of 4 weeks before testing
  • ensure that the person understands what coeliac disease is
  • If on a gluten free diet there may be a false negative result
  • explain that:
    • serological tests (including commercially available self-tests) do not diagnose coeliac disease, but help indicate whether further testing is needed
    • if the test is positive, they will be referred for upper GI endoscopy
    • if the test is negative, coeliac disease is unlikely, but it could develop in the future

NB: Seronegative coeliac disease does exist.
Send blood for coeliac disease serology:

  • the National Institute for Health and Clinical Excellence (NICE) recommends immunoglobulin A tissue transglutaminase antibody (IgA tTGA) as the first choice test [3]:
    • NICE advises reserving immunoglobulin A endomysial antibodies (IgA EMA) testing if the result of the IgA tTGA test is equivocal
  • Leeds pathology will test IgA EMA automatically if IgA tTG is equivocal

IgA deficiency leads to false negative results from IgA tTGA or IgA EMA tests:
If strong clinical suspicion but negative serology consider checking IgA

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9.  Positive result - Advise Patient Not to Start Gluten Free Diet

Quick info:
Following a positive serology test:

  • offer referral to gastrointestinal specialist for endoscopy and biopsy of small intestine to confirm or exclude coeliac disease
  • advise the patient not to start a gluten-free diet until diagnosis is confirmed by intestinal biopsy

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10. Negative Result Seek Alternative Diagnosis

Quick info:

  • testing for coeliac auto-antibodies is satisfactory to exclude coeliac disease in the majority of cases as the best serological tests have 95% negative predictive value
  • if serology tests are negative, advise that this excludes coeliac disease at the moment, but it does not rule out the development of coeliac disease in the future
  • seronegative coeliac disease does exist
  • if there is a high clinical suspicion of coeliac disease despite repeatedly negative serology, formal referral to specialist gastroenterologist for assessment and duodenal biopsy is advised

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11. High Clinical Suspicion despite Negative / Equivocal Serology

Quick info:
Options include:

  • Refer for gastroenterologist opinion
  • Offer Gluten Challenge (4 slices of bread per day for minimum of 4 weeks) and repeat blood test
  • Repeat test after set interval (minimum of 6 months.)

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12. Investigations to Accompany Referral

Quick info:
Please consider the following immediate investigations to accompany the referral:

  • full blood count (FBC)
  • urea and electrolytes
  • liver function tests (LFTs)
  • serum calcium and vitamin D
  • clotting studies
  • haematinics
  • thyroid function tests (TFTs)
  • Upper GI endoscopy if patient is fit and willing and on a normal diet

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13. Refer To Gastroenterology

Quick info:
Coeliac Disease Referral Form
Patients should not be routinely referred to direct access diagnostic providers for upper gi endoscopic procedure to confirm a diagnosis of coeliac disease.
In the event that direct access diagnostic providers, suspect coeliac disease following an endoscopic procedure, they should liaise with primary care to ensure accompanying blood test results and DEXA Scan to aid diagnosis by gastroenterology services and /or dietetic services. Community diagnostic providers are not responsible for initial patient management at this point but are responsible for onward referral recommendation.

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14. Initial Patient Management

Quick info:
First Clinic appointment may include the following:
Establish diagnosis
Review investigations or take bloods if not taken previously - consider tTG, HLA, D2 biopsy
If anaemic consider referal for colonoscopy.
Full Blood Count
B12 Folate Ferritin
Ca PO4 Vit D
Dietetic review - commence gluten free diet.
Consider Calceos T bd po
Treat deficiencies Coeliac UK membership Coeliac UK buddy scheme etc
Recommend GFD prescriptions
Recommend PneumoVax
Recommend screen first degree relatives.
Discuss Gluten Free prescription options

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15. Subsequent Follow-up Management

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Subsequent hospital clinic appointment may include the following:
Review of progress
Review gluten free diet
Review problems
Further dietetic follow-up on case by case basis
Consider repeat endoscopy at 18 to 24 months on gluten free diet.

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16. Who to Discharge From Routine Follow-up

Quick info:
Who to discharge?
Where there is a clear diagnosis (specialist may decide to keep latent/silent coeliac patients under review) Symptom resolved
Well motivated with diet.
Good histological response - if second endoscopy.
Dietetic Review
LTHT gastroenterologists suggest current best practice advice is to review coeliac patients at one year post discharge via a dietetic review – patients may therefore be discharged from routine follow-up once stable for a dietetic review one year on (see section 18).

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17. Symptoms Persist - Continued Gastroenterology Management

Quick info:
Points to consider:

  • Is it really coeliac disease - consider other causes of villous atrophy
  • Dietetic review
  • Other causes of diarrhoea associated with coeliac disease (e.g. microscopic colitis, pancreatic insufficiency, lactose intolerance)
  • Refractory coeliac disease
  • Complications of coeliac disease (e.g. ulcerative jejunitis, lymphoma)
  • Consider advice and guidance request or referral into secondary care gastroenterology services
  • Bone density scanning is recommended for women at the menopause and males at aged 55 with coeliac disease. If a scan is abnormal a further scan should be arranged every three years.

Appropriate actions may include:

  • arranging blood tests
  • correcting any deficiencies e.g. Ca, Vit D, folic acid etc
  • consider IBS medication e.g. colpermin, buscopan, amitryptiline if bloating
  • arranging a bone density scan if appropriate
  • arranging pneumococcal vaccination as necessary
  • If clinical concern - refer to gastroenterology. See next box for more details including red flag signs

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18. Dietetic Review Post Discharge from Routine Follow-up (Patient Stable)

Quick info:
Annual Dietetic Review
LTHT gastroenteriologists suggest current best practice advice is to review coeliac patients one year post discharge as stable.
Annual Dietetic Review

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19. Criteria For Re-Referral To Gastroenterology

Quick info:
Return to clinic if:

  • Ongoing symptoms after dietetic review.
  • New symptoms after dietetic review.
  • Red flag symptoms - Clinicians should be aware of the possibility of developing associated autoimmune disease and small bowel lymphoma and investigate and refer patients with further symptoms accordingly. 2ww colorectal cancer pathway may also be considered.
  • Recurrent anaemia.

Key Dates
Published: 17-Feb-2015,  by Leeds
Valid until: 01-Jun-2016
Reviewed and republished – March 2021