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Primary care management and referral guideline Primary care management and referral guideline

Coeliac Disease in Children and Adolescents – Management and referral guideline

Purpose

Primary care management and referral guidelines contain condition-based information for GPs about when to refer a patient, assessment and management measures that should be taken prior to submitting a referral, and what should be included in a referral to the relevant outpatient department or specialist service.

Introduction

  • Coeliac disease is a systemic, chronic inflammatory condition caused by an immune mediated permanent intolerance to gluten. Gluten is a protein found in wheat, rye, barley, and oats.
  • It occurs in genetically predisposed individuals, and the only effective treatment at present is lifelong avoidance of gluten in the diet. Coeliac disease may occur at any time in life.
  • Coeliac disease has a prevalence of 1% in Australia, with 85% of people with coeliac disease remaining undiagnosed.
  • It is characterised by a variable combination of gluten dependent clinical manifestations.
  • Children with undiagnosed or untreated coeliac disease are at increased risk of malnutrition, developmental delay, liver disease, etc.

The diagnosis is generally made by tissue diagnosis, with biopsy obtained by gastroscopy when the patient is on a gluten containing diet. Serology helps indicate which patients need a biopsy. There is a small subset of the population whose anti-tTG is so elevated that if a further marker is positive (whilst on a gluten containing diet) a biopsy is not required for the diagnosis. This should be decided in consultation with a paediatric gastroenterologist.

Assessment

Take a history, checking for:

  • symptoms suggestive of coeliac disease – determine frequency, severity, and duration. Symptoms are non specific and some patients may be asymptomatic.
    Symptoms suggestive of coeliac disease

    • Chronic or intermittent diarrhoea or constipation:
      • Constipation is less common and generally occurs in younger children and adolescents.
      • Younger children are more likely to present with chronic diarrhoea and nutritional problems e.g., weight loss, malnutrition.
    • Poor appetite
    • Recurrent abdominal discomfort, cramping, or distension or bloating
    • Poor growth , weight loss, short stature
    • Recurrent headaches
    • Prolonged fatigue
    • Persistent or unexplained nausea, vomiting, or reflux
    • Recurrent aphthous ulcers
    • Arthralgia
    • Mood changes e.g., irritability, depressed mood
  • introduction and current intake of gluten, and other dietary factors related to symptoms (if any).
  • family history of coeliac disease – consider screening, especially if first degree relatives affected.
  • associated conditions – consider testing for coeliac regardless of symptoms.
    Associated conditions

    • Type 1 diabetes
    • Selective IgA deficiency
    • Autoimmune thyroid disorders
    • Down (Trisomy 21), Turner (45, XO), and Williams Syndromes
    • Iron deficiency
    • Lactose intolerance
    • Dental and enamel defects
    • Dermatitis herpetiformis (itchy, blistering rash on trunk and extensor surfaces) – uncommon before adolescence
    • Unexplained liver dysfunction
    • Unexplained neurological or psychiatric conditions e.g., developmental delay, learning difficulties, seizures, ataxia
    • Autoimmune arthropathies e.g., Juvenile arthritis

Examine the patient. Check:

  • height and weight, and plot in adequate chart – consider poor growth.
    Poor growth
    Consider poor growth if any of:

    • Growth crossing down over centile lines
    • Weighing less than:
      • 6 kg at 6 months
      • 8 kg at 1 year
      • 10 kg at 2 years
      • 16 kg at 5 years
  • abdomen for masses or enlarged organs.
  • skin for rashes, e.g. dermatitis herpetiformis.
  • mouth for aphthous ulcers or angular stomatitis.
  • for signs of anaemia.

Consider differential diagnosis.

Differential diagnosis

  • Irritable bowel syndrome (IBS) – always consider and exclude coeliac disease before making this diagnosis
  • Non‑coeliac gluten sensitivity
  • Inflammatory bowel disease
  • Infective gastroenteritis
  • Food allergies or intolerances

Arrange investigations:

  • If suspected coeliac disease, arrange:
    • FBC, E/LFT, iron studies, CRP.
    • coeliac serology
      Coeliac serology

      • Arrange tissue transglutaminase (anti-tTG IgA and total IgA).
      • Gliadin antibodies are generally no longer used as they have poor specificity for coeliac disease. Antigliadin IgG can be commonly elevated in children despite having normal biopsies.
      • The patient must still be eating gluten for 6 weeks before the test.
      • If parent unwilling for patient to return to a gluten‑containing diet, arrange HLA DQ gene test as well as coeliac serologies. This will not be a definitive test unless the HLA genes are negative. The patient may still require a gluten challenge.
        HLA DQ gene test

        • The presence of these genes indicates risk susceptibility for coeliac disease.
        • These genes are present in 30% of the population.
        • A negative test for these genes excludes coeliac disease.
  • Also consider:
    • stool MCS and PCR.
    • faecal calprotectin (no Medicare rebate).
    • thyroid function tests (TFT)

Management

Management based on serology results

If the child is aged < 2 years, the serology is likely to be inaccurate. If FTT or significant concern, refer to your local paediatric gastroenterology service.

If IgA deficiency and strong suspicion of Coeliac disease, refer to your local paediatric gastroenterology service.

If positive serology, refer to your local paediatric gastroenterology service.

  • Endoscopy and biopsy of small intestine will be performed in most cases to confirm diagnosis (gold standard).
  • Advise the patient to maintain gluten intake until diagnosis is confirmed.
  • Selected paediatric patients may be diagnosed based on symptoms and serology results alone, and diagnosis will be confirmed by normalisation of antibody levels on a gluten-free diet.

If negative serology (i.e., anti‑tTG IgA and DGP IgG) and coeliac disease still suspected, perform a HLA DQ gene test.

HLA DQ gene test

  • The presence of these genes indicates risk susceptibility for coeliac disease.
  • These genes are present in 30% of the population.
  • A negative test for these genes excludes coeliac disease.
  • If gene test is positive, this does not mean the patient has coeliac disease. They have a risk of developing it in the future. Discuss with your local paediatric team or paediatric gastroenterology team.
  • If gene test is negative:
    • consider alternative diagnosis, including non coeliac gluten sensitivity.
      Non coeliac gluten sensitivity

      • Coeliac‑type symptoms upon exposure to gluten, despite a negative coeliac disease diagnosis.
      • Not caused by allergic or autoimmune mechanisms.
      • Not associated with an increased risk of auto-immune disorders or intestinal malignancy.
      • Unlikely to result in malabsorption or nutritional deficiencies.
      • Treatment options include:
        • following a gluten-free diet (symptoms may not be completely resolved).
        • a low FODMAPs (Fermentable Oligo-, Di-, and Monosaccharides and Polyols) diet.
      • Refer to an accredited practising dietitian for dietary investigation and elimination as required.
    • Refer to your local paediatric gastroenterology service if persistent concerns.

Management after confirmation of coeliac disease

Ensure the parent or patient understands that a strict lifelong gluten-free diet must be maintained.

Gluten-free diet
See Gluten Free Diet handout.

  • Patients eating a gluten-free diet must avoid:
    • products made of or containing ingredients derived from:
      • wheat and wheat varieties, e.g. spelt, kamut, semolina, triticale.
      • rye.
      • barley.
      • oats – there is some controversy regarding the toxicity of oats in patients with coeliac disease. See Coeliac Australia – Oats and the Gluten Free Diet.
    • foods or beverages containing malt.
    • foods that can be contaminated with gluten‑containing ingredients, e.g. during processing or packaging.
    • some medications or nutrition supplements which may be made with products containing gluten.
  • It is important to ensure that the diet is also balanced, containing a variety of foods from all food groups.
  • Fibre intake is often inadequate, and can be increased by consuming:
    • adequate fruit and vegetables.
    • legumes.
    • lentils.
    • rice bran.
    • psyllium husks.
  • Suitable gluten-free foods include naturally gluten-free foods:
    • fruit and vegetables.
    • fresh meats.
    • eggs.
    • nuts and legumes.
    • milk (unflavoured only).
    • fats and oils.
    • gluten-free grains, e.g. rice, corn.
  • Other considerations:
    • Products labelled ‘gluten-free’ contain no detectable gluten and are gluten-free according to their ingredients.
    • Look for the Coeliac Australia Endorsement logo.
    • Products containing ingredients derived from or containing wheat, rye, barley, or oats must be declared on the ingredients list and, if cross‑contamination with such ingredients is possible, the statement ‘may contain gluten’ must be included.
    • There is an abundance of gluten-free options available at restaurants and cafés. However, strict food preparation and handling standards are not compulsory in Australia.
  • Advise the parent or patient to join Coeliac Queensland
  • Refer to an accredited practising dietitian experienced in coeliac disease for education and monitoring. Complete General Practice Management Plan (GPMP) and Team Care Arrangements (TCA) if appropriate.
    Education and monitoring

    • Education includes:
      • strict gluten-free diet.
      • which foods contain gluten.
      • reading labels.
      • safe food preparation.
      • how to avoid cross‑contamination.
      • shopping.
      • eating out.
      • risks of not following a gluten-free diet.
      • choosing low glycaemic index sources of carbohydrate and monitoring sugar intake.
      • how to access and use relevant and credible sources of information.
    • Monitoring includes regularly checking:
      • adherence to a strict gluten-free diet.
      • nutrition status and dietary adequacy including iron studies.
      • bone mineral density.
      • weight and related problems.
      • symptoms and symptom management.
      • for other dietary intolerances, e.g. lactose intolerance, FODMAPs (Fermentable, Oligo-, Di- and Monosaccharides and Polyols), and food chemical sensitivity.

Monitor patients for disease activity and complications.

Monitoring for disease activity and complications
Every 6 months for the first year, and then annually:

  • Check for resolution of symptoms and monitor growth.
  • Test coeliac serology (i.e., anti-tTG IgA and DGP IgG antibodies):
    • Falling coeliac serology reflects a gluten‑free diet and in most people, it will be negative after a year on a gluten‑free diet.
    • Anti-tTG IgA is not a reliable marker for recovery from villous atrophy.
  • Look for symptoms of, or arrange investigations for, complications and associated auto-immune conditions:
    • FBC for idiopathic thrombocytopenic purpura and autoimmune haemolytic anaemia
    • E/LFT, including glucose (diabetes, autoimmune hepatitis)
    • Thyroid function tests
    • Iron studies and CRP

Suggest screening all first degree relatives with coeliac serology.

Ensure childhood vaccinations are up to date, and consider whether vaccinations additional to the National Immunisation Program may be indicated, e.g. influenza, meningococcal disease, pneumococcal disease. Note that coeliac disease can be associated with splenic dysfunction which may influence immunisation recommendations.

Monitor for symptoms of anxiety and depression, as patients may have difficulty with:

  • coping with the diagnosis.
  • adhering to a strict gluten‑free diet.
  • other lifestyle changes.

If bowel symptoms persist despite gluten-free diet, consider:

  • checking that the patient is following a strict gluten‑free diet (with no inadvertent gluten consumption).
  • trialling a low-lactose or low‑fructose diet.
  • referring to your local paediatric gastroenterology service for further investigation and management.

If any other concerns, discuss with your local paediatric gastroenterology team.

When to refer

  • Refer to your local paediatric gastroenterology service if:
    • positive coeliac serology – anti-tTG IgA positive
    • diagnosis uncertainty or persistent concerns.
    • non‑resolving symptoms or related complications.
  • Refer to an accredited practising dietitian for:
    • all patients with coeliac disease.
    • suspected non‑coeliac gluten sensitivity.
  • If negative serology and positive HLA DQ gene test, discuss with your local paediatric team or paediatric gastroenterology team.
  • If any other concerns, discuss with your local paediatric gastroenterology team.

Referring to your local Paediatric services

Public

Check the patient’s catchment area before requesting assessment. When services are available in the patient’s local area, refer the patient to the local hospital.

Queensland Children’s Hospital

Referral can be made by either:

  • GP Smart Referral via BP or Medical Director
  • Secure messaging
    Secure messaging
    Send a written request to the Referral Centre via eReferral
    (Medical Objects ID: RQ402900084, HealthLink ID: qldrchld):

    • To download templates, see Referral Forms.
    • If unable to attach investigations or use secure messaging, fax to 1300 407 281.

    For more information, contact the Referral Centre:
    P.O. Box 3474, South Brisbane QLD 4101
    Phone 1300 762 831
    Fax 1300 407 281

For chronic and recurrent abdominal pain Check the minimum referral criteriaand insert the required information into referral https://cpc.health.qld.gov.au/Condition/254/chronic-and-recurrent-abdominal-pain

For chronic diarrhoea and vomiting Check the minimum referral criteria and insert the required information into referral https://cpc.health.qld.gov.au/Condition/255/chronic-diarrhoea-andor-persistent-vomiting

Private

Search for a provider via the National Health Services Directory.

Guideline approval and disclaimer

Guideline approval history
Version no. 1.0 Approval date 28/02/2019 Review date 1/03/2022

Disclaimer

Referral guidelines contain condition-based information for GPs about when to refer a patient, assessment and management measures that should be taken prior to submitting a referral, and what should be included in a referral to the relevant outpatient department or specialist service.
Our referral guidelines aim to help GPs decide which tests and treatments are appropriate for their patients based on their presenting symptoms and previous medical history. Consulting the relevant referral guideline before a patient is referred on to a specialist service may mean that an appointment can be booked sooner and the outcome of their consultation is more conclusive. It can also eliminate the need to refer a patient where preliminary tests rule out the need for specialist intervention.
The information contained within our referral guidelines has been developed in collaboration with specialist medical professionals. They are intended to support referring GPs and are in no way intended to replace their professional medical judgement.

Resources

For health professionals
Further information

For families

Contact details

Hospital Switchboard
(Ask for the General Paediatric Registrar)
t: 07 3068 1111

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