Coeliac Disease


Coeliac disease is an autoimmune condition in which dietary proteins, known as glutens, activate an abnormal mucosal response with chronic inflammation and damage (villous atrophy) to the lining of the small intestine.  It can present with a wide range of clinical features, both gastrointestinal (such as indigestion, diarrhoea, abdominal pain, bloating, and constipation) and non-gastrointestinal (such as fatigue, anaemia, dermatitis herpetiformis, osteoporosis, fertility problems, short stature, delayed puberty, and peripheral neuropathy).  Population screening data suggest that the incidence of coeliac disease in the UK is 1 in 100 people, and is approximately twice as common in females than males


When to suspect coeliac disease

  1. Suspect coeliac disease, and offer serology testing to a person with:
    1. Persistent, unexplained abdominal or gastrointestinal symptoms such as indigestiondiarrhoea, abdominal bloating, and constipation
    2. Faltering growth in children
    3. Prolonged fatigue
    4. Unexpected weight loss
    5. Severe or persistent mouth ulcers
    6. Unexplained iron, vitamin B12, or folate deficiency
    7. Type 1 diabetes mellitus
    8. Autoimmune thyroid disease
    9. Irritable bowel syndrome in adults
    10. A first-degree relative with coeliac disease
  2. Consider serology testing for coeliac disease in a person with:
    1. A metabolic bone disorder such as osteomalacia or reduced bone mineral density
    2. Unexplained peripheral neuropathy or ataxia
    3. Unexplained recurrent miscarriage or subfertility
    4. Persistent, unexplained raised liver function tests
    5. Dental enamel defects
    6. Down's syndrome or Turner syndrome
  3. Consider re-testing if a person presents with new symptoms of coeliac disease, despite previous negative serology


How to test

  1. Before testing for coeliac disease:
    1. Confirm that the person has eaten gluten-containing foods (with wheat, barley, or rye as an ingredient) at least twice every day over the previous 6 weeks
    2. Explain that serological tests (including commercially available self-tests) do not diagnose coeliac disease, but instead indicate whether further testing is needed
  2. Send a blood sample for coeliac disease serology testing
    1. Use immunoglobulin (Ig)A tissue transglutaminase antibody (tTGA) and total IgA first-line. IgA endomysial antibody (EMA) can be used if IgA tTGA is unavailable, or in cases where it is weakly positive
  3. Consider referring younger children to a paediatrician for venepuncture, if needed
  4. Do not perform human leucocyte antigen (HLA) genetic testing in primary care to diagnose coeliac disease


Interpreting test results

If equivocal serology test result:

  1. For young people and adults — if the result of either immunoglobulin (Ig)A tissue transglutaminase antibody (tTGA) or IgA endomysial antibody (EMA) is equivocal, do the other test
  2. For children — if the result of either IgA tTGA or IgA EMA is equivocal, refer to a paediatric gastroenterologist for further investigation, which may include further serology testing, intestinal biopsy, human leucocyte antigen (HLA) genetic testing, or a combination of these


If negative serology test result:

  1. If the serology test (IgA tTGA or IgA EMA) is negativecheck for IgA deficiency if this has not already been done. If IgA deficiency is present, this will cause a false-negative specific IgA test, so test for specific IgG instead (IgG tTGA, IgG EMA, or IgG deamidated gliadin peptide [DGP]), depending on local laboratory protocols
  2. If serology tests are truly negative, advise the person that this excludes coeliac disease at present, but it does not rule out the possibility of developing coeliac disease in the future
  3. If serology tests are negative, but symptoms suggestive of coeliac disease persist, consider specialist referral


If positive serology test result:

  1. Refer young people and adults to a gastroenterologist for endoscopy and intestinal biopsy to confirm or exclude coeliac disease
  2. Refer children to a paediatric gastroenterologist or a paediatrician with a special interest in coeliac disease for further investigation to confirm or exclude coeliac disease. This may include further serology testing, intestinal biopsy, HLA genetic testing, or a combination of these
  3. The urgency of referral will depend on clinical judgement
  4. Advise the person that they should continue to eat gluten-containing foods (at least twice every day) until the intestinal biopsy has been performed


Management in primary care

Arrange annual review of a person with confirmed coeliac disease and ensure the following is covered: 

  1. Ensure the person has received adequate advice and information on coeliac disease and gluten-free diets and what foods to avoid.  See Coeliac UK for more information
  2. Assess the person's adherence to a nutritious, varied, gluten-free diet
    1. Review the type and quantity of gluten-free foods that have been prescribed, and adjust the prescription accordingly
    2. Do not routinely recommend nutritional supplements to prevent nutritional deficiencies
  3. Assess for symptoms and signs of coeliac disease, its complications and associated conditions:
    1. Ask about gastrointestinal symptoms such as diarrhoea, abdominal pain, and blood in the stools
    2. Measure body weight, height, and body mass index (BMI) to assess for signs of malnutrition (indicated by weight loss in adults, or faltering growth in children)
    3. Assess and manage osteoporosis risk
  4. Consider annual blood testing, including:
    1. Coeliac serology to help assess adherence to a gluten-free diet
    2. FBC and ferritin — to screen for anaemia
    3. TFTs — to screen for autoimmune thyroiditis
    4. LFTs — to screen for autoimmune hepatitis
    5. Vitamin D, vitamin B12, red cell folate, and serum calcium — to assess for deficiency
    6. Electrolytes —  to assess for Addison's disease
  5. If malabsorption, diarrhoea, or other symptoms recur or persist despite strictly adhering to a gluten-free diet, exclude, diagnose, and/or manage alternative conditions, complications, and specific deficiencies
  6. Refer the person to a gastroenterologist (or paediatric gastroenterologist) if there is:
    1. Faltering growth in a child
    2. Symptoms and signs suggestive of gastrointestinal cancer (e.g. unexplained blood in the stool)
    3. Complications, or persistent symptoms or signs of coeliac disease despite adherence to a gluten-free diet
  7. Consider referring the person to a dietitian if: 
    1. There is difficulty in assessing adherence to a gluten-free diet
    2. Poor adherence to a gluten-free diet is suspected
  8. Offer immunizations, if indicated, (e.g. for people with splenic dysfunction). For more information see the Public Health England publication of the Green Book: Immunisation against infectious disease
  9. Offer more frequent review if problems arise or if there is a change in clinical needs, (e.g. women who become pregnant)


Blood tests / Phlebotomy

If your practice does not have a practice nurse who is trained to take bloods, you can refer a patient to the Pathology Department at East Kent Hospitals for a blood test (find details here)

Alternatively, Buckland Hospital (Dover) and the Royal Victoria Hospital (Folkestone) both operate a walk-in service where no appointment is necessary, except for if the patient requires a Glucose Tolerance Test (GTT).  In the event that a GTT is required, please call 01304 222552 (for Buckland) and 01303 854484 (for Royal Victoria) to arrange a suitable appointment

Please ensure that the patient remembers to take with them their blood test form to the walk-in centres

Advice and Guidance is being made available for all specialties, and is being provided by consultant specialists at East Kent Hospitals.  To make a request or to check to if a query has been answered, you will need to log in via the electronic Referral System (eRS)

Click here for the "how to access" e-Referral Advice and Guidance Manual for instructions on how to make a request and check responses

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