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Coeliac Disease in Children Care Pathway Overview

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Red Flags
  • Significant weight loss
  • Significant anaemia 

 NOTE: if red flags present, or symptoms are felt to be significant do not delay referral while waiting on blood test result in primary care, refer to Dr Rushforth (paediatric gastroenterology clinic) or via on call paediatric team if more urgent referral required

If there is rectal bleeding in presence of loose stools then inflammatory bowel disease needs to be considered

Presentation

Common symptoms

Diarrhoea is one of the more common symptoms of coeliac disease. However, many other symptoms can be present Malabsorption can also lead to stools containing abnormally high levels of fat (steatorrhoea). This can make stools more smelly than usual, pale, greasy and frothy. They may also be difficult to flush down the toilet.

Other common gut-related symptoms include:

  • abdominal pain
  • bloating and wind
  • indigestion
  • constipation
  • vomiting

And more general symptoms may include:

  • unexpected weight loss
  • an itchy rash - Dermatitis herpetiformis (unusual in children)
  • dental enamel defects
  • delayed puberty  
  • poor growth
  • unexplained anaemia or iron deficiency, particularly if unresponsive to treatment
  • fatigue

Testing is also recommended if the patient has a first-degree relative with coeliac disease

Differential Diagnosis
Initial Primary Care Assessment

If patient is presenting with suspected Coeliac disease with no red flags, refer for a Tissue Transglutaminase (TTG) blood test ensuring patient has gluten in their diet.

Initial Primary Care Management
  • Do not undertake Human Leukocyte Antigen (HLA) test
  • Do not offer serological testing for coeliac disease in infants before gluten has been introduced into the diet.
  • Advise family to make NO change to diet and to continue with a gluten containing diet until reviewed by, or contacted by, secondary care to advise otherwise.
When to Refer
  • Refer children and young people with positive serological test results to a paediatric gastroenterologist or paediatrician with a specialist interest in gastroenterology for further investigation for coeliac disease.
  • Refer children and young people with negative serological test results to a paediatric gastroenterology for further assessment if coeliac disease is still clinically suspected.

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

Paediatric Gastroenterology - GHNHSFT

In secondary care children will be seen in a paediatric coeliac clinic by a paediatric gastroenterology lead and dietician. Confirmation of coeliac disease with either additional blood tests or an endoscopy will be undertaken and treatment with a gluten free diet started if diagnosis confirmed.

Ongoing Primary Care

Start strict Gluten Free Diet (GFD) after diagnosis confirmed. Gluten Free Diet (GFD) will be a lifelong requirement and needs regular paediatric dietetic support, ideally initiated within -2-4 weeks of diagnosis. Children and young people should be followed up at 4-6 monthly intervals in the first year and thereafter annually. Additional input may be required if there are problems with dietary adherence.

Pneumococcal vaccine is now recommended for patients with coeliac disease (Coeliac UK guidelines). Many children will already have had this as part of their routine immunisation programme.

If additional vitamins or calcium required other than over the counter preparations, GP will be asked to prescribe.

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