Background
Coeliac disease is common (affecting approximately 1% of the general population).
The condition is more common in those with:
- A positive family history
- Other autoimmune disease e.g. Type 1 Diabetes, thyroid disease
- Chromosomal abnormalities e.g. Down Syndrome
- Classical abdominal symptoms may be vague or absent.
Since January 2020 the management of Coeliac disease in NHS Lothian is dietician-led in line with Scottish Government Policy.
Since 2020 NHS Lothian has adopted a no-biopsy diagnosis for symptomatic adult patients with IgA tTG ≥ 50 two occasions, with the approval of the British Society of Gastroenterology. In Paediatrics, a no-biopsy strategy has been in place for a number of years.
The NHS LOTHIAN DIETETIC LED COELIAC PATHWAY FLOWCHART JUNE 2024 outlines a summary of how Coeliac Disease is diagnosed and managed in NHS Lothian.
Please remember that when referring patients all patients must continue to eat adequate amounts of gluten until instructed otherwise by secondary care.
Who to refer:
Patients with IgA tTG antibody >10 units/ml
Patients with IgA tTG antibody 5-10 units/ml on two occasions 3-months apart
Patients with selective IgA deficiency and positive IgG tTG (>10 units/ml)
All patients must continue to eat adequate amounts of gluten until instructed otherwise by secondary care
Patients can be provided with this information sheet on why and how they need to keep eating gluten until they have been told to stop by secondary care: PIL Continuing to eat gluten when a diagnosis of coeliac disease is being considered
How to refer:
Refer to Gastroenterology – Medical via SCI Gateway using the following pathways:
- RIE >> Gatroenterology – Medical >> LI Coeliac Referral
- SJH >> Gatroenterology – Medical >> LI Coeliac Referral
- WGH >> Gatroenterology – Medical >> LI Coeliac Referral
Decision not to refer:
Occasionally in Primary Care a decision may be made to not refer a patient who has IgA tTG antibody results indicative of a Coeliac diagnosis (e.g. patient moving to a different area / country). In these rare cases it is very helpful if Primary Care can inform the Coeliac service that despite the positive lab results a referral is not going to be made. This can be done by emailing the Coeliac Service inbox loth.coeliacservice@nhs.scot (Email for professional use only)
Whom to test:
Testing with coeliac serology is recommended for all patients presenting with:
- Unexplained iron deficiency anaemia
- Prolonged fatigue
- Chronic or intermittent diarrhoea
- Symptoms suggestive of Irritable Bowel Syndrome
- Sudden or unexpected weight loss
- Failure to thrive or faltering growth in children
- Persistent or unexplained GI symptoms including nausea and/or vomiting
Testing should be considered in:
- Unexplained recurrent aphthous mouth ulcers or angular stomatitis
- Unexplained persistently raised liver enzymes
- Persistent or unexplained constipation
- Unexplained reduced bone mineral density or metabolic bone disease e.g. osteomalacia
- Unexplained infertility
- Unexplained neurological symptoms, especially ataxia
- Lymphoma
- Sjogrens Syndrome
A positive serological test for Coeliac Disease depends upon the interaction between dietary gluten and the small intestinal mucosa. Thus, if gluten is withdrawn from the diet, the tests become unreliable as a diagnostic tool.
All patients must continue to eat adequate amounts of gluten until instructed otherwise by secondary care.
Patients can be provided with this information sheet on why and how they need to keep eating gluten until they have been told to stop by secondary care: PIL Continuing to eat gluten when a diagnosis of coeliac disease is being considered
NHS-LOTHIAN-DIETETIC-LED-COELIAC-PATHWAY-FLOWCHART-JUNE-2024.pdf
NHS LOTHIAN COELIAC SERVICE REVIEW April 2020.pdf
Gluten Free Food Service Registration Form:
https://services.nhslothian.scot/GlutenFreeFoodService/Documents/GlutenFreeFoodRegistrationForm.pdf
NICE NG20: https://www.nice.org.uk/guidance/ng20
NHS Choices Coeliac Disease: https://www.nhs.uk/conditions/coeliac-disease/
Coeliac UK: https://www.coeliac.org.uk/information-and-support/coeliac-disease/about-coeliac-disease/
