Principles of Management
There is currently no agreed local pathway for diagnosis, management or follow up of coeliac disease and as a result management is inconsistent and patchy. The following guidelines have been put together by Dr Rob Adams (GP) with reference to NICE Guidelines, Coeliac UK and advice from Dr Mike Cohen (local gastroenterology GPwSI at PRIME).
When to Suspect Coeliac Disease
There are a wide range of GI symptoms that can be associated with coeliac disease so GPs should have a low threshold for testing. See CKS guidelines for details:
Mike Cohen from PRIME also makes the following comments:
‘GP’s should be aware that the commonest presentation of coeliac disease these days is iron deficiency anaemia. See reference to Harold Hin’s excellent paper - Coeliac disease in primary care: case finding study - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC27697/’
‘I have never found a case of coeliac disease in patients who were TATT. ‘
‘GP’s should also look out for it in patients with Type 1 DM and those females with primary infertility. More common in patients with Down’s Syndrome as well. ‘
Patients suspected of having coeliac disease should have TTG antibodies in primary care while on a diet containing gluten. If the patient has been on a gluten free diet then this may return a false negative result. Patients on a gluten free diet should therefore be advised to eat gluten at least twice a day for 6 weeks prior to testing. If blood tests suggest coeliac disease then confirmation by duodenal biopsy is required- see Referral Guidance section below.
If the above tests are negative then coeliac disease can be ruled out but testing should be reconsidered if new symptoms or concerns arise.
If a patient is already on a gluten free diet and is reluctant to start eating gluten again to obtain a diagnosis then the pros and cons of a life-long gluten free diet should be discussed. Please note that gluten free products are not prescribable on the NHS without a confirmed diagnosis. (In future it may be that gluten free products will not be prescribable at all on the NHS whether diagnosis is confirmed or not. The DoH is currently reviewing this.)
Mike Cohen comments:
‘Many patients are becoming gluten intolerant or have a wheat intolerance rather than coeliac disease.’
Referral to a dietician with special interest in coeliac disease should be made for initial assessment and management. See Referral Guidance section below for advice on referral to a specialist dietician (currently only available in secondary care)
There is also advice on the Coeliac UK website.
The advice on follow up is not clear in NICE guidelines. Although it is suggested that patients should have annual bloods and dietician review the evidence for the effectiveness of this is lacking.
Coeliac UK advises annual review and makes suggestions about what should be addressed at this appointment:
Mike Cohen comments:
‘Common sense to me dictates that we should not over medicalise these patients. As a GP I did an annual review, asked about symptoms, 'how was the diet', 'could they get GF products'. I would advise tests every 2 years (FBC, ferritin, folate, TSH) plus an appointment with dietician if they are having problems.’
Referral for Duodenal Biopsy
Patients with a positive TTG antibody should be offered duodenal biopsy (again while still eating a diet containing gluten) . This is available locally at PRIME or EGTC via e-referral using the standard Care UK form.
Referrals to secondary care endoscopy services should be avoided due to capacity issues, unless a patient does not meet referral criteria for the alternative endoscopy providers above.
Patients aged less than 18 cannot currently be referred to community based clinics and should be referred to secondary care for further investigation (under 16 to paediatric gastroenterology, 16 and 17 year olds to adult gastroenterology).
Referral to Dietician
If duodenal biopsy result is positive then patients should be referred to a secondary care dietician with interest in coeliac disease (available at NBT and UBHT) who will advise on diet and monitoring of their condition. Referral can be made directly and is not available via e-referral currently.
Children should be referred to the paediatric dietician service at Bristol Children's Hospital
Referral to Gastroenterologist
Referral of patients to a consultant gastroenterologist for coeliac disease is not routinely required. Exceptions are included in NICE guidelines and include:
Faltering growth in a child (referral to general paediatrics initially)
Red flag symptoms/signs (should be referred via 2WW according to cancer guidelines)
Complications or persistent symptoms or signs of coeliac disease despite adherence to a gluten-free diet.
Diagnostic uncertainty following negative coeliac screening.