Coeliac Disease

Overview

There is currently no agreed local pathway for diagnosis, management or follow up of coeliac disease. The following guidelines have been put together by Dr Rob Adams (Clinical Lead for Remedy) with reference to NICE Guidelines, Coeliac UK and advice from Dr Michael Sproat (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 (1) for details:

In addition the following should be considered:

• The most likely presentation is a combination of microcytic anaemia, past or present, a family history of the disease, and feeling tired all the time (3).
• High-risk groups include those with iron deficiency anaemia, Down’s syndrome, type 1 diabetes mellitus, osteoporosis  and suspected IBS where the coeliac prevalence typically varies between 2% and 5% (4)

Coeliac Disease in Children (under 16)

Please see the Coeliac Disease (children) page

Who to Refer

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 the above tests are negative then coeliac disease can be ruled out, but testing should be reconsidered if new symptoms or concerns arise. 

Non-Biopsy Diagnosis

Interim guidance was published by the BSG during COVID-19 (June 2020)** that supports making a clinical diagnosis of coeliac disease without OGD/D2 biopsy in patients who are:

• Under 55 years old
• TTG>10x upper limit normal and EMA +ve
• Typical symptoms

See the full guidance for details:

BSG Interim Guidance: COVID-19 specific non-biopsy protocol for those with suspected coeliac disease - The British Society of Gastroenterology

**Update November 2023 - no follow up guideline has yet been published but local gastroenterologists and endoscopy providers continue to support the above approach for this group of patients**

Biopsy Diagnosis

If blood tests suggest coeliac disease and the above protocol guidance does not apply, then confirmation by duodenal biopsy is required.

This can be requested via one of the direct access endoscopy services - details can be found on the Endoscopy page (Please note that Prime will accept referrals for patients aged 18 or over. PPG will see patients aged 16 or over). See also Referral Guidance below.

Testing patients already on a gluten free diet

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.

Red Flags

The symptoms and signs of coeliac disease are often non-specific, and it may present with intestinal and extra-intestinal manifestations (1).

Consider appropriate investigations to exclude other causes of symptoms such as anaemia, weight loss, dyspepsia, changes in bowel habit or abdominal pain/bloating:.

• Lower GI - USC (2WW) (Remedy BNSSG ICB)
• Upper GI - USC (2WW) (Remedy BNSSG ICB)
• Gynaecology - USC (2WW) (Remedy BNSSG ICB)

What to do before referral

Before Diagnosis

Bloods - Bloods should be done to screen for coeliac disease and to exclude other possible diagnoses or associated conditions as appropriate and should include (2):

• TTG antibodies - sceening test (while still eating diet containing gluten). Refer for duodenal biopsy if positive.
• FBC, ferritin, folate - shows anaemia in 50%; iron and folate deficiency are both common
• LFT and calcium

Other investigations - consider investigations to help rule out other bowel conditions if indicated e.g. FIT, Faecal calprotectin.

After Diagnosis

Patient information - see Coeliac UK website (3)

Gluten free foods  - Gluten free foods are no longer available to prescribe to patients aged 18 and over. Prescriptions are still available for those patients aged under 18 from a limited choice of products.

Please see the BNSSG Formulary for guidance on prescribing of gluten free foods.

Supplements - Ensure patients are aware of requirement for increased calcium intake/ supplementation and advise on OTC vitamin D supplementation

Associated conditions - Consider testing for associated conditions, such as type 1 diabetes mellitus or autoimmune thyroid disease (1).

Follow up

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.

Some PCN dieticians will now offer an annual review.

Coeliac UK advises annual review and makes suggestions about what should be addressed at this appointment.

Referral

Diagnosis - Referral for Duodenal Biopsy

Patients with a positive TTG antibody should be offered duodenal biopsy (again while still eating a diet containing gluten). This can be requested via one of the direct access endoscopy services using the standard BNSSG proforma (embedded in EMIS) - details can be found on the Endoscopy page. Please note that Prime will accept referrals for patients aged 18 or over. PPG will see patients aged 16 or over. Please include TTG antibody result with your referral.

Referrals to secondary care endoscopy services should be avoided due to capacity issues, unless a patient does not meet referral criteria for the direct endoscopy providers above. Patients that cannot  be referred to direct access endoscopy should be referred to secondary care for further investigation (under 16 to paediatric gastroenterology, 16 years old and above to adult gastroenterology).

Treatment - Referral to Dietician

If diagnosis if confirmed (either non-biopsy protocol or biopsy positive) then patients should be referred to a suitably trained dietician (either PCN dietician if available or secondary care dietician with interest in coeliac disease) who will advise on diet and monitoring of their condition. The Community Dietician Service (Sirona) does not currently offer a service for patients with Coeliac Disease. See the Nutrition & Dietetics for details on referral.

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.

Referral to Community Gastroenterology may also be helpful if required for first line management and advice (they will not take on routine management)

Resources

Guidelines

(1) Coeliac disease | Health topics A to Z | CKS | NICE

(2) Coeliac Disease (Causes, Symptoms and Treatment) | Patient

(3) Coeliac disease in primary care: case finding study - PMC (nih.gov)

(4) BSG guidelines on the diagnosis and management of adult coeliac disease - The British Society of Gastroenterology

Patient support

(3) Coeliac UK

Efforts are made to ensure the accuracy and agreement of these guidelines, including any content uploaded, referred to or linked to from the system. However, BNSSG ICB cannot guarantee this. This guidance does not override the individual responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or guardian or carer, in accordance with the mental capacity act, and informed by the summary of product characteristics of any drugs they are considering. Practitioners are required to perform their duties in accordance with the law and their regulators and nothing in this guidance should be interpreted in a way that would be inconsistent with compliance with those duties.

Information provided through Remedy is continually updated so please be aware any printed copies may quickly become out of date.