Coeliac Disease | Right Decisions

Background

Coeliac disease (CD) is an autoimmune, gluten dependent enteropathy in genetically predisposed individuals and is reversible on a gluten free diet.

It is a common condition (potentially 1 in 100 individuals if we screened the general population) with a wide variation in its presentation. It remains underdiagnosed.

This pathway (updated from the MPPP pathway of 2020 to accommodate the adult ‘no-biopsy’ strategy) sets out a process of best practice to be followed in the diagnosis and treatment of patients suspected of having CD.

Pathway recommendations

Guidance for Primary Care

Presenting symptoms include:

Severe diarrhoea, excessive wind and/or constipation longer than 4 weeks duration.
Persistent or unexplained gastrointestinal symptoms, such as nausea and vomiting longer than 4 weeks duration.
Recurrent abdominal pain, cramping or bloating.
Iron, vitamin B12 or folic acid deficiency.

Symptoms meriting consideration of the diagnosis are detailed in the ‘References and Further Resources’ on pg. 5.

Ideally, a set of standard baseline bloods should be performed on the initial positive blood sample if the patient is found to have positive coeliac serology eg. to consider iron studies, Vitamin B12 and folate, Vitamin D, urea and electrolytes, creatinine, calcium, phosphate and magnesium, LFTs and TFTs. This might allow clinicians to address deficiencies even before an endoscopy and should ideally accompany the referral to the coeliac service. Note – in some health boards the laboratory will run these bloods in any patient with positive coeliac serology and in these regions the bloods do not need to be specifically requested.

Patients should remain on a gluten containing diet during investigations, including endoscopy if planned, to avoid the risk of false negative results.

Notes for Endoscopists

Scottish Government guidelines suggest patients requiring endoscopy should have their upper endoscopy within 6 weeks and is also in accordance with BSG guidelines but we acknowledge there are challenges with this timescale. Services should consider dedicated coeliac service lists to address the needs of this patient group.

Best practice suggests that when coeliac disease is suspected, even if the macroscopic appearances are normal, both D1 and D2 biopsies should be taken and should be single bites. D1 and D2 biopsies should be placed in separate pots. A minimum of 4 from D2 and 2 from D1.

If a patient has not had a coeliac serology test within 1 month of the upper endoscopy, then best practice suggests this should be repeated on the day of the endoscopy to allow optimal serology-histology correlation especially for patients who may have had a long wait for endoscopy.

Coeliac Disease pathway

Click on the image below to open the pathway

Notes and further information

Notes	Comments
1	Negative anti-tissue Transglutaminase (tTG) IgA result (possible false negative result). If tTG IgA negative and total IgA normal and clinical symptoms persist, these patients are unlikely to be coeliac but may require discussion or referral as serology negative coeliac disease may present in a minority of cases. If IgA deficient (sIgAD) and tTG IgG positive refer to Coeliac Service for further advice and action. The ‘no-biopsy’ strategy does not apply to these patients and endoscopy is required for diagnosis. Patients with sIgAD and GI symptoms but with negative serology may need further investigation (which may include endoscopy). If irritable bowel syndrome symptoms persist despite negative investigations for other causes, other management options may be appropriate (see IBS pathway).
2	If a patient with positive coeliac serology is deemed unsuitable for endoscopy, we would recommend that they are reviewed by Specialist Coeliac service Patients may decline endoscopy or may be unfit for the procedure. An individualised plan should be made for the patient by the Coeliac Service. The patients GP should also be advised of the outcome.
3	BONE HEALTH FRAX/Q-Fracture score will be calculated by the dietetic team with DEXA scan at 1-2 years post-diagnosis for those who qualify and will be requested by the coeliac service. The fracture risk scoring systems and the pathway recommendations have been discussed with Scottish bone metabolism teams. Bone health should be assessed by the coeliac dietitians prior to discharge from the coeliac service
4	VACCINATION Assess vaccine history and arrange pneumococcal vaccination. Adults with newly diagnosed coeliac disease should receive one pneumococcal vaccination (PCV20) unless the service determines a need for 5 yearly repeat vaccination (in those deemed to be hyposplenic by the coeliac service). Influenza A vaccination is recommended annually for all coeliac patients.
5	Dietetic Service and Final Appointment: Symptoms should be reassessed at one year. Follow up bloods including FBC, haematinics, vitamin D and coeliac serology should be checked at 12 months. Blood results sent to Dietitian and results discussed as appropriate. Ensure bone health risk scoring has been completed and DEXA requested if needed (result will be reviewed by the Coeliac service). Ensure patient has received pneumococcal vaccination and is receiving annual Flu A vaccination Ensure patient has engaged with the GFFS (dietitians will usually complete registration paperwork at first appointment) and is managing prescriptions directly with their pharmacy and is engaged with the GFFS annual health check (this is recommended for follow up for all age 16 and over). Ensure awareness of risk of possible other auto-immune conditions (eg. T1D, thyroid disease) and on future vaccination and pregnancy advice. Patients should be assessed and discharged from service as appropriate. Patients should remain in the service if any ongoing concerns. If discharged, emphasise importance of primary care engagement if new onset symptoms develop and patient provided with information for fast-track re-engagement with the coeliac service.

Further Information

Dietitians with an interest in coeliac disease should lead the service across all coeliac services
Services should consider their laboratory alerting them about all new positive results – this means that the coeliac service could pro-actively manage the next steps of the pathway and reduce patients inappropriately or prematurely going gluten free or allow a continued watch and wait strategy for some patients
A local service co-ordinator should be considered for the administrative work for the coeliac service
A named gastroenterologist for the coeliac service should be considered to support the service
A templated set of letters for notification of patients and GPs are available which could be shared and would allow harmonisation of management

The need for follow up serology as a proxy for mucosal recovery remains a matter of debate. Coeliac serology can take longer than 1 year to fully resolve even on strict GFD and has limitations on its utility with regards to correlation with mucosal healing. Symptom resolution therefore is an important aspect of the dietetic assessment (particularly adherence) at follow up in the context of improvement or normalisation of coeliac serology.

Those patients who are still symptomatic, having difficulty tolerating a GFD or if there is no improvement in coeliac serology should be offered ongoing further follow up and may need to be assessed in a consultant clinic.

References and resources

Patient Resources

Patient Information Leaflet (provided by your NHS Health Board)

Home - Coeliac UK

Coeliac disease | NHS inform

Coeliac Disease Awareness Month - Guts UK

The path to a correct diagnosis | What's up with my gut?

References

Scottish Government Coeliac Test of Change Reports Gastroenterology | Turas | Learn (nhs.scot) (accessed 26.5.25)

Hoyle A, Gillett P, Gillett HR, et al. No-biopsy strategy is applicable in adult patients: a ‘real world’ Scottish experience. Frontline Gastroenterology 2022 https://fg.bmj.com/content/flgastro/early/2022/08/10/flgastro-2022-102254.full.pdf (accessed 26.5.25)

Sanders D, Penny H, Gillett PM and Gillett HR. BSG Interim Coeliac disease COVID-19 Guidance 2020 https://www.bsg.org.uk/covid-19-advice/covid-19-specific-non-biopsy-protocol-guidance-for-those-with-suspected-coeliac-disease/ (accessed 26.5.25, note this is no longer on the BSG website)

Husby S, et al. ESPGHAN Guidelines for diagnosing coeliac disease 2020. JPGN 2020. European Society Paediatric Gastroenterology, Hepatology and Nutrition Guidelines for Diagnosing Coeliac Disease 2020 - Husby - 2020 - Journal of Pediatric Gastroenterology and Nutrition - Wiley Online Library (accessed 26.5.25)

NICE NG20 Coeliac disease: recognition, assessment and management 2015 Overview | Coeliac disease: recognition, assessment and management | Guidance | NICE (accessed 26.5.25) Resources for Healthcare Professionals | What's up with my gut? (accessed 26.5.25) 66857b22d9e15b010f22d31c_Adult gut problems diagnostic pathway.pdf (accessed 26.5.25)

Ludvigsson JF, Bai JC, Biagi F, et al. Diagnosis and management of adult coeliac disease: guidelines from the British Society of gastroenterology. Gut 2014;63:1210–28