Yvonne Jeanes is an academic dietitian, her research focus is on coeliac disease and the practicalities of living gluten free. She is on Twitter: @DrYJeanes.
Nick Trott is a gastroenterology dietitian who helps manage the dietetic-led coeliac clinic at the Royal Hallamshire Hospital in Sheffield. His research and clinical interests include disorders of gut brain interaction, IBD, and gluten-related disorders. He is on Twitter: @trott_nick.
Cristian Costas Batlle is a gastroenterology dietitian running the dietetic-led coeliac service at Bradford Teaching Hospitals NHS Foundation Trust and his clinical interests mainly include coeliac disease, IBS, and IBD. He is on Twitter: @cristiancostasb.
‘This article highlights how dietitians with expertise of coeliac disease are a key part of coeliac disease management’ – Dr Kevin Barrett, Chair of the Primary Care Society for Gastroenterology
In response to COVID-19 the British Society of Gastroenterology (BSG) have released interim guidelines1 supporting the non-biopsy diagnosis of coeliac disease — under specific conditions.
These guidelines will streamline the diagnosis of coeliac disease for many patients and negate the need to undertake an invasive duodenal biopsy. However, with the inevitable move from secondary to primary care diagnosis of coeliac disease, it is important that patients with coeliac disease continue to receive appropriate support and management.
Coeliac disease is a chronic immune-mediated enteropathy triggered by gluten ingestion in genetically susceptible individuals. Coeliac disease increases the prevalence of vitamin and mineral deficiencies, osteoporosis, other autoimmune disorders, and gastrointestinal malignancies.
Historically, diagnosis has been achieved through a case finding approach. Where there is clinical suspicion, screening serology (endomysial and tissue transglutaminase antibodies) is undertaken and diagnosis is confirmed via duodenal biopsy in secondary care.2
… the incidence rate of coeliac disease in the UK has increased four-fold between 1990 and 2011 … 75% of sufferers remain undiagnosed.
There has been a four-fold increase in the incidence rate in the UK between 1990 and 2011 (from 5.2 to 19.1 per 100 000 person years). However, 75% of sufferers remain undiagnosed.3
The cornerstone of treatment for coeliac disease is a gluten-free (GF) diet. National Institute for Health and Care Excellence (NICE) guidelines on the management of the condition highlight that dietitians are pivotal in improving patient knowledge and supporting behaviour change required to successfully adhere to the GF diet.4
Adherence to a GF diet is widely recognised to be challenging; even a small quantity of gluten inadvertently ingested can cause symptoms and inflammation.
NICE quality standard states ‘Healthcare professionals (such as consultants or GPs) [should] ensure that people newly diagnosed with coeliac disease discuss how to follow a gluten free diet with a healthcare professional with specialist knowledge of coeliac disease, such as a dietitian’, and this is the treatment modality preferred by patients.4
Dietitians play an important role in coeliac disease management; they explain the diagnosis in detail and work with patients to educate them and reduce the psychological burden of living GF. Dietitians also navigate the numerous practicalities associated with dietary adherence.
Dietitians will often address the following within their consultations:
• rationale for GF diet and what constitutes a nutritionally adequate GF diet;
• practicalities of living GF, inclusive of food shopping, label reading, eating away from home, and consideration of cross contamination risk;
• readiness/acceptance of diagnosis, family support, and any barriers to adhering to the GF diet, such as financial constraints; and
• consideration of other comorbidities (such as, diabetes, obesity, IBS, and/or disordered eating).
Initial contact with a dietitian after diagnosis is either a one-to-one consultation or in a group session with a follow-up one-to-one, either in person or via a virtual clinic.
Group sessions have shown comparable outcomes to one-to-one consultations, with the additional benefit of peer support5 and of relevance to current times telephone clinics have also been shown to improve GF dietary adherence.6
Dietitians are experts who enable patients to adhere to a GF diet and sustain nutritional adequacy …
During follow-up appointments, through a detailed assessment, dietitians can detect inadvertent gluten ingestion, enabling patients to adhere to the, often challenging, lifelong GF diet.
Over the past year we have entered a period of rapid change in how health care is delivered. The diagnostic pathway for coeliac disease is moving towards primary care, with benefits to patients and the health service.
The challenge now is to ensure a similar pace of change in the management of coeliac disease, enabling patients to have access to dietitians to optimise their treatment; the GF diet. Dietitians are experts who enable patients to adhere to a GF diet and sustain nutritional adequacy while at the same time reducing dietary burden.
Below is a selection of free and paid resources we recommend patients are signposted to before their dietetic appointment. It is important to remember they are generic and cannot replace dietetic education and support where nutritional information on the GF diet is individualised to patients’ specific needs.
Free resources:
The Coeliac UK website: the ‘New digital resource to support you after diagnosis’ section includes videos featuring a dietitian explaining the diagnosis and how to follow the GF diet. There are also many other useful free resources on the Coeliac UK Website.
The Patient Webinars website: the ‘Overview: coeliac disease’ section includes content created by dietitians with webinars, handouts, and frequently asked questions and answers to help people with coeliac disease.
Paid resources:
Coeliac UK Gluten Free Food Checker is an app that can help to identify gluten by scanning barcodes in supermarkets. It also has readily available online lists so people can search GF suitable foods on their phone without leaving the house.
Coeliac UK Gluten Free On The Move is an app that can help find accredited venues that offer GF food options all around the UK.
To access any of these apps patients will have to pay for a Coeliac UK membership. Currently a digital membership costs £1.25 per month and a full membership costs £2.25 per month (exemptions and discounts are also available). More information is available at: https://www.coeliac.org.uk/home.
This article is endorsed by the British Dietetic Association Gastroenterology Specialist Group.
References
1. Penny HA, Sanders DS, Gillett H, et al. BSG Interim Guidance: COVID-19 specific non-biopsy protocol for those with suspected coeliac disease. 2020. https://www.bsg.org.uk/covid-19-advice/covid-19-specific-non-biopsy-protocol-guidance-for-those-with-suspected-coeliac-disease (accessed 17 Feb 2021).
2. 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(8): 1210–1228.
3. West J, Fleming KM, Tata LJ, et al. Incidence and prevalence of celiac disease and dermatitis herpetiformis in the UK over two decades: population-based study. Am J Gastroenterol 2014; 109(5): 757–768.
4. National Institute for Health and Care Excellence. Coeliac disease: recognition, assessment and management. NG20. 2015. https://www.nice.org.uk/guidance/ng20 (accessed 17 Feb 2021).
5. Rej A, Trott N, Kurien M, et al. Is peer support in group clinics as effective as traditional individual appointments? The first study in patients with celiac disease. Clin Transl Gastroenterol 2020; 11(1): e00121.
6. Muhammad H, Reeves S, Ishaq S, Jeanes Y. Interventions to increase adherence to a gluten free diet in patients with coeliac disease: a scoping review. Gastrointest Disord 2020; 2: 318–326.
Featured photo by Wesual Click on Unsplash
