Patients with coeliac disease need to adhere to a gluten-free diet, including when they are in hospital. This means staff in catering departments and on wards need to be aware of the condition and its consequences
Coeliac disease is a relatively common autoimmune disease that is managed through a strict lifelong gluten-free diet to avoid symptom reoccurrence and long-term complications. When people are admitted to hospital, they temporarily lose control of the planning and preparation of meals – and sometimes even of eating and drinking. Both catering and ward-based staff need to be aware of coeliac disease and its potential consequences. This article explains what hospital staff need to know to care safely for patients who have coeliac disease, including how to prevent the inadvertent introduction of gluten into patients’ diet.
Citation: Best C et al (2018) Managing patients with coeliac disease during a hospital stay. Nursing Times [online]; 114: 7, 18-20.
Authors: Carolyn Best is nutrition nurse specialist; Katie Powell is specialist gastroenterology dietitian; Christine Whitehead is coeliac sister; Effrosyni Kyriazidou is a dietetic assistant; all at Royal Hampshire County Hospital, Winchester.
- This article has been double-blind peer reviewed
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Despite the sudden popularity of gluten-free foods, coeliac disease is not a health fad – it is a condition that reduces quality of life and can have negative long-term health consequences. A gluten-free diet is the only treatment and must be strictly adhered to, even when people are not in a position to control what they eat or drink – for example, during a hospital stay.
Coeliac disease – one of the most common autoimmune conditions that is diagnosed in the UK – is thought to affect 1% of the population (Mooney et al, 2014). The ingestion of gluten causes a flattening of the villi (small, finger-like projections that line the walls of the small intestine and extend into its lumen). This reduces the surface area of the intestinal walls through which nutrients can be absorbed.
The malabsorption of nutrients seen in coeliac disease can generate a range of symptoms such as:
- Abdominal pain;
- Nausea and vomiting;
- Steatorrhoea (abnormal levels of fat in the faeces);
- Weight loss;
- Failure to thrive (Ludvigsson et al, 2014).
Some people display no obvious symptoms and may present with:
- Ongoing headaches;
- Iron-deficiency anaemia.
Coeliac disease can also have a psychological impact and people with it may:
- Experience short temper;
- Experience low mood;
- Feel less able to cope with life.
These psychological manifestations are often missed as symptoms of coeliac disease (Jacobsson et al, 2017).
Card et al (2013) found that it was not uncommon for people presenting with symptoms of coeliac disease to either go undiagnosed for some time or to be misdiagnosed as having, for example, irritable bowel syndrome.
Diagnosing coeliac disease involves taking a biopsy of duodenal tissue while the person is still eating a gluten-containing diet. If that biopsy shows an atrophy of the villi, a diagnosis of coeliac disease can be made (Ludvigsson et al, 2014). Exceptions are patients with coagulation disorders and pregnant women, in whom biopsy may not be feasible or should be postponed until postpartum (Ludvigsson et al, 2014).
Duodenal biopsy is often accompanied by a series of blood tests – outlined in Box 1 – to support diagnosis, but a diagnosis of coeliac disease cannot be established by blood tests alone (Ludvigsson et al, 2014). These blood tests are also useful at a later stage to monitor patients’ adherence to a gluten-free diet.
Once a diagnosis of coeliac disease has been made, a gluten-free diet should be introduced immediately.
Box 1. Blood tests for coeliac disease
- IgA and IgA tTG
- IgA EMAs (if IgA tTG is weakly positive)
- IgG EMAs, IgG DGP or IgG tTG (if IgA is deficient)
DGP = deamidated gliadin peptide; EMA = endomysial antibody; IgA = immunoglobulin A; IgG = immunoglobulin G; tTG = tissue transglutaminase
Source: National Institute for Health and Care Excellence (2015)
In most patients, the only way to treat coeliac disease is through a lifelong, strict gluten-free diet (Mooney et al, 2014). This involves removing from the diet any food or drinks containing wheat, barley or rye. Table 1 lists common foods and drinks that do, or may, contain gluten.
Once patients are on a gluten-free diet, their symptoms should gradually subside. The length of time this will take will depend on the severity of their symptoms and level of adherence to the diet. In some patients it may take up to a year after diagnosis before they see a significant improvement in their symptoms and serological markers (Ludvigsson et al, 2014). Negative serological markers and/or the absence of symptoms are not, on their own, sufficient evidence that there is a positive mucosal response to a gluten-free diet. An annual assessment should be offered and include:
- Review of weight and height;
- New ongoing symptoms;
- Discussion of patient’s dietary intake (National Institute for Health and Care Excellence [NICE], 2015).
To help live with the disease and adhere to their diet, patients should be reviewed once a year by a registered dietitian or specialist coeliac/gastrointestinal nurse. In these reviews, the health professional will offer:
- Advice on a gluten-free diet;
- Help with ongoing and/or new symptoms;
- Information on how to avoid cross-contamination, how to read food labels and where to seek further help.
Health fad versus serious condition
The media-driven popularity of following gluten-free diets to lose weight or reduce abdominal bloating may encourage the perception that they are a dietary craze. It must be stressed that coeliac disease is not a health fad and adopting a gluten-free diet because of coeliac disease is not a lifestyle choice.
Coeliac disease is a potentially life-changing condition. Patients experience an autonomic response every time they are exposed to gluten, which may manifest with acute symptoms of diarrhoea, bloating and vomiting. Failure to adhere to a strict gluten-free diet exposes the person to potential long-term complications including lymphomas (Smedby et al, 2005), small bowel adenocarcinoma (Howdle et al, 2003) and osteoporosis (Lucendo and García-Manzanares, 2013).
Provided they receive the right diagnosis, advice and support, most patients will be able to safely manage their condition and live a full and healthy life. However, if for any reason they are admitted to hospital, they hand over responsibility for planning and preparing their meals to hospital staff.
In hospital, staff involved in ordering, preparing and helping with meals include nurses, support workers, nutrition and hydration professionals, housekeepers, domestic staff and volunteers. They all need to be informed and educated about the specific dietary needs of patients with coeliac disease.
Knowledge of hospital staff
There is little literature on the level of knowledge of hospital staff on what to do when a patient with coeliac disease is admitted to their clinical area. Coeliac disease is not commonly discussed during mandatory training or at induction of secondary healthcare staff. NICE (2015) states that appropriate chronic disease management for patients with coeliac disease is a clinical priority for primary care professionals such as community nurses, but the same does not apply to nursing staff caring for patients admitted to hospital.
The inadvertent introduction, by hospital staff, of gluten in the meals or drinks of patients with coeliac disease can have a significant negative impact on patients’ health while in hospital and for some time afterwards. Staff must be fully aware of the precautions they need to take to avoid this.
Educating catering staff
To ensure foods and drinks do not become contaminated during preparation, it is vital to increase awareness among catering staff and train them appropriately. This can be done, for example, through group training sessions, led by a gastroenterology dietitian, that focus on:
- How accidental gluten exposure affects patients with coeliac disease;
- Cross-contamination with foods prepared with gluten-containing ingredients;
- Gluten-free food labelling.
Gluten is one of 14 allergens that feature on a list established by EU regulations in 2011 and amended in 2014. These 14 allergens must be labelled or indicated as being present in foods (Bit.ly/FSAAllergenRules). All staff involved in the production, distribution and/or delivery of meals to the public need to be aware of these allergens and know how to access information about them. That information should be readily accessible for staff working in hospital catering departments.
Educating ward staff
Ward-based staff (nurses, support workers) and student nurses also need to be made aware of, and educated about, coeliac disease. Training should make clear the need to order a gluten-free diet for the entire hospital stay for patients with coeliac disease. Staff need to be aware of the EU legislation on allergens and know where to access information on which foods may contain allergens.
Managing coeliac disease in patients presenting with acute confusion as a result of infection, or longer-term issues such as dementia, is a challenge. Patients may not be aware that they need a gluten-free diet or may have difficulty accepting it. While relatives can be a valuable source of information and support, they cannot be present throughout the person’s stay. Staff responsible for meeting the nutrition and hydration needs of patients must be careful that a gluten-free diet is maintained at all times.
Training at Royal Hampshire County Hospital
Staff are not always able to leave their ward for training. At RHCH, we found that providing teaching to raise awareness of coeliac disease on the ward helped reach larger numbers of staff. We also found that staff benefited from hearing volunteers with coeliac disease talk about their condition.
A member of the coeliac team – armed with hand-outs, quizzes and gluten-free cake – delivers short information sessions to staff on wards on day and night shifts. These ‘trolley dashes’, first introduced in May 2016, provide a training format that is acceptable to staff and achievable for the coeliac team with the help of the local Wessex coeliac group. They have resulted in a noticeable improvement of the know-ledge and confidence of ward staff when caring for patients with coeliac disease and are planned to continue annually.
In most people, coeliac disease is relatively easy to manage as long as they adhere to a strict gluten-free diet. This needs to continue during a hospital stay. Hospital staff who care for inpatients with coeliac disease need to ensure that no gluten is inadvertently introduced into patients’ food and drinks. Box 2 summarises the key actions to take during the hospital stay of a patient with coeliac disease.
Box 2. Key actions when caring for a patient with coeliac disease in hospital
- Know where to access information about allergens in the foods given to the patient
- Clearly document and communicate the need for a gluten-free diet to all staff, particularly if the patient is unable to express their needs themselves
- Inform the catering department of the need for a gluten-free diet, including gluten-free snacks
- If there are concerns regarding the patient’s adherence to a gluten-free diet, involve the ward dietitian
- In coeliac disease, the immune system reacts against the ingestion of gluten
- Coeliac disease increases the riskof lymphomas,small bowel adenocarcinoma and osteoporosis
- The only treatment for coeliac diseaseis a strict lifelong gluten-free diet
- Hospital staff must ensure they avoid giving patients with coeliac disease any food or drinks that contain gluten
- Short training sessions delivered on hospital wards can help raisestaff awareness of coeliac disease
Card TR et al (2013) An excess of prior irritable bowel syndrome diagnoses or treatments in Celiac disease: evidence of diagnostic delay. Scandinavian Journal of Gastroenterology; 48: 7, 801-807.
Coeliac UK (2017) Gluten Free Checklist.
Howdle PD et al (2003) Primary small-bowel malignancy in the UK and its association with coeliac disease. QJM: Monthly Journal of the Association of Physicians; 96: 5, 345-353.
Jacobsson LR et al (2017) Experiences and own management regarding residual symptoms among people with coeliac disease. Applied Nursing Research; 35: 53-58.
Lucendo AJ, García-Manzanares A (2013) Bone mineral density in adult coeliac disease: an updated review. Revista Española de Enfermedades Digestivas; 105: 3, 154-162.
Ludvigsson JF et al (2014) Diagnosis and management of adult coeliac disease: guidelines from the British Society of Gastroenterology. Gut; 63: 8, 1210-1228.
Mooney PD et al (2014) Coeliac disease. British Medical Journal; 348: 1561.
National Institute for Health and Care Excellence (2015) Coeliac Disease: Recognition, Assessment and Management.
Smedby KE et al (2005) Malignant lymphomas in coeliac disease: evidence of increased risks for lymphoma types other than enteropathy-type T cell lymphoma. Gut; 54: 1, 54-59.