Clinical update

Coeliac disease

Read our guide on new National Institute for Health and Care Excellence (NICE) standards to improve the diagnosis and care of people with coeliac disease.
coeliac

Read our guide on new National Institute for Health and Care Excellence (NICE) standards to improve the diagnosis and care of people with coeliac disease

Essential facts Coeliac disease is a lifelong autoimmune condition where the body reacts to eating gluten, a protein found in wheat, rye and barley. This leads to chronic inflammation of the small intestine and can result in malabsorption of nutrients.

Whats new In October, the National Institute for Health and Clinical Excellence (NICE) published its first quality standards to improve the diagnosis and care of those with coeliac disease, with five statements encompassing recognition, assessment and management. NICE says that those with an increased risk, such as having family members with coeliac disease or exhibiting symptoms, should

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Read our guide on new National Institute for Health and Care Excellence (NICE) standards to improve the diagnosis and care of people with coeliac disease


Coeliac disease is caused by a reaction to gluten and leads to chronic
inflammation of the small intestine. Picture: Alamy

Essential facts
Coeliac disease is a lifelong autoimmune condition where the body reacts to eating gluten, a protein found in wheat, rye and barley. This leads to chronic inflammation of the small intestine and can result in malabsorption of nutrients. 

What’s new 
In October, the National Institute for Health and Clinical Excellence (NICE) published its first quality standards to improve the diagnosis and care of those with coeliac disease, with five statements encompassing recognition, assessment and management. NICE says that those with an increased risk, such as having family members with coeliac disease or exhibiting symptoms, should be offered a serological test. Those newly-diagnosed should be supported to follow a gluten-free diet by a healthcare professional with specialist knowledge of coeliac disease, with every patient offered an annual review. 
 
Signs and symptoms 
Symptoms vary from person to person, ranging from mild to severe and can be consistent or intermittent. Mild cases may not cause any noticeable symptoms and the condition is often detected only during other tests. Symptoms may include severe or occasional diarrhoea, excessive wind or constipation, nausea and vomiting, recurrent stomach pain, cramps or bloating, iron, vitamin B12 or folic acid deficiency, anaemia and mouth ulcers. Around 1 in 5 people with coeliac disease will also develop dermatitis herpetitformis – an itchy rash with blisters that burst when scratched. 

Causes and risk factors 
According to the charity Coeliac UK, the average time to diagnosis is 13 years, with 1 in 4 people previously diagnosed with irritable bowel syndrome. The charity estimates that nearly half a million people have the disease but don’t yet know it. Delays in diagnosis are a concern because of the risk of possible long-term complications, including osteoporosis, lymphoma and small bowel cancer. It may also be an underlying cause in unexplained infertility.  People with type 1 diabetes are at higher risk of having coeliac disease at 4-9%, compared to 1% of the general population. For those whose parents or siblings have coeliac disease, the risk rises to 1 in 10. 

How you can help your patient
The main treatment for coeliac disease is a lifelong gluten-free diet, with most people reporting rapid improvement once this begins. Nursing staff play a key role in educating patients about food, providing advice on alternatives to help maintain a healthy and varied diet. This can reduce the likelihood of patients lapsing. For those yet to be diagnosed, nurses can help to spot the signs, particularly a history of gastrointestinal symptoms, ensuring patients at risk are screened.   

Expert comment 
Helen Griffiths, nurse consultant for gastroenterology, Wye Valley NHS Trust

‘The important thing is that NICE is saying these are quality standards now, giving something to measure your service against and offering more rigour. Most patients with coeliac disease will present in primary care, with symptoms such as anaemia or abdominal pain. These standards will come into their own here, encouraging practices to test, in the knowledge that coeliac disease affects 1 in 100 people. 

‘The annual review is also important. This is variable at the moment. At our trust we have a nurse-led clinic and follow-up all our coeliac patients, either face-to-face or by telephone. But a lot of trusts don’t, expecting GPs to do it, and it doesn’t always happen. Nurses play a crucial role in helping patients to self-manage, offering understanding and different approaches and strategies to try, especially for those struggling to follow the diet.’    


RCNi articles

Diagnosis and nursing management of coeliac disease in children (February 2016)  

Coeliac disease in children (August 2015)

Gluten-related disorders: symptoms, diagnosis and management (May 2016)

Find out more

NICE Coeliac disease quality standards (October 2016)

NICE Coeliac disease: recognition, assessment and management (September 2015)

Coeliac UK

British Society of Gastroenterology

 

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