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Recognising coeliac disease in primary care

Lorna Carr
BSc(Hons) RD
Coeliac UK Dietitian

Coeliac disease is not an allergy or simple food intolerance; it is genetic and life-long, although it may be diagnosed at any age. The nurse is in a prime position to help support people through the diagnosis and treatment of coeliac disease, as Lorna Carr explains

Coeliac disease is an autoimmune condition triggered by eating gluten, a protein from the cereals wheat, rye and barley. Some people may also be sensitive to oats.

The condition has a prevalence of one in 100; however, only 10-15% of sufferers are currently diagnosed in the UK. In 2006, a study of Coeliac UK members found that it can take an average of 13 years for individuals to get a definitive diagnosis from the time of the first GP consultation about their symptoms.1

Dr Chris Steele, MBE and resident doctor on ITV's This Morning, has been Ambassador of Coeliac UK for the past three years. Ironically, in January 2010, Dr Steele announced live on the programme that he had been tested and subsequently diagnosed with coeliac disease. He says: "I have supported the need to raise awareness of diagnosing coeliac disease for many years but never thought that I would be diagnosed myself! It is a condition often overlooked and misdiagnosed by GPs, which has resulted in half a million people in the UK currently undiagnosed. Consequently, people are suffering unnecessarily for many years, which can also lead to an increased risk of osteoporosis and small bowel cancer."

Awareness of coeliac disease
The National Institute for Health and Clinical Excellence (NICE) provides guidance on recognition and awareness of coeliac disease for healthcare professionals. It outlines the appropriate blood tests and the exact process to be completed to identify those people who are at risk of coeliac disease. You can access further information on the NICE guidance on their website (see Resources at the end of this article).

Symptoms of coeliac disease range from mild to severe and can vary between individuals. Symptoms can include:

  • Bloating.
  • Nausea.
  • Constipation.
  • Diarrhoea.
  • Wind.
  • Tiredness.
  • Anaemia.
  • Headaches.
  • Mouth ulcers.
  • Weight loss.
  • Dermatitis herpetiformis (a skin manifestation of coeliac disease).
  • Depression.
  • Joint or bone pain.

Some of the symptoms can be mistaken for irritable bowel syndrome (IBS) or wheat intolerance.2 Although weight loss can be a symptom, people can be a normal weight, or even overweight, at diagnosis.3

Coeliac disease is diagnosed with an IgA (immunoglobulin A) antibody blood test, followed by endoscopy with duodenal biopsy.

Blood tests
There are two antibody blood tests specific to coeliac disease. The first choice test measures tissue transglutaminase antibodies (tTGA). This test is highly sensitive and specific to coeliac disease.4 If the results of this test are uncertain there is another test that measures endomysial antibodies (EMA). It is essential that anyone who is going through the diagnostic process continues to eat a normal diet that contains gluten to make the tests accurate.

Intestinal biopsy
Individuals with a positive antibody blood test should be referred to a gastroenterologist for duodenal biopsy to confirm a diagnosis of coeliac disease. The biopsy looks for typical inflammation of the lining of the small intestine. It is important to continue having a normal diet that contains gluten before considering diagnostic tests for coeliac disease. The NICE guideline recommends that if the diet has been changed, more than one meal that contains gluten should be eaten every day for at least six weeks before testing.

Associated conditions
There are serious complications associated with untreated coeliac disease, including infertility, osteoporosis and rare gut lymphomas.4

Research suggests that around half of adults with coeliac disease are likely to have low bone mineral density at diagnosis.5 This is largely thought to be related to long-term malabsorption of calcium due to delayed diagnosis. If people are diagnosed with coeliac disease in their childhood or teens and follow a gluten-free diet, their long-term bone status is likely to be unaffected as calcium absorption and bone-density both normalise.6

Management of coeliac disease
Coeliac disease is managed by a strict gluten-free diet. This is a major undertaking and can impose considerable constraint on food choice and variety. Supporting people diagnosed with coeliac disease to follow the gluten-free diet is important in the management of symptoms and reducing the risk of associated complications.

The gluten-free diet
Gluten is a protein found in wheat, rye and barley. The most obvious sources of gluten in the diet are bread, pasta, flour, pizza bases, cakes and biscuits. Gluten can also be found in foods such as soups, sauces, ready meals and processed foods such as sausages.

The gluten-free diet is made up of:

  • Naturally gluten-free foods such as meat, fish, fruit and vegetables, rice, potatoes and lentils.
  • Processed foods made without ingredients containing gluten, such as ready meals and soups.
  • Specialist substitute foods such as gluten-free bread, flour, pasta, crackers and biscuits. These are available on prescription and in supermarkets.

The role of oats in the gluten-free diet has been debated for many years. Systematic reviews looking at the safety of oats have been published.7 Most people with coeliac disease can eat uncontaminated oats as part of a gluten-free diet. However, a small number of people with coeliac disease cannot tolerate the gluten-like proteins called avenins in oats.8
The main problem with oats and oat products is that most are contaminated with wheat, rye or barley during processing, such as harvesting or milling, making them unsuitable for a gluten-free diet.9

Uncontaminated oats are a good source of soluble fibre. Fibre helps to maintain a healthy gut, can help to treat raised cholesterol and also contributes to keeping blood sugars stable in those with diabetes. Coeliac UK lists oat products that are free from contamination in the Food and Drink Directory, which is published annually and updated each month.

People with coeliac disease need to avoid contamination of gluten-free foods. Even tiny amounts of gluten may cause symptoms in the short term and gut damage in the longer term. Advice should be given to help reduce the risk of contamination in the home. Information on contamination can be found on the Coeliac UK website ( or by asking a local registered dietitian.

Surveys of Coeliac UK members show that 90% of people with coeliac disease obtain gluten-free food on prescription. Gluten-free foods on prescription are important in helping people diagnosed with coeliac disease follow the gluten-free diet.

Prescription guidelines produced by a working group in 2004 provide a minimum monthly amount of gluten-free food, calculated in units, based on requirements of different ages and gender. You can access the guidelines on the Coeliac UK website (

Coeliac disease requires ongoing review and management to evaluate adherence to the diet and monitor for symptom improvement and any associated conditions or complications.
The British Society of Gastroenterology recommends that people with coeliac disease are followed up on an annual basis.10,11 Tests at follow-up may include assessment of symptoms, nutritional status and routine blood tests including thyroid function tests, haemoglobin and liver function tests. Coeliac disease antibody blood tests can also help to monitor dietary adherence. Children should also have growth and development monitored. Follow-up may be managed in primary or secondary care.

All members of the healthcare team are important in the diagnosis and review of the gluten-free diet and in providing follow-up and support.

Support for patients and healthcare professionals
Coeliac UK provides information and support for people diagnosed with coeliac disease and the healthcare professionals involved in their management. If you are a nurse who would like to become a member of Coeliac UK you can join for free via the website (see Resources).

Coeliac UK produces a range of information on coeliac disease and the gluten-free diet including:

  • A copy of their Welcome Pack outlining everything your patient needs to know about the gluten-free diet.
  • A Food and Drink Directory listing suitable food products and information on food labelling.
  • An A-Z list of suitable grains.
  • Information on eating out and travel.
  • Information on prescription entitlements and gluten-free products available on prescription.
  • A range of leaflets including information on associated conditions such as osteoporosis and dermatitis herpetiformis, as well as advice on pregnancy and weaning.

For further information, visit the website or contact the Helpline (see Resources at the end of this article).

Greater recognition of coeliac disease will result in improved quality of life for those affected.12 It is likely that, as a result of the NICE guideline, the number of people diagnosed with coeliac disease will increase. This provides a key opportunity for the development of care pathways and services for the diagnosis and management of people with the condition.

1. University of Oxford. Diagnosing Coeliac disease. A survey of Coeliac UK members. BMC Health Services Research; in press.
2. Sanders DS et al. Association of adult CD with IBS of case control study in patients fulfilling ROME II criteria referred to secondary care. Lancet 2001;358:1504-08.
3. Dickey W, Kearney N. Overweight in CD prevalence clinical characteristics and effect of a gluten free diet. Am J Gastroenterol 2006;101(10):2356-9.
4. National Institute for Health and Clinical Excellence (NICE). Recognition and assessment of coeliac disease. London: NICE; 2009. Available from:
5. Bianchi ML, Bardella MT. Bone and Celiac disease. Calcif Tissue Int 2002;71:465-71.
6. Mora S, Barera G, Ricotti A et al. Effect of gluten-free diet on bone mineral content in growing patients with coeliac disease. Am J Clin Nutr 1993;57(2):224-8.
7. Haboubi NY, Taylor S, Jones S. Coeliac disease and oats: a systematic review. Postgrad Med J 2006;82:672-8.
8. Lundin KE, Nilsen EM, Scott HG. Oats induced villous atrophy in coeliac disease. Gut 2003;52:1649-52.
9. Thompson T. Contaminated oats and other gluten-free foods in the United States. J Am Diet Assoc 2005;105:348.
10. British Society of Gastroenterology (BSG). Guidelines for the management of patients with coeliac disease. London: BSG; 2010.
11. Primary Care Society of Gastroenterology (PCSG). The management of adults with coeliac disease in primary care. PCSG; 2006.
12. James S. A NICE approach to Coeliac disease: implications for gastroenterology. Gastrointestinal Nursing 2009;7(8):12-18.

NICE guidelines on coeliac disease

Coeliac UK
Helpline: 0845 305 2060
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