Improving Diagnosis of Coeliac Disease

Improving Diagnosis of Coeliac Disease

This year, AOECS is focussing its efforts on raising awareness for an improvement in diagnosis rates of coeliac disease.

In order to increase the percentage of those diagnosed and also reduce the waiting time between first symptoms and diagnosis, it is crucial that doctors and other healthcare professionals are aware of and can recognise the multitude of possible symptoms associated with coeliac disease.





Why not test your knowledge of coeliac disease by trying out our online learning module


Coeliac Disease online learning module



Recent statistics show that in Europe only approximately 12%-15% of those suffering from coeliac disease obtain a diagnosis.    



Improving Diagnosis of Coeliac Disease

In many cases, the time between experiencing first symptoms and diagnosis is in excess of 10 years. Misdiagnosis or, indeed, missing diagnosis causes those with the condition to live a life filled with chronic pain and discomfort. If left untreated, the disease can also lead to a range of subsequent conditions such as infertility, osteoporosis and small bowel cancer. There is no cure for coeliac disease and no medication, the only treatment is a strict gluten-free diet for life.


It is important to make sure family members are aware of the condition as it can run in families. If a first degree relative has coeliac disease then prevalence increases to 1 in 10. Awareness of a medical diagnosis of coeliac disease within a family can help identify the disease if a relative also has or develops symptoms.


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Coeliac disease  



Coeliac Disease

Coeliac disease affects one in 100 genetically predisposed individuals who develop an inflammation of the small intestine after exposure to ingested gluten. Gluten is a protein that is found in various cereals, i.e. wheat, rye barley, triticale and crossbred varieties, and triggers an immune-mediated reaction in those predisposed to the disease. Appromiximately10% of all first degree relatives (i.e. parents, siblings and offspring) of those with coeliac disease are at risk of also developing the condition.


Severity of symptoms differs from person to person and can range from gastrointestinal to extraintestinal manifestations. However, due to similar complications associated with other diseases such as anaemia, early osteoporosis, secondary lactose- intolerance and many more, numerous cases are misdiagnosed.


In asymptomatic cases, a diagnosis is even more difficult to obtain and coeliac disease can remain undiagnosed.



Symptoms related to Coeliac Disease


Diarrhoea Excessive wind or constipation
Nausea Vomiting
Recurrent stomach pain

Deficiency of iron, vitamin B12 or folic acid

Tiredness and/or headaches Sudden or unexpected weight loss
Mouth ulcers Hair loss (alopecia)

Skin rash (dermatitis herpetiformis)

tooth enamel problems
Osteoporosis Joint and/or bone pain

Type 1 Diabetes and other autoimmune diseases

Infertility and/or repeated miscarriages Ataxia
Liver abnormalities Amenorrhoea
Neurological problems Neuropathy







Please note that an accurate diagnosis of coeliac disease requires the ingestion of gluten over a six-week period. It is therefore important that prior to diagnosis, gluten should not be removed from the daily diet.


The three phases in diagnosing coeliac disease:

- symptoms which are consequences of eating

  gluten-containing food

- blood test to check for specific antibodies that

  indicate coeliac disease

- if the blood test is positive an intestinal biopsy

  will be done with an endoscope to check if there

  is intestinal damage typical of coeliac disease.


In most cases children will also need to have an antibody blood test, followed by a biopsy to confirm the diagnosis of coeliac disease. However, children of HLA DQ2/DQ8-type with symptoms and a high level of antibodies may not need to undergo a biopsy to confirm diagnosis. For more information on guidelines around children with coeliac disease, please visit the website of the European Society for Paediatric Gastroenterology (ESPGHAN) website at








Gluten-free food


















The only treatment of coeliac disease is the life-long avoidance of eating gluten. As many ingredients are naturally gluten-free (see the Gluten-Free Food section of our website), following a gluten-free diet may seem simple to follow. However, gluten is widely used in food preparation and can be found ‘hidden’ in a variety of products, i.e. sauces, processed cheeses and sausages.


Another important factor to be aware of is the risk of cross contamination. Even they contain only naturally gluten-free ingredients, commercial foods are often contaminated by being produced and packaged in the same facilities as gluten-containing foods. These food products are not suitable for those suffering from coeliac disease.


In recent years a growing range of gluten-free substitute foods have become available, such as gluten-free bread, flour, pasta, crackers and biscuits. In most European countries these can be found in supermarkets and health food stores. For a list of gluten-free products licensed in our Member countries visit our webpage Gluten-Free Products in Europe.