International Coeliac Day 16 May 2014
Improving diagnosis of coeliac disease
As part of this year’s International Coeliac Day, AOECS is raising awareness for an improvement in diagnosis rates of coeliac disease.
Recent statistics show that in Europe only approximately 12%-15% of those suffering from coeliac disease obtain a diagnosis. 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 it is 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.
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.
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|
|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|
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 www.espghan.pt.
Coeliac Disease online learning module
If you would like to test and expand your knowledge on coeliac disease and its diagnosis why not take a look at the below online learning module.
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. For more information on ‘hidden gluten’ please go to (insert link). 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
Help spread the word
If you need more information or would like to get involved in helping to raise awareness of coeliac disease and its diagnosis, please contact us or your national coeliac society. A list of our Member societies can be found at our Members page.