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Coeliac UK

Coleiac UK Coeliac UK is the leading charity working for people with coeliac disease and Dermatitis Herpetiformis (DH). Thier mission is to improve the lives of people with coeliac disease through support, campaigning and research.

Three new research projects into coeliac disease



Coeliac UK logoCoeliac UK, the national charity for people with coeliac disease, announces it has granted funding for three medical projects totalling £300,000 over three years.

1 in 100 people in the UK has coeliac disease, an autoimmune disease caused by intolerance to gluten but only 1 in 8 or 12.5% of those have been diagnosed. There is no cure and no medication for coeliac disease and the only treatment is a life-long, strict gluten-free diet. Without a gluten-free diet, coeliac disease can lead to infertility, multiple miscarriage, osteoporosis, neurological deficits and bowel cancer.

The Charity is funding three new research projects to aid in the diagnosis of the condition which are:

    • £143,000 into genetic research led by Professor David van Heel of Queen Mary College, London which builds on earlier work to identify the genetic basis of coeliac disease. In his previous work Professor van Heel and his team identified 13 new gene variants which appeared to be associated with coeliac disease, many of which are linked to the way the immune system works. In this latest study, new genetic techniques will be used to identify those genes most likely to cause coeliac disease rather than those simply associated with the condition. 8,000 coeliac patient genetic samples will be analysed and compared with those from 8,000 people without the condition.
    • £143,00 granted to a team led by Professor Daniel Aeschlimann from Cardiff and joined by Dr Marios Hadjivassiliou, Professor David Sanders and Nigel Hoggard from Sheffield, to undertake new research into the neurological manifestations of gluten sensitivity. The research will use new biomarkers (transglutaminase 6 auto antibodies) in the blood to identify those patients presenting with neurological symptoms but lack the classical bowel symptoms more reliably and earlier in the disease process. The work will also establish whether the new test can identify those patients with coeliac disease who present to gastroenterologists that are at risk of developing neurological problems.
      A sensitive brain imaging technique called Magnetic Resonance Spectroscopy will be employed to identify patients who already have brain abnormalities at diagnosis of coeliac disease. Further molecular work endeavours to explain the events leading to the production of this new biomarker and therefore to provide an insight into why symptoms can be vastly different between individual patients.
    • £14,000 to Professor David Sanders and his team at Sheffield’s Royal Hallamshire Hospital to focus on changing the clinical approach of diagnosing coeliac disease in patients who have non specific gut symptoms. They propose taking a simple and quick blood test for coeliac disease in a sample group of patients attending the hospital for an endoscopy appointment but for whom coeliac disease hadn’t currently been suspected. Using the ‘pin prick’ test currently sold in the UK as Biocard, the test will provide instant results. The grant has been match funded by funding from the Biocard company.
Sarah Sleet, Chief Executive of Coeliac UK said: “We currently estimate that there are around half a million people in the UK with undiagnosed coeliac disease and it is essential that research is undertaken to improve diagnosis results. With an average diagnosis period of 13 years, many people have to endure many years of symptoms which may also impact on NHS resources due to repeat visits to the GP and unnecessary courses of action due to misdiagnosis.”

“As a charity committed to research we hope that the findings of these three projects will enable swifter diagnosis and enable more people to benefit from an improved quality of life.”

The symptoms of coeliac disease range from being mild to severe and can vary between individuals. Symptoms include bloating, abdominal pain, nausea, constipation, diarrhoea, wind, tiredness, anaemia, headaches, mouth ulcers, weight loss – but not in all cases, skin problems, joint or bone pain as well as nerve problems (headaches, depression, loss of balance).

FAQs on coeliac disease

Coeliac UK logo

 

Sign up now to the online petition to Downing Street. Launched by the Charity, the petition is to ask the government to improve diagnosis rates of coeliac disease.

How many people in the UK have coeliac disease?

Screening studies suggest that 1 in 100 people have coeliac disease; however, there is evidence to suggest that only 1 in 8 cases have been diagnosed. Therefore under-diagnosis of coeliac disease is a significant problem. 

What exactly is coeliac disease?

Coeliac disease is a life-long autoimmune disease, which is triggered by eating gluten, a type of protein found in wheat, rye and barley. Some people are also sensitive to oats. For people with coeliac disease, eating gluten damages the lining of the gut, which prevents normal digestion and absorption of food. There are serious health problems associated with coeliac disease including osteoporosis, bowel cancer and increased risk of other autoimmune diseases.

Is it a genetic condition?

Coeliac disease is not contagious. Coeliac disease does run in families, but not in a predictable way. Studies show that if a family member has the condition, there is a 1 in 10 chance of a close relative developing the disease. Anyone who has a relative with coeliac disease should be aware of the symptoms, and should discuss with their doctor about getting tested if they think they may have it. People with coeliac disease are born with genes that predispose them to develop the condition, but the symptoms can be triggered at any age. A stressful event such as pregnancy, childbirth or a bout of gastroenteritis can trigger coeliac disease in predisposed people. The majority of people are diagnosed between 40 – 50 years of age.

What are the symptoms, what should we be looking out for?

The symptoms of coeliac disease range from mild to severe, can vary between individuals and can present at any stage in life. Not everyone with coeliac disease experiences gut related symptoms. Symptoms can include bloating, abdominal pain, nausea, constipation, chronic or intermittent diarrhoea, wind, tiredness, anaemia, headaches, mouth ulcers, recurrent miscarriages, unexplained weight loss (but not in all cases), failure to thrive/faltering growth (in children), skin problems, depression, joint or bone pain and neurological (nerve related) problems. Dermatitis Herpetiformis (DH) is a characteristic skin condition which is a presentation of coeliac disease. People with DH react to gluten by developing itchy, red raised patches, often with blisters that burst with scratching. Elbows, knees and buttocks are most commonly affected, but any area of skin can be affected. Even though they may not have gut related symptoms, most people with DH have the same kind of gut damage as seen in typical coeliac disease.

What should people do if they suspect they might have coeliac disease?

The first step is for them to discuss their symptoms with their GP who can take a simple blood test to check for antibodies. Antibodies are produced by the body in response to eating gluten. It is therefore essential to continue to eat a normal gluten containing diet prior to getting tested. NICE recommend having gluten in at least one meal everyday for at least six weeks prior to the test. The next step is for the GP to refer to a hospital specialist (gastroenterologist) for a gut biopsy. This is a simple procedure performed in out-patients which looks for damage in the gut that is typical in coeliac disease. The test involves passing a thin flexible tube (an endoscope) through the mouth and down to the upper part of the small intestine where a tiny sample of gut lining is collected. This can be done using local anaesthetic on the throat and/or sedation. Although the procedure may not be particularly comfortable, neither passing the tube nor taking biopsies should be painful.

 

GLUTEN SHOULD NEVER BE TAKEN OUT OF THE DIET UNTIL THE BLOOD TEST AND GUT BIOPSY ARE COMPLETE BECAUSE THIS IS LIKELY TO CAUSE A FALSE NEGATIVE TEST.

How is coeliac disease treated?

A life-long gluten-free diet is the treatment for coeliac disease. When you are diagnosed, your doctor should refer you to a dietitian who will help guide you through the initial steps of changing your diet. It may take a while to get your diet sorted out but with perseverance you will get there. By switching to a gluten-free diet, the gut damage caused by eating gluten will start to heal. The amount of time the gut takes to heal varies between people; and commonly takes between 6 months and up to 2 years. However, you should start to feel better in the first few weeks. The health risks associated with coeliac disease are minimised as long as you stick to a gluten-free diet.

What is the difference between an allergy and intolerance?

It is important to distinguish between food allergy and food intolerance as these two terms can sometimes be confused. Food allergies are generated by the immune system and usually occur within seconds or minutes of eating the food in question. Tiny amounts can cause potentially life-threatening allergic reactions, which is why it is vital to know about the ingredients and preparation of foodstuffs. Food intolerance is not triggered by the immune system and is generally non life-threatening. It may affect the digestion and common symptoms include digestive discomfort, diarrhoea and bloating. Coeliac disease is not an allergy or simple food intolerance. It is an autoimmune disease which is triggered by eating gluten from the cereals wheat, rye and barley. Some people with coeliac disease are also sensitive to oats. Coeliac disease requires on-going review and management. There are serious problems associated with coeliac disease including osteoporosis, bowel cancer and increased risk of other autoimmune diseases.

What kinds of foods have gluten in them?

Many everyday foods such as breads, pasta, flours and cereals contain gluten. However, there are plenty of foods you can continue to eat when you have coeliac disease. Plain meat, fish, eggs, cheese, milk, yoghurts, fruits, vegetables, pulses (peas, beans and lentils), rice, maize (corn) and potatoes are gluten-free. Coeliac UK produces an annual Food and Drink Directory which lists thousands of foods from tins of soup to ready meals that can be safely eaten. By using your Food and Drink Directory, you should be able to build up a knowledge of which foods contain gluten, and those which are safe to eat. Suitable ‘free-from’ products are also available from supermarkets, the internet and mail order companies. 

Can anyone get hold of the Food and Drink Directory?

If you are diagnosed with coeliac disease, you can join Coeliac UK. As a Member, you receive a copy of the Food and Drink Directory, our Crossed Grain magazine and many more services. Currently, we have around 1000 new Members joining us each month. Membership is open to those who have been medically diagnosed with coeliac disease or DH. People who do not have a medical diagnosis can buy our information and resources. The Food and Drink Directory can also be bought separately for £10 (including postage and packing) from Coeliac UK. The telephone number to ring for a Membership form is 01494 437278, or alternatively go to our website www.coeliac.org.uk

This Mornings Dr Chris Steele Diagnosed With Coeliac Disease



Coeliac UK logoDr Chris Steele MBE announced on 18th January 2010, on ITV’s This Morning where he is the show’s resident doctor, that he has been diagnosed with coeliac disease.

Dr Chris   Steele MBECoeliac disease is an autoimmune disease caused by intolerance to gluten. Damage is caused to the gut lining when gluten is eaten. There is no cure or medication for the condition and the only treatment is life-long adherence to a strict gluten-free diet. Without a gluten-free diet, the disease can lead to other conditions, such as malnutrition, osteoporosis, infertility, multiple miscarriages and can cause bowel cancer.

Ironically, Dr Chris has been an Ambassador of Coeliac UK, the national charity for people with coeliac disease for the past three years. However, over the past few months he has been suffering with abdominal symptoms and his own GP referred him to a gastroenterologist.

Following blood tests and then a biopsy the results came back to confirm he does have coeliac disease – at the age of 64.

“I was very honoured to be asked a few years back to be Ambassador of Coeliac UK as I wanted to give as much support as I could to help raise the awareness of the condition in the media and to the general public,” Dr Chris explained.

“However, I never dreamt that I myself would then be diagnosed! I think I have been having symptoms of diarrhoea, abdominal pain and fatigue on and off for many years but it wasn’t until they got so bad recently that I did anything about it and I will be encouraging everyone with similar symptoms to see their GP and be tested rather than suffering in silence,” he said.

At least 1 in 100 people in the UK has coeliac disease. However only 12.5% of those have currently been diagnosed and Coeliac UK estimates that there are over half a million people undiagnosed in the UK.

The symptoms of coeliac disease range from being mild to severe and can vary between individuals. Symptoms include bloating, abdominal pain, nausea, constipation, diarrhoea, wind, tiredness, anaemia, headaches, mouth ulcers, weight loss – but not in all cases, skin

problems, depression, joint or bone pain and nerve problems.

Key facts on coeliac disease


Coeliac UK logo

Key facts on coeliac disease

• Coeliac disease is not a food allergy but an autoimmune disease caused by intolerance to gluten.
• Gluten is a protein found in wheat, rye and barley. Some people are also sensitive to oats.
• Damage to the gut lining occurs when gluten is eaten.
• At least 1 in 100 people are estimated to suffer from coeliac disease in the UK and also 1 in 100 in Europe; however, there is some evidence to support that only 1 in 8 cases are diagnosed.
• The average length of time taken for someone to be diagnosed with the disease from the onset of symptoms is an appalling 13 years!

• Gluten is a protein found in wheat, rye and barley. Some people are also sensitive to oats.
• Obvious sources of gluten include breads, pasta, flours, cereals, cakes and biscuits. It is often used as an ingredient in many favourite foods such as fish fingers, sausages, gravies, sauces and soy sauce.
• There is no cure for the condition; the only treatment is life-long adherence to a strict gluten-free diet.
• If a gluten-free diet is not followed, the disease can ultimately lead to malnutrition, osteoporosis, bowel cancer and also cause infertility problems.
• If someone with coeliac disease accidentally eats gluten, they are likely to be unwell within a few hours; symptoms can include severe diarrhoea and vomiting and can last several days.

• Gluten-free food can be contaminated by crumbs in toasters, jam, butter, on knives, breadboards and other utensils.
• Cereal-fed animals are gluten-free so people with coeliac disease can eat them.
• Coeliac disease runs in families; studies show that if a family member has the condition, there is a 1 in 10 chance of a close relative developing the disease.
• People who think they have Irritable Bowel Syndrome (IBS) may actually have undiagnosed coeliac disease.
• People with coeliac disease cannot join the armed forces.
• People medically diagnosed with coeliac disease and Dermatitis Herpetiformis (DH) can get gluten-free staple food on prescription.
• Dermatitis Herpetiformis is a skin presentation of coeliac disease. 

 

Phil announced as Coeliac UK Food Ambassador

 

Coeliac UK logoCoeliac UK, the national charity for people with coeliac disease, announced that Phil is their new Food Ambassador and that he will be judging this year’s Gluten-Free Chef of the Year competition.

The competition is launched in association with the Institute of Hospitality and the Craft Guild of Chefs for chefs throughout the UK to design a three course gluten-free meal with a cookoff for the three finalists in each group which will take place at KNORR’S Kitchen Culinary Business Development Centre in Leatherhead in November 2010.

Phil has worked with Coeliac UK for the past few years to help raise awareness of the condition and for the need for more catering establishments to offer gluten-free menu options. Last year in association with the Charity he published a best selling cookbook, Seriously Good Gluten-Free Cooking which has sold over 70,000 copies worldwide.

Food Ambassador

“I am very honoured to accept the role as Coeliac UK’s Food Ambassador and to continue to support the work of the Charity. I’m passionate about improving knowledge in the food industry and the necessity for more gluten-free cooking as more and more people are diagnosed. Since embarking on the cookbook I have learnt so much and it is essential that chefs understand the importance of having gluten-free recipes. I am therefore delighted to be judging this year’s competition and urge chefs of all experience to enter.”

 

To read the full press release click here

 

About Coeliac UK

Coeliac UK logoCoeliac UK is the leading charity working for people with coeliac disease and Dermatitis Herpetiformis (DH). Thier mission is to improve the lives of people with coeliac disease through support, campaigning and research.

Coeliac UK want to see the needs of people with coeliac disease and DH recognised by everyone and met in their everyday lives and do this by:
 
  • Providing expert and independent information to help people manage their health and diet
  • Campaigning on their behalf to improve access to fast diagnosis, good medical treatment and safe foods - in the home and out
  • Researching new treatments and the possibilities of a cure.

Anyone who has been medically diagnosed with coeliac disease can join the Charity. They have over 50,000 Members and over 1,000 newly diagnosed Members join each month.

The Coeliac UK Food and Drink Directory lists over 11,000 food and drink products and is free to Members. Updates are available monthly. It is the essential guide to a wide range of gluten-freefood and drink available throughout the UK and is also available online.

For further information see thier website www.coeliac.org.uk or contact our helpline Tel: 0845 305 2060

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