coeliac disease

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Coeliac Disease

FACT: There are thought to be at least 125,0001 people diagnosed with the coeliac condition in the UK and the numbers are increasing.

On average over 7,000 people are diagnosed with coeliac disease in the UK each year. Experts researching the condition believe that the disease may affect as many as 1 person in every 100 with the majority of those undiagnosed.

Many people visiting their GP with unexplained symptoms may initially be diagnosed with “irritable bowel syndrome” (IBS) before further investigations reveal they are suffering from coeliac disease.

FACT: The word “coeliac” is derived from the Greek word koiliakos meaning “suffering in the bowels”

Coeliac disease (pronounced see-lee-ak, or sometimes spelt “celiac”) is often spoken about in terms of food allergies and food intolerances but is in fact an auto-immune disease, like type 1 diabetes.

When someone has a food allergy, their immune system reacts to a particular food to produce a physical, sometimes life-threatening reaction (e.g. to nuts). Food intolerances do not usually involve the immune system. They are generally not life-threatening. However, if someone eats a food they are intolerant to, this could make them feel ill or affect their long-term health.

Coeliac disease is an auto-immune disease which is caused by gluten intolerance. Gluten is a protein found in wheat, rye, barley and possibly oats. Eating foods containing gluten has a life-long damaging effect on the bowel.

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FACT: Coeliac disease can cause symptoms of malnutrition as food and nutrients remain undigested

The finger-like projections in the bowel called villi, which aid the absorption of food, are destroyed by the gluten. So although a person may be following a well balanced healthy diet, they may develop symptoms such as weight loss, diarrhoea and anaemia as their body fails to absorb enough nutrients from food.

FACT: Coeliac disease affects both men and women of all ages

Coeliac disease was once considered a rare condition of childhood. Doctors are now seeing the disease in both children and adults. Coeliac disease in adults is commonly diagnosed between the ages of 30 and 45, but more and more people are being diagnosed in later life.

FACT: Symptoms in adults vary from person to person

Adults can experience a number of different symptoms including anaemia, diarrhoea, weight loss and fatigue. Other signs may be infertility, unexplained abdominal pain and generally feeling unwell. These symptoms can occur together or separately, be mild or severe. Occasionally, the stress of an operation, accident, intestinal infection or pregnancy can trigger the onset of this illness.

FACT: Symptoms in childhood normally occur at the weaning stage

Children who have been perfectly healthy from birth may fail to thrive at weaning. They may become irritable, have diarrhoea, vomiting, and pass pale stools. Older children may just stop growing and have less obvious symptoms.

FACT: Coeliac disease does have a tendency to run in families

Recent research has established that there is a genetic link to coeliac disease. One in 10 close relatives of a person diagnosed with coeliac disease may also be affected, so family screening is recommended.

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FACT: Coeliac disease can only be confirmed by an endoscopy

Blood tests are now widely used to help screen for the condition. Self-testing kits are a useful starting point, but are not 100% accurate. Coeliac UK recommends that anyone who thinks they may have coeliac disease should visit their GP for further investigation.

Your GP will then refer you to a gastroenterologist who will carry out a small intestinal biopsy (endoscopy), the only official way to confirm that you definitely have coeliac disease. This procedure normally takes place in an outpatient clinic, under mild sedation. A section of the lining of the bowel is taken and the villi examined under a microscope.

FACT: There is no miracle cure for coeliac disease. The treatment is a gluten-free diet for life

It is still not exactly clear how gluten damages the bowel, however experts agree that once a gluten-free diet is followed the villi grow back. This means the body absorbs nutrients as normal and the symptoms disappear. Although the benefits of the diet can often be felt immediately, it can take many months before the
bowel completely recovers.

FACT: Expert dietary advice is available to all people diagnosed with coeliac disease

After diagnosis you should be referred to a Registered Dietitian. If you are not referred, make sure you ask your GP or consultant for a referral. The dietitian will provide you with practical advice on how to follow a gluten-free diet and assess your food intake to ensure you meet your nutritional needs. You will also
be given information on special gluten free products.

FACT: A gluten-free diet means avoiding all foods containing gluten

The main source of gluten in the diet is wheat flour, which is used in the manufacture of many foods including bread, cakes and biscuits. Other possible sources of hidden gluten are sauces, sausages, ready meals and confectionery.

Although recent studies suggest that 'pure' oats may be tolerated by some people with coeliac disease, it is extremely difficult to source oats that are not contaminated. Do not include oats in your diet unless you have discussed this with your gastroenterologist or dietitian.

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Dermatitis herpetiformis & other linked conditions

FACT: Dermatitis herpetiformis is a skin condition linked to coeliac disease

Dermatitis Herpetiformis (DH) is a skin condition which like coeliac disease is due to gluten sensitivity.

People with DH have a very itchy skin rash which usually occurs on the buttocks, shoulders and knees. A biopsy of their small bowel will show damage to the villi in their small intestine. It is quite a rare condition affecting around 1 in 10,000 people.

The skin rash shows direct improvement when sufferers follow a strict gluten-free diet. If you suspect you may have the symptoms of this condition please seek proper medical advice before starting a gluten-free diet.

FACT: Coeliac disease is closely associated with other medical conditions

It is now known that coeliac disease is associated with some other medical conditions. This means that people with these conditions have a higher risk of developing coeliac disease. The medical conditions include Type 1 diabetes, Down's syndrome and a range of auto-immune disorder including Thyroid disease, Liver disease, Addison's disease and Sjörgen's syndrome.

If you are concerned about any of these related conditions please seek proper medical advice.

Gluten-Free diet

FACT: Many foods are naturally gluten-free

Naturally gluten-free foods such as rice, corn, soya, potato, pulses, fresh meat, fish, dairy products, fruit and vegetables can be eaten freely.

FACT: Special gluten-free foods help coeliacs comply with the diet

To make a gluten-free diet more varied and adaptable, a number of specially manufactured gluten-free products have been developed. These include bread, biscuits, flour mixes, breakfast cereals, pizza bases and pasta. Many of these gluten-free products are available on prescription5 for people medically diagnosed with coeliac disease. If you pay for prescriptions you might consider buying a prescription “season ticket”. Ask your pharmacist for details.

FACT: A person with coeliac disease who follows a well balanced gluten-free diet can expect to lead a full and healthy life

To remain healthy, a gluten-free diet has to be followed carefully for life. For some, just a small amount of gluten will cause an immediate and violent reaction. For others, the odd indiscretion may not cause any obvious symptoms, but there will have been some internal damage to the lining of the bowel. People with untreated coeliac disease have an increased risk of developing osteoporosis and a slightly increased risk of developing bowel cancer. Studies show that following a balanced, strict gluten-free diet, with adequate calcium, can reduce this risk.

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