Celiac (Coeliac) Disease

Coeliac disease mainly affects the small intestine (part of the gut). It can occur at any age. Coeliac disease is caused by a reaction of the gut to gluten. Gluten is part of certain foods – mainly foods made from wheat, barley and rye. Various symptoms can develop including abdominal pains, tiredness and weight loss. Symptoms go if you do not eat any foods that contain gluten.

WHAT IS COELIAC DISEASE?

Coeliac disease is a condition that causes inflammation in the lining of the small intestine (part of the gut). 

Coeliac disease is not a food allergy or a food intolerance. It is an autoimmune disease. The immune system makes white blood cells (lymphocytes) and antibodies to protect against foreign objects such as bacteria, viruses, and other germs. In an autoimmune disease, the immune system mistakes part or parts of the body as foreign. Other autoimmune diseases include type 1 diabetesrheumatoid arthritis and some thyroid disorders.

The lining of the small intestine contains millions of tiny tube-shaped structures called villi. These help food and nutrients to be digested more effectively into the body. But, in people with coeliac disease, the villi become flattened as a result of the inflammation. This means that food and nutrients are not so readily digested by the body.

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THE GLUTEN-FREE DIET

Managing coeliac disease simply involves removing all sources of gluten from your diet. There are sources that might seem obvious. However, there are some foods that might contain hidden sources of gluten. This is why it is important to understand what to look out for on food labels

Reading labels and identifying gluten in foods

By law, if a food contains gluten it must be listed on the label. You may see an allergen advice box saying ‘contains gluten’. Many processed foods contain gluten, as it is used as an additive or foods become contaminated during the production process. Therefore, it is important to check the labels when out shopping.

Avoid products that contain any of the following:

  • Wheat
  • Barley
  • Rye
  • Spelt
  • Oats (contaminated oats)
  • Malt and malted barley (found in breakfast cereals, vinegar, sauces, pickles and confectionary)

Not all foods that are gluten-free will mention this on the label, so always check to see whether it contains gluten. The crossed grain symbol is used by many manufacturers to highlight that a product is gluten-free. Some manufacturers may use their own symbol. Other products may simply state it on the packaging. For example, you may see:

  • Gluten-free
  • Suitable for coeliacs
  • Free from gluten

Foods that contain gluten

Checking the labels is useful when identifying foods that contain gluten. However, it’s helpful to have a general idea of what foods to avoid and what foods are allowed.

 

Food Group Foods Allowed Foods to Avoid
Cereals and flour Cornflour, polenta, potato, cassava, bean and lentil flour, split pea flour, millet, quinoa, buckwheat, rice (all types), maize, arrowroot, sorghum, teff, amaranth.Breakfast cereals allowed are: some branded and equivalent supermarket brands of corn or rice based cereals eg cornflakes, rice snaps, honey nut cornflakes. (Always check the label as some varieties may not be gluten-free.) Wheat, rye, barley, bulgar wheat, spelt, durum wheat, triticale, khorasan wheat (Kamut®), wheat flour, wheat starch, wheat bran, oat bran, semolina, couscous, malt and malted barley, bale.Avoid all wheat-based breakfast cereals and muesli.
Breads, cakes and biscuits Gluten-free products specially manufactured (supermarkets have specialised ranges): eg, breads, biscuits, pizza bases, flour mixes, cakes. Products made from cereals or flours from the allowed list. Products made without flour (check the label for other gluten sources) or with gluten-free flour. All bread and bread products- eg, croissants, bagels, pitta bread, chapatti, naan bread, crispbreads, crackers, matzos, muffins, scones, croutons, pancakes, pizza, yorkshire puddings, wafers and ice cream cones, pastries and pies.
Pasta, rice and noodles All types of fresh rice. Rice noodles (check the label). Gluten-free pasta, corn pasta. Any fresh, dried or tinned pasta, and noodles. Processed rice found in salads or ready meals.
Potatoes All fresh potatoes. Some crisps (check the label). Home-made chips made from fresh potatoes. Processed potatoes – eg, potato salad, waffles, some chips, instant mash, crisps or potato snacks
Meat, fish and poultry All fresh meat, fish and poultry. Tinned fish- eg, tuna/salmon. Smoked, kippered or dried fish. Gluten-free sausages. Gluten-free fish fingers. Some processed meats or products coated in batter or breadcrumbs. Pies, puddings, suet, stuffing, fish fingers, chicken nuggets, fishcakes, sausages, burgers, haggis, taramasalata, rissoles, Quorn®.
Milk, dairy, eggs and dairy alternatives Natural plain cheese, fresh milk, cream, condensed milk, yoghurts, fromage frais, soya milk, goat’s milk, coconut milk, almond milk, rice milk, dried skimmed milk powder, eggs. Check the labels of processed cheese, low-fat cheese spreads, artificial cream and yoghurts. Yoghurts containing muesli or cereals. Scotch eggs.
Fats and oils Vegetable oil, olive oil, butter, lard, reduced fat/low-fat spreads (check the labels). Suet, some brands of low-fat spreads.
Fruit, vegetables, nuts and pulses Fresh, dried or tinned fruit, vegetables, nuts, beans, pulses and seeds. Check labels of some baked bean brands. Processed fruit and vegetables that are coated in breadcrumbs/or in sauces. Some brands of nuts
Desserts and puddings Meringues, sorbets, ice creams, jelly, mousses, custard powders, milk puddings made with gluten-free ingredients. Always check labels of these food products. Trifles, sponge puddings, semolina, tarts, and puddings made from flours in the ‘foods to avoid’ list.
Snack foods Prawn crackers, rice cakes, poppadoms, home-made popcorn, gluten free crisp breads and crackers. Pretzels, Bombay mix, snacks made from flours in the ‘foods to avoid’ list.
Confectionary, sweets and preserves Sugar, golden syrup, icing sugar, treacle, molasses, jam, honey, marmalade, peanut butter, boiled sweets and jellies. Some chocolate bars, toffees and sweets (always check labels).
Soups, sauces and seasonings Fresh salt and pepper, herbs, spices, vinegars (eg, rice wine, balsamic), homemade fresh soups, gluten-free soups, sauces and seasonings. Malt vinegar, packet soups and sauces, gravies, soy sauce, ketchups, mayonnaise, salad dressings, pickles and chutneys, stuffing and stuffing mixes, stock cubes, bouillon, Worcestershire sauce (some brands may be gluten-free).
Drinks and alcohol Tea, coffee, fizzy drinks, squashes, cordials, fresh juices, milk, some cocoa powders, cider, spirits, wines, liqueurs, sherry, port. Barley drinks or squashes, cloudy fizzy drinks, malted milk drinks, instant vending machine drinks, some milkshakes and sports drinks, beer, lager, stout, ale.
Other Bicarbonate of soda, fresh and dried yeast, marzipan, yeast extracts, tofu, food colourings and flavourings, gelatine. Baking powder, some medicines and vitamins.

Foods naturally free from gluten

If foods are being excluded from the diet, it is important to ensure you are still having a balanced diet to get all the nutrients you need. Foods naturally free from gluten include fruit, vegetables, meat, fish, rice, potatoes, beans, pulses, nuts, eggs, milk and dairy. Sticking to a gluten-free diet can be difficult, so including plenty of these in the diet will make it easier.Read more blog posts »

Gluten-free alternatives

Living with a diet free from gluten can be difficult, and so there are products available to help keep the diet varied and easier to maintain. These products will also help to provide you with the energy and nutrients you need.

There is a wide range of gluten-free products available. It’s likely that you’ll find gluten-free alternatives of most foods. Products available include the basics such as gluten-free bread, pasta, flour, plain biscuits and cakes, crackers, crispbreads and pizza bases. Luxury products include biscuits, cakes, muesli, muffins, stuffing mix, confectionary, cereal bars, fish fingers, chicken nuggets and other convenience foods.

Many of the supermarket chains have gluten-free ranges. Some companies that provide gluten-free products include:

  • Free From
  • Juvela
  • Glutafin
  • Genius
  • Ener-G
  • DS-gluten free
  • Warburtons
  • Proceli
  • Barkat

Some companies offer free starter packs, so you can try a range of products and find ones that you prefer. Some gluten-free products contain Codex wheat starch, which improves the taste and texture of these items. This contains a very low level of gluten, which has been shown to be tolerated by most of those with coeliac disease. However, a small percentage of people who are highly sensitive to gluten may find that symptoms occur and so choosing products without Codex wheat starch may be more appropriate.

Gluten-free products can be expensive. However, you can get some of these products on prescription. Talk to your GP to get a prescription. Basic gluten-free products are usually available on prescription, although luxury items are not.

Oats

Oats can be part of a balanced diet in most people with coeliac disease, without causing damage or symptoms. These must be pure, uncontaminated oats and so some products available on supermarket shelves may not be suitable. A list of manufacturers’ products that are safe and free from contamination can be found on the Coeliac UK website (see below) and in their Food and Drink Directory.

Oats can be a useful addition to the diet, as they are a valuable source of fibre and improve variety in the diet. This makes it easier to comply with a gluten-free diet. However, oats should be excluded for the first six months after diagnosis. This allows your body to become used to a gluten-free diet. Oats can then be gradually introduced but should be done with the assistance of a dietician in case you react to pure oats.

 

Lifestyle advice

Eating out

When eating out it can be helpful to prepare and plan ahead. Call ahead to the chef to ask about gluten-free choices on the menu and explain your dietary needs. Some restaurants will be happy to cater for your needs and adjust dishes accordingly. Remember that cross-contamination can occur in restaurant kitchens and consider hidden sources of gluten that may be in restaurant foods. For example, sauces and gravies are often thickened with flour. Sometimes, chips may be fried in oil that has been used for deep-frying other products such as foods coated in batter or breadcrumbs.

Communicate with friends and family, explaining about cross-contamination, appropriate gluten-free foods and sources of gluten that may not be obvious. For example, some herbs, spices and flavourings.

Coeliac UK has a venue guide, highlighting the appropriate places to eat that are coeliac-friendly.

WHO DOES COELIAC DISEASE AFFECT?

Coeliac disease affects about 1 in 100 people in the UK. Anyone, at any age, can develop coeliac disease. It is a condition that used to be associated with young children. However, it is now much more commonly diagnosed in adults. It is most commonly diagnosed in people aged between 40 and 50. About 1 in 4 cases are first diagnosed in people aged over 60.

Coeliac disease often runs in families. If you have a close family member who has coeliac disease (a brother, sister, parent or child) then you have a 1 in 10 chance of developing coeliac disease. It is also more common in people who have other autoimmune diseases – for example, some thyroid diseases, rheumatoid arthritis and type 1 diabetes.

WHAT CAUSES COELIAC DISEASE?

The cause is a sensitivity to gluten. Gluten occurs in common foods including wheat, barley, and rye, and any foods made from these such as bread, pasta and biscuits. Some people with coeliac disease are also sensitive to oats.

People with coeliac disease make antibodies against gluten. Antibodies are proteins in the immune system that normally attack bacteria, viruses, and other germs. In effect, the gut mistakes gluten to be harmful, and reacts against it as if it were fighting off a germ. These antibodies lead to inflammation developing in the lining of the small intestine. 

Coeliac disease can develop in babies. Older children or adults who have not previously had problems may also become gluten-sensitive at some point in their life and develop coeliac disease. It is not known why the immune system of some people becomes sensitised to gluten.

WHAT ARE THE SYMPTOMS OF COELIAC DISEASE?

The inflammation in the lining of the small intestine stops food from being properly absorbed. You then do not absorb nutrients very well into your body. A variety of symptoms may then develop.

 

Babies

Symptoms first develop soon after weaning when the baby starts eating solid foods containing gluten. The baby may fail to grow or to gain weight. As food is not being absorbed properly, the faeces (stools) may be pale and bulky. Smelly diarrhoea may occur. The abdomen (tummy) may become swollen. The baby may have repeated vomiting.

Older children

The symptoms of coeliac disease in older children may be similar to those in babies. Poor absorption of food may cause deficiencies of vitamins, iron, and other nutrients. This may cause anaemia and other problems. As the fat part of the diet is poorly absorbed, the faeces may be pale, smelly and difficult to flush away. Diarrhoea may develop. However, the symptoms may not be very typical or obvious. If the gut and bowel symptoms are only mild then the first thing that may be noticed is poor growth.

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Adults

Poor absorption of food may cause deficiencies of vitamins, iron, and other nutrients. Anaemia due to poor absorption of iron is common. Other common symptoms include: abdominal pains which tend to come and go, excess wind, bloating, diarrhoea, and tiredness or weakness. Mouth ulcers may occur. You may lose weight due to poor absorption of food. However, most adults with coeliac disease do not lose weight and are not underweight.

Occasionally, an itchy skin condition called dermatitis herpetiformis can occur in some people with coeliac disease.

If the common symptoms described above develop, the diagnosis may be made quickly. However, common or typical symptoms do not always develop. Particularly in adults, the areas affected in the gut may be patchy. Symptoms may then be mild, or not typical, and it may be a while before the diagnosis is made.

HOW IS THE DIAGNOSIS CONFIRMED?

If coeliac disease is suspected, a blood test to detect a certain antibody that occurs in coeliac disease may be advised by your doctor. It is important that you are eating a diet containing gluten for at least six weeks before the blood test is performed. 

If the blood test is positive, then you may be referred to a specialist who may arrange for a biopsy to be taken. The biopsy is small sample of tissue that is taken from the inside lining of the small intestine. This is looked at with a microscope to see if the typical changes of coeliac disease are present. The biopsy is usually taken by a thin flexible tube (endoscope) which is passed down the gullet (oesophagus), through the stomach and into the small intestine.

Other tests may be done to find out how much the poor absorption of food and nutrients has affected you. For example, blood tests for anaemia and for the levels of vitamins, iron, protein, etc. You may be advised to have a special bone scan (a DEXA scan) to see if your bones have become affected due to poor absorption of calcium and vitamin D. 

Note: if you suspect that you may have coeliac disease from your symptoms, then see a doctor. Do not treat yourself by going on a gluten-free diet (described below) without a confirmed diagnosis. If you do go on a gluten-free diet before the diagnosis is confirmed, then any tests done at a later time may not be conclusive and may even give negative results. So, get it checked out first – and then treat it if it is confirmed.

ARE THERE SCREENING TESTS FOR COELIC DISEASE?

Coeliac disease tends to be under-diagnosed. There are certain groups of people who are much more likely to have coeliac disease than others. They should have a test for coeliac disease even if they have no or few symptoms. This includes people with:

  • Type 1 diabetes: if available, children should be tested for the most common gene types that are associated with coeliac disease. These are HLA-DQ2 or HLA-DQ8. If they do not have these types, they are extremely unlikely to develop coeliac disease. If this test is not available they should have the blood test for the specific antibody, every three years.
  • Close relatives (parent of, child of, brother/sister of) of a patient with coeliac disease.
  • Down’s syndrome
  • Autoimmune conditions such as thyroiditis, Sjögren’s syndrome or arthritis.

WHAT ARE THE TREATMENTS FOR COELIAC DISEASE?

Gluten-free diet

The main treatment for coeliac disease is not to eat any food that contains gluten for the rest of your life. The symptoms then usually go within a few weeks. The main foods to stop are any that contain wheat, barley, or rye. Many common foods contain these ingredients, such as breads, pasta, cakes, pastries and some cereals. Foods made from oats are usually safe to eat. However, some people with coeliac disease have symptoms if they eat oats. Potatoes, rice, maize, corn, fruit, dairy products and soya-based foods are fine.

You should get advice from a dietician. Coeliac UK also provides advice about which foods are suitable (see address below). You can buy special gluten-free flour, pasta, bread and other foods. These are also available on prescription, from health food shops, by mail order and via the internet. There are many diet sheets with food alternatives and recipes. Unfortunately, many processed foods, ready-made meals, and fast foods contain gluten. Food labels will often say whether the food contains gluten or not.

Avoiding gluten is for life. If you eat gluten again, symptoms will return. Even small amounts of gluten can sensitise the gut again. To avoid symptoms and complications (see below), you must be strict about avoiding all foods that contain gluten.

You may have to accept some restriction on lifestyle. However, the many foods that are allowed are varied and interesting.

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Other treatments

In addition to avoiding gluten, you may be advised to take some vitamin, calcium and iron supplements, at least for the first six months following diagnosis. This is to replace any deficiencies and also to make sure you get enough of these whilst the gut lining is returning to normal.

Having coeliac disease can cause your spleen to work less effectively, making you more vulnerable to infection from certain germs. If your spleen is working less effectively, you may need to have several immunisations including:

  • The flu (influenza) jab.
  • The Hib vaccine – which protects against blood poisoning, pneumonia, and Hib meningitis.
  • The pneumococcal vaccine – which protects against infections caused by the bacterium Streptococcus pneumoniae.

ARE THERE ANY COMPLICATIONS?

Although there is no once and for all cure for coeliac disease, the symptoms can be kept away by having a diet free from gluten. Also, having a gluten-free diet reduces the risk of developing complications in the future.

Apart from the symptoms listed above, people with coeliac disease have an increased risk of the following:

  • Developing osteoporosis (thinning of the bones) due to the nutritional deficiencies which occur with coeliac disease.
  • Developing lymphoma (a type of cancer) of the gut in later life. This is rare.
  • Developing other immune-related diseases (autoimmune diseases) such as type 1 diabetes, an underactive thyroid, Sjögren’s syndrome and primary biliary cirrhosis.
  • Having a baby that has a low birth weight or is born prematurely if you become pregnant.

A common mistake is to eat small amounts of food which contain gluten. This may be unintentional. However, some people wrongly think that a small amount won’t matter. It does. A well-known example is thinking that the small amount of bread in a communion wafer will not matter. Even this small amount of gluten is sufficient to cause symptoms, and to maintain the increased risks associated with coeliac disease detailed above.

Some people with coeliac disease may not realise they are taking small amounts of gluten. They may feel well, or ignore mild symptoms such as bloating or mild diarrhoea. Again, the increased risks (osteoporosis, etc) still remain if any gluten is eaten.

If you do not eat any gluten, you can expect to be free of symptoms and to have a normal healthy lifespan. The increased risk of developing other autoimmune disorders reduces. Eating a gluten-free diet also reduces the risk of developing lymphoma.

FOLLOW-UP

Once you have been diagnosed with coeliac disease, you are likely to have regular follow-up appointments. This may initially be after three and six months to ensure that you are making satisfactory progress and managing your gluten-free diet. Depending on your age and other factors, you may be monitored to see if you have developed osteoporosis.

You can expect to live a life free of the symptoms of coeliac disease if you totally avoid gluten.

FURTHER HELP AND INFORMATION

3rd Floor, Apollo Centre, Desborough Road, High Wycombe, Buckinghamshire HP11 2QW
Helpline: 0845 305 2060 Web: www.coeliac.org.uk

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Helpline number: 0845 305 2060