Coeliac disease

Coeliac disease and/or dermatitis herpetiformis (DH) is an auto-immune condition. One in 100 people are thought to have coeliac disease, however, it does run in families and in blood relatives the risk increases to around one in 10. Some people are more genetically susceptible than others.

Understanding coeliac disease

• Nutrients are absorbed in the gut by finger like projections called villi.
• In coeliac disease the lining of the gut is damaged when gluten is eaten.
• This causes the villi to become shorter and can even lead to complete flattening of the villi.
• When people with coeliac disease avoid gluten in food, the villi will grow back.

Gluten free diet

The treatment for coeliac disease is a strict gluten free diet. This needs to be followed for life. It aims to exclude the proteins collectively known as gluten, found in wheat (gliadin), barley (hordein), rye (secalin) and ingredients which derive from these. All dietary sources of gluten need to be avoided.

Sources of gluten include:

• bread
• biscuits
• pastries
• pasta
• beer
• cakes
• pizza bases
• flour
• cereals
  • barley
  • bulgar wheat
  • wheat
  • couscous
  • spelt
  • rye
  • kamut
  • pearl barley
  • durum wheat
  • semolina
  • einkorn
  • emmer
  • triticale.

Hidden gluten

Wheat flour is used as a processing aid, binder and filler and is also used to carry flavour. This is common in processed foods such as sausages, burgers, soups, ready meals, cheese spreads, sauces and frozen potato, including chips.

Medications and vitamin preparations, communion wafers, barley squashes, lager, stout and real ales.

Wine, cider, liqueurs and spirits are gluten free.

Naturally gluten free

Some cereals are naturally gluten free such as rice, maize (corn), potatoes, lentils, buckwheat, quinoa and amaranth. Other gluten free foods include fresh meat, poultry, fish and seafood, eggs, milk, fruit and vegetables.

Gluten free alternatives

Gluten free breads, pasta, biscuits and cakes are available. Supermarkets often have a special frozen section for these products and a ‘free from’ section.

What if I make a mistake?

Mistakes can happen when trying to follow a gluten free diet, especially in the early stages after diagnosis.
If you eat gluten by mistake you would normally have symptoms a few hours after. Symptoms and how long they last varies for each person. It can depend on how much gluten you eat and how sensitive you are to gluten.

If you have coeliac disease, eating gluten causes damage to your gut lining. If you occasionally make mistakes it is unlikely to cause lasting damage to your gut.

Why should I follow the diet?

• To improve any symptoms you may have and help you feel well.
• To allow the lining of your gut to heal so that nutrients can be absorbed from food properly. Even small amounts of gluten in the diet can be enough to damage your gut lining and cause symptoms. It can take at least a year for the villi to fully recover.
• To reduce long-term complications.

Shopping and food labels

Don’t forget your ingredient checklist or gluten free food and drink directory. This can be purchased from Coeliac UK. Some supermarkets also offer a list of its own products that are gluten free. These lists are available from its website or by phoning its customer care helpline.

All packaged food in the UK and the EU is covered by a law on allergen labelling. This means you can tell from an ingredients list whether a product contains gluten or not. There is a law which covers the use of the term ‘gluten free’.

• Gluten free – applies only to foods which contain 20 parts per million (ppm) or less of gluten.
• Very low gluten – foods which contain 21 to 100ppm gluten. Usually specialist products.
• No gluten containing ingredients – food legislation has recently changed and this term can no longer be applied to individual foods or on individual items on restaurant menus. It can still be used to indicate a list of products, for example in the supermarket a list of products on sale or as a title on a menu.

If a cereal containing gluten is used as an ingredient, it must be listed in the ingredients list, no matter how little of it is used. Manufacturers will name the specific grain used – see sources of gluten list.

The following ingredients are safe for people with coeliac disease:

• glucose syrups derived from wheat or barley including dextrose.
• wheat-based maltodextrins.
• distilled ingredients made from cereals that contain gluten, for example, alcoholic spirits.

Although these ingredients can be made from cereals containing gluten, manufacturers do not have to label them. Some manufacturers still list these, for example ‘glucose syrup from wheat’ or ‘wheat dextrose’. These ingredients are gluten free and suitable for people with coeliac disease.

If gluten is not present in a product it does not need to be labelled as ‘gluten free’ legally. Therefore, just because a product does not specify it is gluten free, this does not necessarily mean it isn’t gluten free.

Labels may say ‘may contain traces of gluten’, ‘made on a line handling wheat’ or ‘made in a factory also handling wheat’. This is voluntary and the manufacturers are noting that there is a risk of cross contamination of gluten. Unfortunately, these warning statements cannot provide clear-cut guidance on how suitable different foods are. For further information check your food and drink directory or contact the manufacturer directly.

Wheat free versus gluten free

If a product claims to be wheat free it is not necessarily gluten free, this is because gluten can be found in the product from other cereals, for example rye or barley.

Malt extract and barley malt extract

Malt extracts are widely used in food as a flavour enhancer. Foods that contain barley malt extract in smaller amounts can be eaten by most people with coeliac disease but these products have to be labelled as containing barley. The breakfast cereals listed in the food and drink directory by Coeliac UK have been tested for the overall level of gluten in the product and are suitable for people with coeliac disease.

Oats

Oats contain a protein which is similar to gluten but research shows that most adults and children can tolerate oats in their diet without risk. Care should be taken to avoid contaminated products. Many standard oats are produced in the same place as wheat, barley and rye.

It is recommended that gluten free oats are included in your diet from diagnosis as they increase dietary variety and are an excellent source of soluble fibre, which is important for a healthy bowel and heart. If you continue to have symptoms and are concerned oats may be a cause, discuss this with your dietitian at your appointments.

Prescriptions

People with coeliac disease are entitled to some gluten free foods on prescription. Your dietitian will give you a list of products available which include:

• long life gluten free bread
• fresh gluten free bread
• gluten free flour.

Cross contamination

Even small amounts of gluten can be enough to damage your gut lining and cause symptoms. Cross contamination can occur during storage, processing and manufacturing. At home avoid cross contamination by:

• using a separate toaster or using toaster bags
• using clean knives for butter spreads and jam or having separate spreads
• using separate chopping boards
• frying non-gluten foods before gluten foods or in separate oils.

Eating out

With a bit of planning, eating out and having a takeaway can be an enjoyable experience. It is important to think about what you will eat when you are away from home. Check availability in advance or take something with you.

Some restaurants have a gluten free menu or are able to provide gluten free meals. Notify the restaurant of your dietary requirements when booking the table if you are unsure. Don’t forget to check again when ordering your meal.

Certain takeaways are appropriate. Checking how food is prepared can ensure a gluten free meal. For example, if different oil is used to fry chips and battered products the chips will be suitable for a gluten free diet.

If gluten free products are not available it may be acceptable to ask if you can take your own gluten free bread, crackers or gravy.

If breaded items such as chicken or fish are offered, these may be sautéed in the same pans as non-breaded dishes. Ask the restaurant if it could use separate pans to avoid cross contamination.

Holidays

If you’re planning a holiday, check gluten free meals are available at your hotel. Many airlines and travel companies offer gluten free meals if requested at the time of booking. Taking some gluten free bread, biscuits or crackers with you may make it easier to find suitable foods when in an unfamiliar area.

Dietary cards that list foods suitable for a gluten free diet are available in many languages and Coeliac UK also offer travel guides for multiple countries. Visit www.coeliac.org.uk/gluten-free-diet-and-lifestyle/holidays-and-travel/country-guides for more information.

The embassy of your travel destination may be able to offer further help and information.

Calcium

It’s recommended that individuals with coeliac disease have more calcium than the general adult population. The calcium recommendations for those with coeliac disease are 1000 to 1500mg a day. Once we reach middle age we begin to lose bone, this is a normal part of aging; however, weak bones are more likely to fracture. Osteoporosis develops when bones are not strong enough. Your dietitian will assess your calcium intake and advise if a supplement is required.

Coeliac UK

Coeliac UK is the leading charity working for people with coeliac disease and dermatitis herpetiformis. If you become a member you will have access to a monthly magazine, a newsletter and a gluten free food and drink directory. Coeliac UK can be a very useful and informative resource; however, it does incur a joining fee. Your dietitian will discuss Coeliac UK with you.

You will find further information in your coeliac starter pack if you decide to join. Please do not hesitate to ask your dietitian if you have any further questions.