Living well with coeliac disease

Living with coeliac disease can be challenging but with the right support and information, it's completely manageable.

There are some things you can do which will help you cope better with your condition and diet. These include:

• seeing a dietitian and getting a step by step plan for removing gluten from your diet, and living a gluten free lifestyle
• learning which foods are naturally gluten free
• joining the Gluten-free Food Service to access gluten free products on prescription through your local pharmacy, including an annual health check
• approaching the gluten free manufacturers and asking for free sample packs to be sent to you to try
• talking to other people with coeliac disease
• checking out your local supermarkets and the internet for gluten free products and information to help you shop and eat a gluten free diet at home
• joining a support group

Making small changes to your daily diet and mindset will have a big impact on managing your condition. Read more hints and tips on how to live well with coeliac disease.

Following a lifelong gluten free diet may seem daunting at first but it does not mean you can’t enjoy food, and the social aspects of food, like everyone else.

Support groups

There is a large community of people with coeliac disease and charities such as Coeliac UK who exist to help give you the information and support needed to understand coeliac disease and adapt to a gluten free diet, including access to local support groups in your area.

Joining your local coeliac disease support group is a good way to meet people who really understand what you are going through. They can help give you advice on how to live well with coeliac disease and support you whilst you're adapting to your new lifestyle.

To find your nearest coeliac disease support group, visit Coeliac UK.

More about Simon's story - using a support group

Myths about coeliac disease that could prevent people from getting the right help.

Myth: Coeliac disease is a food allergy

Coeliac disease is not a food allergy or an intolerance, it is an autoimmune disease. In coeliac disease, eating gluten causes the lining of the small intestine to become damaged. Other parts of the body may be affected.

Myth: A breadcrumb won’t hurt someone with coeliac disease

Even very small amounts of gluten can be damaging to people with coeliac disease. Therefore, taking steps to avoid cross contamination with gluten is important. Even if you're experiencing no symptoms you're still damaging your body.

Myth: You can ‘grow out’ of having coeliac disease

Coeliac disease is a lifelong condition. The gluten-free diet is the only treatment for coeliac disease. If gluten is introduced back into the diet at a later date, the immune system will react and the gut lining will become damaged again.

If someone following a gluten-free diet is retested for coeliac disease (antibody blood test, gut biopsy) it would be expected that the tests are negative. This means they are responding well to the gluten-free diet. There are no antibodies in the blood because there is no gluten for the immune system to react against. Taking gluten out of the diet allows the gut to heal.

Myth: Only children get coeliac disease

Coeliac disease can develop and be diagnosed at any age. It may develop after weaning onto cereals that contain gluten, in old age or any time in between. Coeliac disease is most frequently diagnosed in people aged 40-60 years old. Delayed diagnosis is common and research shows the average time it takes to be diagnosed is 13 years.

Myth: Coeliac disease is rare

Research shows that coeliac disease affects 1 in 100 people in the UK, making it much more common than previously thought. Under diagnosis is a big problem and research suggests around 500,000 people have not yet been diagnosed.

Myth: Coeliac disease only affects people of European origin

Coeliac disease affects all ethnic groups and is common in Europe and North America, as well as in southern Asia, the Middle East, North Africa and South America.

Myth: You have to be underweight to have undiagnosed coeliac disease

Recent research suggests that most people with coeliac disease are of normal weight or overweight at diagnosis. Body weight alone should not be used to decide whether or not you should be tested for coeliac disease.

Myth: You have to have gut symptoms such as diarrhoea to have coeliac disease

Coeliac disease is known as a 'multi-system' disorder - symptoms can affect any area of the body. Symptoms differ between individuals in terms of type and severity.

Read more about symptoms of coeliac disease.

There is no cure for coeliac disease and the only treatment is to strictly follow a lifelong gluten free diet. However, there are many changes you can make to your daily routine and eating habits that will help you live well with the condition and to live well gluten free.

Gluten free in the home

Many recipes for dishes are gluten free or can be easily adapted to be made gluten free. You should make your kitchen a safe environment for storing and making gluten free food taking steps to avoid cross-contamination risks. You can do this by:

• having a separate area in the kitchen for preparing gluten free food
• having a separate area for storing gluten free food
• keeping cooking utensils separate during food preparation and cooking
• avoiding frying food in the same oil that has previously been used to cook foods which contain gluten
• using a clean grill, separate toaster or toaster bags to make gluten-free toast
• using separate breadboards and wash surfaces thoroughly
• using separate condiments like jam, butter, mustard and mayonnaise.

The same pots and pans can be used for cooking gluten free and gluten containing dishes if they are washed thoroughly using normal cleaning products between cooking the gluten free food and the food containing gluten. Never use the same pan to cook both together.

When an oven is being used to cook both gluten free and gluten containing dishes, put the gluten free dish above the gluten containing dish.

Some households will choose to go gluten free entirely to make it easier for the individual with coeliac disease. Alternatively, educating non-coeliac household members about cross-contamination risk will help them understand and make the kitchen a safer place.

Shopping for gluten free food

All supermarkets have a ‘free from’ section. This contains many everyday products that have had the gluten removed like bread, cereal, pasta, crackers and biscuits.Many supermarkets will also have free from sections in their chilled and freezer cabinets containing many more gluten free products such as ready meals, burgers, sausages, pizzas and desserts.

Do not feel restricted to shopping from the ‘free from’ section. There are lots of food products in the supermarkets which are naturally gluten free, these include:

• fruit
• vegetables
• fish
• nuts
• eggs
• dairy products

Many processed foods contain gluten such as ready meals, sausages, sauces and snacks so it's very important to check the labelling to make sure it's gluten free.

Labelling

It can be daunting at first to understand which food products contain gluten. Products with the crossed-grain symbol, or a specific gluten-free label, are gluten free.

If there isn’t an obvious gluten free symbol or gluten free label on the packaging, you’ll need to read the ingredients. By law, allergens must be highlighted, which makes the things to avoid (wheat, barley, rye, oats) easier to spot.

If there is no mention of any of these ingredients, the final step is to check whether there is a ‘may contain’ statement on the packaging. If it states that, for example, 'this product may contain traces of wheat' or ‘made in a factory that handles gluten’, it means there is a chance the product may be contaminated.

Many people faced with this statement will avoid the product but it's up to each individual to make their own decision.

Eating out with coeliac disease

There are lots of places to eat out, many venues have a gluten free menu or are willing to adapt dishes to be gluten free.

Preparation is key. Contact the venue in advance, explain you have coeliac disease and follow a strict gluten free diet and ask what options they can provide. Ask about their processes in the kitchen for avoiding cross-contamination.

When at the venue, speak again to the staff to make sure they can cater for you. Trust your instincts. If unsure about whether a venue can cater for you safely, do not eat there.

If you are served something that you have some uncertainty about whether it is gluten free, don’t eat it. If in doubt, leave it out. If you know you are going to an event where food is being sold or served and it is likely there will be no gluten free options then make-up something beforehand and take it with you. Alternatively, eat before you go.

If you're eating from a deli or a vendor, by law you have to be told either verbally or in writing if the product contains any of the 14 main allergens, including gluten.

Coeliac UK has accredited a number of venues, both chains and independent venues, across the UK. The accreditation means that the venue has demonstrated that they can provide safely prepared gluten free food.

More about eating out with coeliac disease:

• Niamhs's story
• Alison's story

Coeliac disease and your social life

Coeliac disease should not restrict your social life as many restaurants, venues and caterers provide gluten free options.

When you’re newly diagnosed, it can be challenging explaining to friends that certain venues are no longer suitable, but good friends will be understanding. If you can't eat at a suggested restaurant, it can be helpful to offer a few gluten free food suggestions as alternatives.

Some people assume that being gluten free is a lifestyle choice rather than a medical necessity, and sometimes patience is needed in explaining you must avoid eating gluten.

Be patient, take time to explain the changes to your diet and the importance of avoiding cross-contamination and the impact that consuming gluten will have on your health. Over time, friends and family members will hopefully understand the nature of the condition.

Having coeliac disease does remove a certain amount of spontaneity to your social life but it doesn’t mean your social life is over.

Self-confidence

Having coeliac disease can be challenging but it's a manageable condition. Stay positive and focused on the huge impact your managed diet can make to your health and the way you feel.

The person that’s in control of it is you and the better you explain the condition to others, the more support you’ll get. Be flexible and don’t be afraid to ask the extra question about how your food is cooked.

Over time, asking questions about the food you can eat will become second nature.

More hints and tips about living with coeliac disease