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.

Do

see a dietitian and get a step by step plan for removing gluten from your diet, and live a gluten free lifestyle
learn which foods are naturally gluten free
join the Gluten-free Food Service to access gluten free products on prescription through your local pharmacy, including an annual health check
talk to other people with coeliac disease
check your local supermarkets and the internet for gluten free products and information to help you shop and eat a gluten-free diet at home
join a support group

Making small changes to your daily diet and mindset will have a big impact on managing your condition.

Following a gluten-free diet 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. Charities such as Coeliac UK can give you information and support to understand coeliac disease and adapt to a gluten-free diet. This includes how to access local support groups.

Read Simon's story - using a support group (PDF, 9.8 MB)

Find a coeliac disease support group

Myths about coeliac disease

Myths about coeliac disease 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's 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 tested for coeliac disease again (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 mostly diagnosed in people aged 40 to 60 years old. Delayed diagnosis is common. It can take an average of 13 years to diagnose.

Myth: Coeliac disease is rare

Coeliac disease affects 1 in 100 people in the UK, making it much more common than previously thought.

Myth: Coeliac disease only affects people of European origin

Coeliac disease affects all ethnic groups. It's 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

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 from person to person.

Hints and tips

There's no cure for coeliac disease. 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'll help.

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. You should also take 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 and container for storing gluten free food
keeping cooking utensils separate during food preparation and cooking
do not fry 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 food containing gluten and gluten free food. 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. Check the labelling to make sure it's gluten free.

Labelling

Label checking becomes easier once you know what to look for. 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) easier to spot. Certified gluten-free oats are considered safe for people with coeliac disease.

If there's 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's 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 can change 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. If you're unsure about whether a venue can cater for you safely, do not eat there.

If you're served something that you think may not be gluten-free, don’t eat it. If in doubt, leave it out. If you know you're going to an event where it's likely there'll be no gluten-free options, make up something beforehand and take it with you.

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 can provide safely prepared gluten free food.

Further information about eating out with coeliac disease

More about eating out with coeliac disease:

Coeliac disease and your social life

Coeliac disease should not restrict your social life. 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.

Be patient, take time to explain the:

changes to your diet
importance of avoiding cross-contamination
impact that consuming gluten will have on your health

Over time, friends and family members will hopefully understand the nature of the condition.

Self-confidence

Having coeliac disease can be challenging but it's a manageable condition. Stay positive and focus 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 easy.

More hints and tips about living with coeliac disease (PDF, 4.9 MB)