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Coeliac Disease

Everything you need to know about living well with coeliac disease

  • Introduction
  • Symptoms
  • Treatments
  • Daily Living
  • Support
  • Glossary

Introduction

If you or someone you know has been given a coeliac disease diagnosis, this guide may help you understand more about the condition.

You may be wondering, what is coeliac disease? NRS Healthcare are here to help explain this, as well as explore coeliac disease symptoms, treatments for coeliac disease, what causes coeliac disease, and types of coeliac disease. We hope you find this guide useful, and we hope it raises awareness of the signs of coeliac disease.

Introduction

What is coeliac disease?

Coeliac disease is an auto-immune condition caused by the body reacting to a protein called gluten, which is present in some foods such as wheat. It can develop at any age but is most common in people aged 20-40 years old. Around 1 in 100 people in the UK have a coeliac disease diagnosis, but it’s thought that many more may be living with the condition undiagnosed.

Coeliac disease symptoms are varied but usually involve the gut and digestion. The condition is not curable but many people find they can manage their symptoms using a gluten-free diet. For a small number of people with coeliac disease, simply avoiding gluten may not help their condition.

Read more about coeliac disease.

What causes coeliac disease?

The body’s immune system is made up of tissues, cells and organs that all work together to defend the body against disease, viruses and bacteria. For some people, the immune system can become dysfunctional which can lead to an autoimmune system developing. This is where the immune system mistakenly attacks the body’s own tissues, believing it to be fighting an invading organism. Coeliac disease is an autoimmune disease. Another example of an autoimmune disease is rheumatoid arthritis.

Coeliac disease causes the body to attack the surface of the small bowel, damaging the delicate villi that absorb nutrients from food. This causes coeliac disease symptoms, such as digestive problems (constipation, bloating, diarrhoea, sickness) and a host of other symptoms, due to the body being unable to absorb nutrients through the damaged gut. It is not clear what triggers coeliac disease, but the condition sometimes occurs with other autoimmune diseases.

Read more about what causes coeliac disease.

Did you know... "Coeliac disease is an autoimmune condition where the body reacts to gluten."

Coeliac Disease Symptoms

Here we describe the most common symptoms of coeliac disease.

Everyone experiences coeliac disease differently, but the majority of people will experience some or all of the coeliac disease symptoms we talk about here. The condition varies from person to person, depending on how badly the gut is affected and damaged. The longer it takes to receive a diagnosis of coeliac disease, the worse symptoms are likely to become, so seeking medical assistance when symptoms begin is really important, as is pushing for the appropriate tests to ascertain the cause of symptoms.

Introduction

Common coeliac disease symptoms include:

• Digestion problems, which may be severe, persistent or recurring e.g. bloating, being or feeling sick, diarrhoea, wind, constipation

• Stomach pains or cramps

• Fatigue or frequent, unexplained tiredness

• Anaemia

• Weight loss

• Rashes

• Mouth ulcers

• Numbness or tingling, mostly in the hands

• Deficiencies in key nutrients e.g. iron, B12, folic acid

• Fertility problems

Ataxia

• Psychological issues e.g. anxiety or depression

Some people may be more at risk of developing other autoimmune conditions if they have coeliac disease, such as thyroid disease or rheumatoid arthritis. Some people also develop conditions such as diabetes, or osteoporosis, due to the nutrient deficiencies that coeliac disease causes.

If you have any of the symptoms listed above, this does not mean you definitely have coeliac disease, but you should visit your GP to get these checked in order to find out the cause. These symptoms are often reflected in many other health conditions as well as coeliac disease.

Find out more about coeliac disease symptoms.

Diagnosis of coeliac disease

Coeliac disease diagnosis can take a little time. Some people do not visit their GP until their symptoms are unmanageable and causing them great distress. Others may visit their GP at an earlier stage. Either way, there is a chance that the condition may be misdiagnosed as irritable bowel syndrome, food intolerance or another condition. GP guidelines recommend a full blood screen upon presentation of such symptoms, and many GPs will order these tests. A blood test for coeliac disease will find out if the body is producing antibodies for coeliac disease, which is an indicator that the person has the condition.

If a blood test comes back positive for coeliac disease antibodies, further tests are required to confirm the disease is present. You are likely to be referred to a gastroenterologist, who specialises in gut health and gut conditions, and you may need to have a biopsy. This will usually give a confirmed diagnosis.

You may need to undergo further tests to find out if coeliac disease is affecting any other parts of the body, such as bone scans to check if osteoporosis may be an issue, or to find out if you are deficient in important nutrients such as B12, iron and folic acid.

It’s important to not cut out gluten from your diet until you have a confirmed diagnosis of coeliac disease, even if you feel that your symptoms are brought on by eating it, because this may affect your test results.

Types of coeliac disease

There are a couple of types of coeliac disease. Most people have a form of coeliac disease that responds well to a gluten-free diet and, by following a specialised diet plan, they are able to live relatively symptom-free. If symptoms do not respond to a true gluten-free diet (the person is not eating gluten mistakenly because it is hidden in certain foods) then this is called refractory coeliac disease. This is quite rare and usually affects older people who may have lived with the disease for a long time without knowing it or being diagnosed. For these people, the damage done to their gut by gluten is so extensive that now simply avoiding gluten is not enough to reduce their symptoms. There are some treatments for coeliac disease of this type, but it is generally likely to impact a person’s wellbeing and lifestyle more. Read more about other coeliac disease types.

Did you know... "Coeliac disease causes numerous symptoms, often digestion-related, such as diarrhoea, as well as dermatological, neurological and psychological symptoms."

Treatments for Coeliac Disease

Below, we explore coeliac disease treatments.

Coeliac disease symptoms can be managed in most cases, so that a person can live a healthy and rounded life. There is no cure for coeliac disease – once you have the condition, you have it for the rest of your life. This doesn’t mean to say that you have always had the condition, as it can develop at any age and people are not necessarily born with it. Coeliac disease cannot be treated with medications, although some people will need to take drug treatments and supplements. The main treatment for coeliac disease is to live completely without consuming gluten i.e. eating a true gluten-free diet.

Treatments

Gluten is found in wheat, barley and rye. Many other foods contain these ingredients, so gluten is present in a large amount of foods such as bread, cakes, biscuits, pasta, gravy, ready-made sauces and meals, and some confectionary. It’s important for someone living with coeliac disease to avoid gluten in these foods, as well as potential cross-contamination (e.g. in toasters, in restaurants, etc) where a gluten-food comes into contact with their food, or transfers to their food. Some people will react very quickly to consuming even trace amounts of gluten, whereas others may be able to tolerate this. A person living with coeliac disease will need to eat a gluten-free diet for life. Keep reading for more information on eating a gluten-free diet for coeliac disease.

Read more about treatments for coeliac disease.

Did you know... "Coeliac disease can develop at any age."

Living with Coeliac Disease

Here, we look at ways that coeliac disease affects daily life.

Coeliac disease affects daily life in lots of ways. It is a chronic, lifelong condition but, for most people, symptoms of coeliac disease will be managed through eating a gluten-free diet. Many people are able to have a normal quality of life, provided they avoid gluten. For other people who have a different type of coeliac disease, called refractory coeliac disease, the condition may have developed so far that it causes long-term problems which are not manageable with a gluten-free diet.

Introduction

Impact on daily living

Coeliac disease may affect daily life in the following ways:

Symptoms – coeliac disease symptoms are very challenging and can be painful. Symptoms are likely to affect daily life greatly before and during diagnosis. Lots of people who receive a coeliac disease diagnosis are able to follow a gluten-free diet which will eventually help reduce their symptoms and, after a little while, many find their symptoms completely disappear. The gut needs time to heal itself, and gluten takes a little time to be completely removed from the body. Many people are able to live symptom-free, but some will mistakenly eat gluten which can bring on symptoms once more. This is a constant risk for many who are living with the condition

Gluten-free diet – coeliac disease treatment is mainly based on eating a gluten-free diet and some people find this difficult to adjust to at first. Such a radical lifestyle change impacts upon daily life because a person will need to learn about what foods contain gluten, read the ingredients lists on pre-prepared foods, consider where to eat out without risk of gluten contamination, and may need to learn new ways of cooking – including new recipes. Eating a gluten-free diet for coeliac disease does not mean a person has to go without their favourite foods, but they may find that gluten-free food options cost more than their gluten-containing counterparts, so if a person chooses to eat these, they may see an increase in their shopping bill

Stigma and lack of awareness – some people with coeliac disease say that the lack of awareness about what their condition is, and how debilitating it is, causes stigma or misunderstanding, with some people being embarrassed to have to explain their condition (for example when in a restaurant or socialising around food)

Most people with coeliac disease are able to live their life in much the same way that those without the condition do, such as going to school, college, university, getting a job, having a family and so on. Read more about living with coeliac disease diagnosis.

Coeliac disease diet

Eating a gluten-free diet for coeliac disease is essential to managing the condition.

Continuing to eat gluten if a person has been given a coeliac disease diagnosis means that the damage to their gut will continue and symptoms are likely to remain. A gluten-free, coeliac disease diet should also be a healthy balanced diet, which ensures adequate nutrients and minerals are being consumed.

A gluten-free diet should, for obvious reasons, exclude all gluten. Gluten may be found in:

• Breads made of, or containing, wheat flour, barley, rye

• Pastries, cakes, biscuits, crackers and other baked goods

• Processed meats e.g. sausages, burgers – usually have wheat flour as a filler

• Some sweets and confectionary

• Some crisps and nut snacks

• Some ready meals, ready-made sauces, ready mix powder sachets, spice mixes

• Breakfast cereals e.g. Cheerios, Weetabix

• Most beers and ales

• Batters and seasonings

It’s important for someone with coeliac disease to check the ingredients on everything they buy and find out if it contains gluten. This can be time consuming but after a while, most people know what are safe foods or brands for them to use.

Specialists or a GP may recommend certain supplements for coeliac disease patients; for example, if they are deficient in iron or B12, a person may need to take these nutrients in supplement form in order to increase levels. If you are interested in taking coeliac disease supplements that have not been prescribed by your doctor, you should discuss this with your GP before starting a new regime.

Most people with coeliac disease will benefit from a referral to a dietician.

Read more about nutrition and diet for coeliac disease.

Exercise for coeliac disease

It’s important for people with coeliac disease to be physically active, as this will help the body repair itself. Gentle, regular exercise is the best, without excessive strain or force, which can hinder the gut healing process and put the body under a lot of physical stress. Coeliac disease exercise could include walking, running, yoga, swimming, etc. Regular exercise helps improve mood, reduce the risk of osteoporosis and improve joint and bone health.

Read more about exercise for coeliac disease.

Coeliac disease and employment

Living with coeliac disease diagnosis should not affect a person’s ability to work, at least when symptoms are under control. A person with the condition may need to consider their working environment to ensure they do not consume gluten, and find ways to eat gluten-free. For some people who have regular business lunches, work away from home, travel with work, etc, this can be more challenging but there are usually solutions to make life easier, such as taking their own food and calling ahead to ensure places can cater for them.

Did you know... "Coeliac disease causes damage to the villi in the small intestine, which leads to nutrient deficiencies."

Support for Coeliac Disease

Remember, you are not alone!

We hope this coeliac disease explanation has been useful to you, whether you are living with coeliac disease yourself or have a child or family member with a coeliac disease diagnosis. There is a growing awareness of this condition and eating a gluten-free diet is becoming easier, with many food options available to buy in supermarkets and eateries.

Having the disease obviously comes with challenges but, for most people, a gluten-free diet will help reduce symptoms or remove them completely. It can help to talk to others who have coeliac disease, and below, we provide some options for finding coeliac disease support.

Introduction

Communities

Coeliac Disease Facebook Support Group – a Facebook support group for anyone who has coeliac disease, to share experiences, ask for informal advice and talk about eating a gluten-free diet

Coeliac Disease Community – a forum for people to share their experiences of living with coeliac disease

Resources

Coeliac UK – the leading UK charity supporting people with coeliac disease and their families, with a wealth of information about the condition and how to live well with it, including information about eating a gluten-free diet, recipes, and the opportunity to become a member

Guts UK – a charity supporting people with digestive system conditions, with information about coeliac disease and research projects

NHS – source of official medical advice and information about coeliac disease symptoms, treatments and living with the condition

Did you know... "Eating a gluten-free diet for coeliac disease can mean that people live symptom-free."

Glossary

Unsure what something means? Checkout our Glossary section below

Although we always try to explain things as simply and as clearly as possible, sometimes it’s necessary to use the correct medical terminology. Medical terms are often known for being tricky to pronounce and if you’re not an expert in the subject, they can also be a little difficult to understand. Below, we’ve put together a list of terms used on this page along with a brief explanation of what they mean to help make your understanding of coeliac disease as straightforward as possible.

Introduction

Auto-immune

– conditions caused by the immune system attacking the body rather than defending it

Biopsy

– medical procedure that passes a tube through the mouth into the intestine to take samples that can be analysed to diagnose presence of disease such as coeliac disease

Gluten

– a protein in grains such as wheat, barley and rye

Small bowel

– otherwise known as the small intestine, between the stomach and large bowel

Villi

– small structures in the small intestine which make the surface area larger, allowing nutrients to be taken in more quickly


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