Coeliac disease – all you need to know
Find out more about how coeliac disease is diagnosed and treated - and where to get support.
Coeliac disease is a lifelong autoimmune disease that is caused by a reaction to gluten. Around one in 100 people have coeliac disease, with many people not being diagnosed until their adult life .
When people with coeliac disease eat foods containing gluten, their immune system attacks tissues in the body, damaging the gut lining, which can hinder the absorption of many nutrients, such as iron and vitamin B12.
In this blog, we explain:
- What is gluten
- What are the symptoms of coeliac disease
- How is coeliac disease diagnosed
- How is coeliac disease treated
- Where to get support for coeliac disease
What is gluten?
Gluten is a naturally occurring protein found in wheat plants and other grains. Gluten is commonly found in most bread, pasta, and beer.
Gluten is present in :
- Oats (sometimes - due to cross-contamination)
Gluten is also added to many products to enhance the texture, flavour, and protein content. It is used as a binding agent in burgers and meat alternatives to hold them together and give them shape.
The body can never truly break down gluten, and this means that you are left with undigested gluten . Most people can handle undigested gluten, but in some people, it can cause unwanted symptoms or even trigger the autoimmune disease known as coeliac disease.
Gluten can affect people to varying degrees but having a gluten intolerance doesn't necessarily mean you will have coeliac disease. Some people have milder reactions to gluten which, unlike coeliac disease, doesn't damage the gut lining. These conditions may be termed gluten sensitivity and gluten intolerance, which can cause unwanted symptoms. Neither of these terms is clearly defined by the medical community, but (generally) gluten sensitivity is milder than intolerance.
What are the symptoms of coeliac disease?
People with coeliac disease can have a range of symptoms which are not always gut-related.
General symptoms of coeliac disease:
- Fatigue (because of malnutrition)
- Unintentional weight loss
- Itchy rash
Gut symptoms associated with coeliac disease:
- Stomach aches
Coeliac disease increases your risk of developing:
- Another autoimmune disease such as a thyroid condition
- A gut-related intolerance such as lactose intolerance 
- Iron deficiency anaemia
- Vitamin B12 and folate deficiency anaemia
How is coeliac disease diagnosed?
Coeliac disease is initially screened for via a blood test that looks for specific antibodies, i.e. IgA tissue transglutaminase antibody (tTG).
Some people with coeliac disease have a general IgA deficiency. If this is the case, your tTG IgA result may be falsely negative. For this reason, your healthcare provider will often measure total IgA and tTG IgA together.
To be referred for this blood test, you will need to be experiencing at least one of the symptoms listed on the NHS website. You may also be offered a blood test if one of your parents, siblings, or children has coeliac disease.
Before your blood test, you need to have been eating foods containing gluten for a minimum of six weeks. Your blood test results will measure antibodies that are more common in people with coeliac.
If the results are positive, then you may be referred for a biopsy of your intestine. But not always.
Since the COVID-19 pandemic, new guidelines have been published that recommend adults with extremely high antibody levels to have a further blood test to confirm the diagnosis. That’s without the need for a biopsy .
It's possible to have a negative blood test result but still have coeliac disease, known as a false negative result. Often this is due to two reasons:
- Reduced gluten intake around the time of your test — this can cause an inaccurate result. If you've removed gluten from your diet before your test, you will need to reintroduce it before being retested.
- IgA deficiency — around one in 200 people have an immunoglobulin A (IgA) deficiency which can cause a normal blood test result even in the presence of coeliac disease. You should discuss this possibility with your GP if your results are normal, but you still have symptoms of coeliac disease.
Is there a blood test for gluten intolerance?
Gluten intolerance is not typically identified by a blood test, instead; a process of ruling out other triggers is followed to ensure symptoms are not being caused by anything else. Following an elimination diet is key to identifying a gluten intolerance, this can help to further pinpoint trigger foods or ingredients that may lead to identifying a gluten intolerance.
How is coeliac disease treated?
The primary treatment for coeliac disease is a gluten-free diet. You will need to be on a gluten-free diet for the rest of your life to prevent any unwanted complications, such as malnutrition or deficiencies.
Being gluten-free also means you will need to avoid foods that have ‘may contain’ on the label, as the risk of cross-contamination is high for people with coeliac disease.
It may seem overwhelming at first but once you get into the swing of things, a gluten-free diet is manageable.
How to manage a gluten-free diet
1. Plan meals in advance
Planning meals (including when going out for meals) can help you be prepared and ensure you don’t slip up. Knowing what you are going to eat each day can also take the stress out of day-to-day life. You know you don’t have to worry about whether you can eat that night’s meal or not.
2. Cook from scratch
Cooking from scratch may not be everyone’s cup of tea, but it can take the stress out of worrying about whether you can eat a particular ready meal or not. Many supermarkets now have gluten-free versions of things such as pasta and flour, which can mean you can continue to eat your favourite meals – just with simple substitutes.
You can also batch-cook meals. If you’re busy and are not able to cook from scratch every night, try setting out a block of time to prepare a few meals and freeze them.
3. Create a cupboard solely for gluten-free items
If you are the kind of person who likes to grab and go, having a cupboard solely dedicated to gluten-free snacks and foods makes things easier. This is especially useful if you have children as it means they can go to their designated cupboard knowing they can have anything in there. This helps to focus on things that you can have, rather than looking in a cupboard and reminding yourself of the things you can’t have.
4. Get inspiration
Having a look at platforms such as Instagram and Pinterest can help give you inspiration for different meals.
Gluten-free influencers on Instagram include:
5. Test yourself
Getting regular blood tests can help you to check on your inner health, such as whether you are deficient in any nutrients, or are at risk of any other health conditions.
Where can I get support for coeliac disease?
It is important to remember that you are not alone. And though it may seem overwhelming, there are some great online resources and charities there to help.
- Glutafin is a great website that has plenty of information, recipes, and stories of people living with coeliac disease. They also are the manufacturers of the gluten-free brand, Schär, whose products can be found in most supermarkets.
- Coeliac UK is a charity that has over 50 years of experience helping people with coeliac disease and has plenty of information and resources to help you along your coeliac journey.
- Coeliac UK. 2022. Coeliac disease. [online] Available at: <https://www.coeliac.org.uk/information-and-support/coeliac-disease/?&&type=rfst&set=true#cookie-widget> [Accessed 6 July 2022].
- Hopkinsmedicine.org. 2022. What Is Gluten and What Does It Do? [online] Available at: <https://www.hopkinsmedicine.org/health/wellness-and-prevention/what-is-gluten-and-what-does-it-do> [Accessed 6 July 2022].
- nhs. uk. 2022. Coeliac disease - Complications. [online] Available at: <https://www.nhs.uk/conditions/coeliac-disease/complications/> [Accessed 6 July 2022].
- Coeliac UK. 2022. Getting diagnosed - How to start your journey to a healthier life. [online] Available at: <https://www.coeliac.org.uk/information-and-support/coeliac-disease/getting-diagnosed/?&&type=rfst&set=true#cookie-widget> [Accessed 7 July 2022].
- Tools and resources: Coeliac disease: Recognition, Assessment and Management: Guidance (no date) NICE. Available at: https://www.nice.org.uk/guidance/ng20/resources (Accessed: November 2, 2022).