What is coeliac disease and do I have it?

You’ve probably heard of coeliac disease and know that it’s something to do with gluten but do you know what the common coeliac disease symptoms are? How about “silent coeliac disease”, ever heard of that? Do you know how to diagnose coeliac disease? Not to worry, let’s dive into coeliac symptoms and what to do if you have them.

First things first, what is coeliac disease?

Coeliac disease is an autoimmune condition. This is where something triggers your body to mount an immune response against itself. In the case of coeliac disease, gluten is the trigger. It’s this inflammation that causes the coeliac disease symptoms, so let’s go through some of the coeliac symptoms.

• Diarrhoea. This is the commonest coeliac disease symptom and affects a little over half of individuals¹.
• Weight loss. Unintentional weight loss is common with coeliac disease, affecting about 1-in-3 individuals, However, this doesn’t affect everyone and about 1-in-5 people with coeliac disease are actually overweight.
• Stomach pain. This tends to be in the upper stomach and affects around 1-in-3 people with coeliac disease.
• Bloating and flatulence. Again, around 1-in-3 people with coeliac disease complain of bloating.
• Fatty, floating stools. This affects about 1-in-4 people with coeliac disease.
• Tiredness. Coeliac disease can cause deficiencies in iron, vitamin B12 and folate - all of which can result in tiredness.

Even though two thirds of people with coeliac disease have symptoms, a third of people with coeliac disease have no symptoms². This is called “silent coeliac disease”. So if you don’t have symptoms, how can silent coeliac affect you?

Silent coeliac disease can be tricky to pick up because, by definition, you have none of the common coeliac symptoms. However, there are often more subtle signs that can indicate coeliac disease.

• Anaemia. Coeliac disease affects iron absorption and it’s not uncommon for iron deficiency anaemia to be the only sign of a problem in people with coeliac disease.
• Low bone density. Coeliac disease affects the absorption of vitamin D and calcium, both of which are crucial for bone health.
• Tingling and numbness. Coeliac disease can damage nerve fibres causing abnormalities in sensation or pins and needles. This mainly affects the arms and legs.
• Infertility. Many women with coeliac disease have a history of infertility. In a study of women being investigated for infertility, 3% were found to have coeliac disease³.
• Skin rash. About 1-in-10 people with coeliac disease get an itchy, bumpy skin rash called dermatitis herpetiformis.

Coeliac disease is common and affects a little over 1-in-100 people in the UK. We're not 100% sure what actually causes coeliac disease. We know that it's related to your genes but there are almost certainly environmental factors - e.g. diet or infections - that are important too.

Coeliac disease can affect you at any age and actually the commonest age to be diagnosed is between your 40s and 60s. Coeliac disease affects both sexes but women are more likely to be diagnosed with coeliac disease than men. You’re more likely to have coeliac disease if someone else in your family has it³.

You might be wondering, “do I have coeliac disease?”. After all, 1-in-3 people with coeliac disease have “silent coeliac” and so don’t even have any symptoms. Those who do have coeliac symptoms mostly struggle with diarrhoea, stomach pain and bloating. Sound familiar? That’s because irritable bowel syndrome (IBS) causes exactly the same symptoms. In fact, 36% of people with coeliac disease have been misdiagnosed with IBS before their coeliac diagnosis⁴.

Because coeliac disease symptoms are non-specific and because many people with coeliac disease have no symptoms at all, 3 out of every 4 people with coeliac disease don’t even know they have it⁵! Furthermore, it takes the average person over 10 years from having coeliac symptoms to get a diagnosis of coeliac disease!

The bottom line is that if you want to know if you have coeliac disease, you need to take a coeliac disease blood test and you need to take one sooner rather than later.

You can't figure out if you have coeliac disease from symptoms. 30% of people don't get coeliac symptoms anyway and even for those that do get symptoms, there's a lot of overlap with other gut conditions such as non-coeliac gluten sensitivity and IBS.

If you want to know if you have coeliac disease, you need to take a coeliac disease blood test.

• Order our Coeliac Disease Blood Test
• Collect your blood sample using a finger kit collection kit or have blood draw in one of our clinics
• Send your sample off to our NHS-testing lab
• Receive your result and report from one of doctors in a few days.

To test for coeliac disease we need to look for some antibodies in your blood called anti-tissue transglutaminase IgA antibodies. If this blood test is negative and you’ve had gluten in your diet in the weeks before testing, you can be confident that you don’t have coeliac disease. On the other hand, if your antibody level is raised, it’s very likely that you have coeliac disease. If you'd like to know more about testing for coeliac disease, check out our in-depth article.

If you do have coeliac disease, the main treatment is to go on a gluten-free diet. This means cutting out any foods containing wheat, barley or rye. This includes bread, pasta, cakes and even beer.

Although a gluten-free diet is certainly not easy to stick to, supermarkets do have many gluten-free alternatives than they used to. You’ll often find gluten free options when you’re eating out too. The good news is that following a gluten-free diet will allow your gut to heal completely and you should have no symptoms or complications from coeliac disease.

I'm an expert gut doctor with years of experience working as a surgeon, doctor and microbiome scientist in the NHS. Millions of people don't even know they coeliac disease and it takes far too long for people to get a diagnosis. I use my expertise to give people easy access to coeliac disease testing along with the support to understand their coeliac disease blood test results and know what to do next.

Dr Alasdair Scott FRCS PhD

Gut Doctor

Taking a coeliac disease blood test is the first step to finding out if you have coeliac disease or not.

Dr Alasdair Scott FRCS PhD

Gut Doctor