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. Gluten is a protein found in wheat, barley and rye. Gluten itself is harmless and the majority of us can eat it without any issues. However, in about 1-in-100 people, gluten triggers the immune system to attack the lining of the small bowel causing inflammation.

It’s this inflammation that causes the coeliac disease symptoms. Let’s go through the common and less common coeliac symptoms.

About two thirds of people with coeliac disease have symptoms¹. These are the commonest coeliac disease symptoms:

Even though two thirds of people with coeliac disease have symptoms, a third of people with coeliac disease have no symptoms¹. 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.

Coeliac disease is common and affects a little over 1-in-100 people in the UK. Coeliac disease can affect you at any age and actually the commonest age to be diagnosed is between your 30s and 50s. 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.

Even if you do have coeliac disease symptoms, trying to figure out if coeliac disease is the cause by monitoring your gluten intake and making a symptom diary is a very unreliable way to diagnose the condition. Firstly, wheat, barley and rye contain substances other than gluten (such as FODMAPS) which cause gut symptoms. Secondly, you could have non-coeliac gluten sensitivity meaning that you have coeliac symptoms but don’t have coeliac disease.

The first step to figuring out if you have coeliac disease is to take a simple blood test to look for specific antibodies that are raised in coeliac disease 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. There are a few nuances to coeliac disease testing and we go into lots of detail in our dedicated article on testing for coeliac disease.

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.