10 things you need to know about coeliac disease

Given that coeliac disease affects one in 100 people living in the UK, and that it takes, on average, 13 years to be diagnosed, it’s incredibly important to raise awareness of this autoimmune disease to ensure the many people who could be living with the illness without even realising it, can get the help they need...

1. It’s not an allergy

We often talk about coeliac disease in the context of allergies, but it isn’t actually an allergy; it’s an autoimmune disease. When an individual eats gluten, their immune system attacks the tissues of the small intestines, resulting in symptoms such as pain, vomiting, and diarrhoea. Unlike an intolerance, it’s not just about symptoms: eating gluten can cause the villi lining your small intestines to become physically damaged, which can prevent your body from absorbing vitamins and cause malnutrition.

2. It’s a lifelong condition

Coeliac disease cannot be cured or be grown out of – it is a lifelong condition. Fortunately, the vast majority of people feel well when they follow the treatment, which is to avoid gluten at all costs. Some people who have coeliac disease may find that they don’t have immediate symptoms when eating gluten, but that doesn’t mean they’re no longer a coeliac; the damage to your small intestines will still be occurring in absence of physical symptoms.

3. It doesn’t just affect your digestion

Another common misconception is that it only causes digestive issues. Although these are more prevalent, some people may have mild digestive symptoms and instead notice other symptoms more. One of these is dermatitis herpetiformis – a painful, itchy, blister-like skin rash that appears in individuals, some of whom don’t have any digestive symptoms. Other manifestations include fatigue, mouth ulcers, and low iron or B12.

4. Gluten is in far more foods than bread

Whenever we talk about gluten, we usually focus on bread, but going gluten-free is actually much more complicated than that. Gluten is lurking in lots of everyday foods, such as couscous, gravy mixes, soy sauce, and even cooked meats, to name but a few. That’s why checking food labels is so important for those with coeliac disease. By law, food labels should clearly mark the allergens each item contains.

5. You need to keep eating gluten to be tested for it

Many people opt to give up gluten if they suspect they have a problem digesting it, but this can cause problems when they try to get a diagnosis. According to Coeliac UK, the first step is a blood test to check for antibodies that the body makes in response to eating gluten. It’s important not to cut out gluten before testing, because otherwise you could receive a false negative.

If a blood test is positive, some people with suspected coeliac disease will also be referred for an endoscopy to confirm the diagnosis and, again, it’s really important not to change your diet ahead of this so your doctors can visualise the damage gluten may have caused.

6. It can run in families

Coeliac disease is genetic, which means that if someone in your family has the condition, you have a 10% chance of also developing it. If you are struggling with digestion symptoms, and have someone in your family who has coeliac disease, it’s really important that you speak to your GP about getting tested as soon as you can. The good news is that just because you have coeliac disease doesn’t necessarily mean you’ll pass it on to your child – there’s still a 90% chance they won’t get the condition.

"Coeliac disease is genetic, which means that if someone in your family has the condition, you have a 10% chance of also developing it"

7. Many people are misdiagnosed with IBS

Coeliac UK estimates that around one in four people who have the condition were previously diagnosed with irritable bowel syndrome (IBS). If your doctor suspects you have IBS, they should always rule out coeliac disease by doing a blood test (along with testing you for other digestive conditions) before diagnosing you with it.

However it is worth noting that coeliac disease and IBS can equally exist alongside each other, too; if you have coeliac disease, you’re up to four times more likely to have IBS.

8. Giving up gluten doesn’t make you instantly better

The only treatment for coeliac disease is to follow a gluten-free diet rigidly for the rest of your life, but recovery can take some time. Lots of people notice a huge improvement within weeks, but it can take up to two years for your small intestines to fully recover. Those who struggle with the skin rash, dermatitis herpetiformis, may find that their gut symptoms improve quicker than their skin condition, so some patients are prescribed treatment to help the rash in the short-term.

9. People with coeliac disease are at more risk of developing another autoimmune disease

Like most autoimmune diseases, if you have one, you’re more at risk of developing another further down the line. For example, 4–9% of people with type 1 diabetes also have coeliac disease, and those with psoriasis are thought to be three times as likely to be diagnosed with coeliac disease, according to a study published in the Indian Journal of Dermatology. This is why getting a proper diagnosis is so important to ensure coeliac patients are aware of these other potential health concerns.

10. Coeliac disease can impact your mental health

A review of multiple studies, published in the United European Gastroenterol Journal, found that coeliac disease had a “considerable psychological impact”, and levels of anxiety and depression are higher in those who have coeliac disease. The good news is it’s shown that anxiety does decrease after a diagnosis.

If you recognise any of the symptoms we’ve mentioned, it really is important to speak with your GP. Living with coeliac disease is manageable, and it’s certainly possible to lead a full life without gluten in it!

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To connect with a nutritionist to discuss your diet, visit nutritionist-resource.org.uk