Coeliac disease: Why we’re busting myths this awareness month

Coeliac disease is a topic that gets talked about a lot, but unfortunately, much of what we hear isn’t actually true. This Coeliac Disease Awareness Month, we’re on a mission to set the record straight.

For the half a million people in the UK currently living with undiagnosed coeliac disease, myths can be more than irritating. They can be a barrier to getting the right medical help and diagnosis. Currently, there is no cure for coeliac disease, so whether you are struggling with unexplained digestive symptoms or supporting a loved one, understanding the reality of this condition is vital for long-term health.

Let’s clear up the confusion by looking at some of the most common myths versus the medical facts…

Myth: “It’s just a food allergy.”

Coeliac disease isn’t a food allergy or intolerance, it’s an autoimmune disease. When someone with the condition eats gluten, the body attacks its own cells, damaging the small bowel lining.

Fact: It is not an allergy, nor a food intolerance.

Myth: “A little bit of gluten is fine.”

There is no such thing as a little bit when it comes to coeliac disease. Even trace amounts of gluten, like crumbs, can trigger an immune reaction and cause internal damage.

Fact: It’s a lifelong medical condition and the only treatment is a strict, lifelong gluten-free diet.

Myth: “It’s just a tummy ache.”

While many people experience digestive symptoms, coeliac disease is much more than a tummy ache. The internal damage can lead to malabsorption, meaning the body struggles to get the vital nutrients it needs from food.

Fact: It can affect the entire body.

Symptoms aren’t always digestive. It can cause fatigue, mouth ulcers, a skin condition associated with coeliac disease called dermatitis herpetiformis, and even neurological symptoms like headaches and brain fogs.

Myth: “Just avoid bread and pasta.”

Gluten is a protein found in wheat, barley, and rye, and it can be hidden in sauces, seasonings, processed meats and even some drinks like beer.

Fact: Damage happens even without symptoms. Eating any type of gluten isn’t an option.

Some people have “silent” coeliac disease, where they don’t feel sick after eating gluten. However, the internal damage to the gut lining still occurs. A strict diet is necessary even if you feel fine.

Myth: “You have to be underweight to have it.”

You cannot tell if someone has coeliac disease just by looking at them.

Fact: People of any weight or body type can have the condition.

Understanding coeliac disease helps us support those living with it and ensures people get the right diagnosis. If you’re worried about your symptoms, always speak to a healthcare professional before changing your diet.

Taking control of your digestive health

If any of the facts above resonated with you, or you’ve been experiencing persistent, unexplained digestive symptoms, don’t ignore them. Speak to a healthcare professional such as your GP. Your symptoms are valid, and you deserve answers.

Our information on coeliac disease tells you more about the causes, diagnosis, symptoms and treatment. It also includes information on questions you may want to ask your doctor.

Important note: Do not remove gluten from your diet until you have been fully tested for coeliac disease, as this can lead to a false negative result.

Finding the right support

At Guts UK, we’re here to ensure that nobody suffers in silence or alone. Our Helpline team can provide information, guidance and support.

For further support and resources you can trust, we recommend checking out our friends at Coeliac UK. Coeliac UK is the leading UK charity supporting people diagnosed with coeliac disease.

Together, we’re getting to grips with guts.