Coeliac Disease Awareness Month

May marks Coeliac Disease Awareness Month.

At Guts UK charity, we raise vital awareness for coeliac disease, provide expert, patient information to those who need it most, when they need it most and fund research into this digestive condition.

What is coeliac disease?

Coeliac disease is not an allergy or intolerance. Individuals who have coeliac disease can have an adverse response to gluten when they eat it. Damage to the lining of the small bowel is caused by gluten because the body ends up attacking its cells. This is what makes coeliac disease an autoimmune condition.

What are the usual symptoms?

Coeliac disease symptoms include:

• Abdominal pain and bloating
• Diarrhoea or constipation
• Feeling tired all the time
• Unexplained weight loss
• Persistent mouth ulcers

More information on the symptoms of coeliac disease can be found in our coeliac disease information via the link at the bottom of this page.

Who does coeliac disease affect?

More females assigned at birth tend to be diagnosed than those designated male at birth. The average age of diagnosis is between 40 and 60 years old, but people can be diagnosed at any age once gluten is introduced in the diet.

Genetics play an important role in the development of coeliac disease. Being a first-degree relative of someone with coeliac disease increases the risk of developing the condition. To develop coeliac disease, a person must have a mutation of the HLA-DQ gene. About 4 in 10 of the general population carry them. However, not everyone with the mutation will develop coeliac disease, and many environmental factors can trigger the development of the condition in genetically predisposed individuals.

How common is coeliac disease?

Studies show that approximately 1 in 100 people in the UK have coeliac disease. However, it is thought that nearly 7 out of 10 people remain undiagnosed. This means about half a million people are living with coeliac disease. unknowingly.

Mia’s coeliac disease story

I received a diagnosis of irritable bowel syndrome (IBS), then had tests for coeliac disease and inflammatory bowel disease (IBD). Blood tests showed I was positive for having coeliac disease, then the wait began for an endoscopy (camera test down my throat). In two months, I lost three stone. My bowel was so damaged that I’d bleed when going to the toilet to empty my bowels. A diagnosis of coeliac disease was later confirmed.

Read Mia’s story here.

Imogen’s coeliac disease story

Imogen’s coeliac disease story is shared by her mum, Kerry:

I had never heard of coeliac disease before the consultant mentioned it. I searched on Google for it straight away. I’d always thought gluten-free diets were just “fad” diets, and I had no idea they were connected to an autoimmune disease. I cried when I realised the challenges that lay ahead: the unknown, the changes we’d have to make, and the future Imogen would have to navigate with this condition.

Read Imogen’s story here.

To read more stories from people affected by coeliac disease, visit the stories section of our website.

Where can I find more information on coeliac disease?

Our accredited information on digestive conditions and symptoms includes coeliac disease. Our Helpline team can also provide information, guidance and support.

Coeliac UK is the leading UK charity supporting people diagnosed with coeliac disease.

Why is awareness of coeliac disease so vital?

Raising public awareness of coeliac disease is crucial. Through raising public awareness, people can feel empowered to know their normal and know when to seek help. People can learn more about coeliac disease and get to grips with their guts.

How can I help?

You can help us raise awareness of coeliac disease by:

• Following us on social media and sharing our awareness and information posts during the month itself. You never know who we might reach and help together. Find us on Facebook, LinkedIn and Instagram.
• Share an experience with coeliac disease with your own circles and on your own social media channels. You can register your interest to share a story with us here.
• Fundraise for Guts UK Charity to help us abolish the taboos surrounding digestive health, and get to grips with guts. You can fund life-changing research, and empower people to seek help sooner.