This piece was written in partnership between Dr Hazel Wallace and Specialist Gastroenterology Dietitian – Cristian Costas.
What is it?
Coeliac Disease is life-long, multi-system autoimmune disorder where the body attacks itself when even a tiny amount of gluten is eaten.
For those with coeliac disease, gluten causes physical gut damage at the height of the small intestine, which can lead to vitamin and mineral deficiencies and complications such as; infertility, osteoporosis and small bowel cancer (in a small proportion of patients) if untreated or undiagnosed.
Who does it affect?
In the UK Coeliac Disease affects 1% of people (1 in 100)
There is a strong genetic predisposition, so if you have a first degree relative with coeliac disease, you have a 10% chance of having it too
It can affect people at any point in their life. In the UK more than 50% of people get diagnosed between the age of 40-60.
More females than males are diagnosed with coeliac disease in the UK
What are the symptoms?
Coeliac Disease affects multiple systems in the body, not just the digestive system.
Image source: Lindfors K, Ciacci C, Kurppa K, Lundin K, Makharia G, Mearin M et al. Coeliac disease. Nature Reviews Disease Primers. 2019;5(1)
Main Digestive symptoms:
- Abdominal pain
Main non-digestive symptoms:
- Mouth ulcers
- Dermatitis Herpetiformis (skin rashes)
- Headaches and brain fog
- Peripheral neuropathy (loss of sensation of fingers and toes)
- Weight loss (stunted growth in children)
- Chronic fatigue
- Vitamin and mineral deficiencies
Important to remeber that around 20% of people have no symptoms at all.
How is it diagnosed?
Since June 2020 the diagnostic criteria has changed in the UK so that now a diagnosis can be made in children and adults <55 years through coeliac antibody blood tests, without the need for an endoscopy test, if the blood test values are high enough.
For adults > 55 years, or people < 55 years where antibody blood tests are abnormal but not elevated enough, they may need an endoscopy to take a biopsy from the small intestine to confirm the diagnosis (1).
Ps. The antibody blood test must be done whilst still eating gluten containing foods
What is the treatment?
Unfortunately there is no cure.
The only available treatment is a lifelong gluten-free diet. Gluten is a protein that can be found in wheat, barley, rye. Technically oats don’t have gluten but can be contaminated so always choose gluten free oats, but some people are still not able tolerate oats at all due to a similar protein called avenin.
For people with coeliac disease, less than a crumb of gluten can damage the gut and cause symptoms and this is why cross-contamination (i.e. when gluten comes into contact with gluten free food in the cooking process) also needs to be avoided.
Who should be tested for Coeliac Disease?
- If you have any symptoms that are unresolved that have been mentioned it is worth discussing this with your GP
- If you have first degree family members with coeliac disease
- If you have unexplained anaemia or vitamin and mineral deficiencies
- If you have other autoimmune conditions like Type 1 diabetes or Autoimmune Thyroid Disease
- If you want to find out if you need to get tested or not you can take a free test: https://isitcoeliacdisease.org.uk/
Key take-home messages
Coeliac disease is a serious condition that can cause physical gut damage, symptoms and complications if not diagnosed and treated properly.
The symptoms do not just have to be digestive and they do not need to be severe.
In the UK, an estimated 75% of people with coeliac disease (500,000 people) remain undiagnosed and do not know they have it. It takes on average 13 years to get diagnosed with coeliac disease in the UK. You can reduce this average by learning the signs and symptoms and helping to raise awareness of the condition.
Online test to check if you need to get tested for coeliac disease: https://isitcoeliacdisease.org.uk/
Coeliac UK website: https://www.coeliac.org.uk/home
Coeliac UK Gluten Free Food Checker app to find gluten free products by searching them and and scanning barcodes (you need to be a member of Coeliac UK to use it)
Coeliac UK Gluten Free On The Move app to find restaurants that provide gluten free food around the UK (you need to be a member of Coeliac UK to use it)
Webinars and information about coeliac disease and the gluten free diet explained by dietitian’s: https://patientwebinars.co.uk/condition/coeliac-disease/
(1) Adults (2020): https://www.bsg.org.uk/covid-19-advice/covid-19-specific-non-biopsy-protocol-guidance-for-those-with-suspected-coeliac-disease/ Children (2019): https://www.espghan.org/knowledge-center/publications/Gastroenterology/2019_ESPGHAN_guidelines_for_diagnosing_coeliac_disease