Below we hear from the national charity, Coeliac UK and local patient, Magdalena, who lives with the disease.
I’m Magdalena and I have been diagnosed with coeliac disease for three years.
Coeliac disease is one of those tricky-to-diagnose conditions, which is often misdiagnosed as Irritable Bowel Syndrome (IBS). Symptoms differ from person-to-person, with individual levels of severity. So, if you are struggling with a combination of these symptoms: anaemia, nausea, vomiting, unexpected weight loss, bloating, folic acid deficiency, constipation, mouth ulcers, frequent diarrhoea, and skin rashes; this blog may be of use to you.
So what exactly is coeliac disease? It is an autoimmune disease, where our body produces antibodies when a protein called gluten is detected in our gut. This reaction causes damage of the gut lining, affecting absorption of nutrients and in a long run can lead to severe malnutrition, osteoporosis, or in a very small number of people, bowel cancer.
Sounds scary, but it does not have to be. As someone with the illness, and after years of suffering from fatigue and migraines, I recognise that awareness is the key to enable self-control and self-care.
With 1 in 100 people affected, and only 24% of sufferers diagnosed so far, we need to be aware of our bodies and be able to recognise symptoms and triggers in our diet. We need to know what the next step would be for us to address our concerns.
Research indicates that 40% of population has a gene that is responsible for developing coeliac disease, however not everyone with that gene suffers with the condition. It can be triggered at any stage of life by events such as illness, severe trauma, pregnancy or stress.
There is a higher risk of developing disease if it already runs in families; therefore it is important to have awareness of it and to visit your GP to discuss your concerns. Your doctor will take blood samples to look for specific antibodies and will arrange an appointment with a gastroenterologist, if the results of your blood test are positive. A biopsy of your gut lining will be taken in endoscopy to confirm diagnosis.
If you feel you may suffer from coeliac disease, support is available to give you the answers you need. Coeliac UK is a charity that works endlessly to find potential cures through ongoing research, campaigning for better access to diagnosis and care.
The charity has introduced a very efficient self-assessment tool, which you can find here.
The assessment changed my life through getting quick diagnosis and setting me on the road to recovery.
It is important not to cut gluten of your diet during the investigations and to continue to eat some gluten containing foods (e.g. bread, pasta, cereal, crackers) until confirmation of diagnosis.
Once diagnosed, it is a diet for life. As a lifelong condition, coeliac disease can be only managed with a gluten free diet, as it is the only available treatment so far.
What happens after diagnosis? Do not worry you will be on your own. There is plenty of support with gastroenterology and dietetic appointments and access to local support groups, plus plenty of resources from Coeliac UK which celebrates its 50th anniversary this year.
Stay happy, stay healthy, stay informed.
Coeliac UK is the national charity supporting people with coeliac disease and gluten related conditions, and provides expert advice and support on living gluten free.
In addition to the more common gut related symptoms of coeliac disease, Coeliac UK is urging health professionals and the general public to take coeliac disease seriously and realise that as it is a systemic disease it can affect other parts of the body. Earlier diagnosis is essential as it still takes an astonishing 13 years on average for a person to be diagnosed and there are still around half a million people in the UK undiagnosed. The charity’s awareness week campaign will be highlighting the unseen symptoms and other emerging forms of the disease such as neurological impacts.This year the charity is celebrating its 50th Anniversary and has launched a research fund and accompanying fundraising appeal, aiming to raise £5 million to change the future for people with coeliac disease and gluten related autoimmune conditions. You can find more information and to watch the fundraising appeal video here.
More information, please visit the website or call the helpline: 0333 332 2033.