The chances of delivering a true step change in diagnosis rates of coeliac disease will be immeasurably increased with the support of our members, volunteers and other supporters.
Here you will find some inspiration for the ways in which you can support the campaign, resources to help make your activities a success and a way to tell us about your plans and share your achievements, including uploading your photos and videos.
We will also be announcing some activities organised by Coeliac UK for you to get involved in, further details of these activities will be provided at the end of the summer.
Why are you campaigning?
Coeliac disease affects around 1% of the UK population, yet only 30% of those with the condition have a medical diagnosis. This means that there is an estimated 500,000 people in the UK living with undiagnosed coeliac disease. Every day they could be eating a bowl of cereal at breakfast, a sandwich for lunch or plate of pasta for dinner and causing themselves damage, pain and suffering.
People with undiagnosed and untreated coeliac disease can have a wide range of reoccurring symptoms that can significantly affect their everyday lives. Undiagnosed coeliac disease can seriously impact quality of life, lead to regular absence from work and can carry long term health risks, such as osteoporosis and small bowel cancer.
When someone eventually receives a confirmed diagnosis, they are likely to be well into their 50s. It currently takes 13 years, on average, from when someone first experiences symptoms to diagnosis, and a quarter of those with coeliac disease were previously misdiagnosed with Irritable Bowel Syndrome (IBS).
We want to confirm a diagnosis for 250,000 more people by 2020, so that more people are freed from not knowing what is causing their symptoms, discomfort, pain and suffering.
What are our key messages and who are they aimed at?
We want to let people know that if they are experiencing any of the symptoms of coeliac disease then they should take our online assessment or visit their GP for a blood test for coeliac disease. Don’t forget that it can take an average of 13 years from when symptoms first develop until someone secures a medical diagnosis. The most commonly reported symptoms are:
frequent bouts of diarrhoea or loose stools
nausea, feeling sick and vomiting
stomach pain and cramping
lots of gas and bloating
feeling tired all the time, ongoing fatigue
anaemia (you would be told if you’re anaemic following a blood test)
weight loss (although not in all cases)
regular mouth ulcers
constipation or hard stools
skin rash (dermatitis herpetiformis, the skin manifestation of coeliac disease).
We also want people who have a first degree relative (parent, sibling or child) with coeliac disease, and who haven’t been tested before, to visit their GP for a blood test.
We want to encourage people who have been diagnosed with Irritable Bowel Syndrome (IBS), who have not been screened for coeliac disease before, to speak to their GP about getting a blood test for coeliac disease.
We’ve also asked that posters and leaflets be delivered to local dental practices. If you’re wondering why this is, it is because that another less common symptom of coeliac disease is the grooving and discolouration of dental enamel. Please highlight this if speaking to staff in dental practices.
We know that diagnosis rates for coeliac disease are lowest amongst younger adults and people from lower socioeconomic classes. Therefore, without excluding anyone who wants to know more, we particularly want to reach people who are aged 25-45 and who are from lower income households. Please also don’t forget that coeliac disease seems to affect women more than men at a 2:1 ratio.
There are still significant numbers of people who haven’t heard of coeliac disease or have a limited understanding of the condition. A 2015 YouGov poll of UK British adults found that 64% of people had heard of coeliac disease, but that only 26% felt very or fairly confident that they could explain coeliac disease to another person. Therefore, please remember to tell people that coeliac disease is an autoimmune condition linked to an intolerance to gluten, and currently the only treatment is a lifelong gluten free diet. It is important to stress that it is not a food allergy.
How can I support the campaign?
There are a number of things that you can do to support our campaign. Below are a few ideas that will help us to get our message out:
1. Distribute posters and information
We have prepared sets of posters and information leaflets that can be used to promote our campaign in local public spaces. A very helpful thing that supporters can do is to get these packs distributed locally for display.
To help us to educate people about coeliac disease and its symptoms, you can help by dropping off a Diagnosis Pack at your local pharmacy, dental surgery or library. You can order these packs by using the resource order form.
2. Hold an awareness raising and campaign stall
Stalls are a great way to reach people face to face. If you’re feeling ambitious a small local event might be for you. If you’re thinking of holding a stand, there are lots of ways that Coeliac UK could help, including materials for your stall and getting the message out. Use the forthcoming events form to tell us about your plans in advance and use the resource order form to gather all the materials you need.
3. Share our social media posts
By sharing Coeliac UK’s posts and images, you can play a huge part in spreading messages far and wide. If you share one of our posts, and encourage your friends to do the same, you’ll reach not only your friends but their friends too. The opportunities are endless.
4. Promote our campaign and online assessment
If you only have a short amount of time, and aren’t up for a great deal of organising then you might want to do some simple leafleting. You can do this by handing out information leaflets and/or symptoms cards in your local area. Busy high streets and public transport hubs are great places to do this kind of activity. Order your materials by filling in the resource order form.
You could theme your outfit by buying a Coeliac UK t shirt.
I’m a healthcare professional, what can I do?
Healthcare professionals are ideally positioned to make a big impact on improving diagnosis of coeliac disease. Here are a few things that healthcare professionals could do to support our campaign:
1. Screen IBS patients for coeliac disease
Around a quarter of those diagnosed with coeliac disease, had a previous diagnosis for Irritable Bowel Syndrome (IBS). We believe that targeting IBS patients is a good way to improve diagnosis. Healthcare professionals might want to consider a coeliac disease screening clinic for IBS patients.
2. Target information to those testing positive for anaemia
Because untreated coeliac disease limits the body’s ability to absorb nutrients from food, some of the symptoms are linked to nutritional deficiencies. A very common symptom of coeliac disease is anaemia. For these reasons, it would be very useful if all patients testing positive for anaemia were given a copy of our information leaflet on coeliac disease.
3. Put up posters and display information leaflets
If you work in a healthcare setting and you haven’t received a Diagnosis Pack with posters and information leaflets, you can order one using the resource order form. We would be extremely grateful if these materials could be displayed at patient information points.
4. Refresh your knowledge
We appreciate that it can be difficult to keep our knowledge fresh and at the forefront of minds. Therefore, if you think you could use an update or would like to refresh your knowledge of coeliac disease, you can do so on the healthcare professional resources page.
Can I just download and print materials at home?
Yes. We have produced a number of posters that can be downloaded and printed on A4 paper.
You can order all of the campaign materials for an event or activity, just complete our resource order form:
Tell us about any events you've got planned, including any ways in which we can help:
And don't forget to tell us how your event or activity went so we can share your success with others:
Please use this link, if you would like to make a donation to Coeliac UK.