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Raising awareness together

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Working at Coeliac UK gives us the chance to properly connect with our Members.

Working at Coeliac UK gives us the chance to properly connect with our Members, who both support, and rely upon, the work of the charity. Through this connection, we have been able to build an understanding of what matters most to improve health and quality of life for people with coeliac disease. One of the biggest issues and clearest priorities is timely and accurate diagnosis.

Despite the research that goes into making these decisions, the human side of undiagnosed coeliac disease cannot be overlooked either. Take Phillipa, for example, who suffered with stomach pain, mouth ulcers, stunted growth and was extremely underweight for two years before finally being diagnosed with coeliac disease. She didn’t receive that diagnosis until testing that took place after being admitted to hospital for malnutrition, which is simply not acceptable. For somebody like Phillipa, having the tools available to tackle her condition, and the knowledge to understand the gluten-free diet is essential. And that’s not even mentioning that her diagnosis means she no longer suffers with constant stomach pains.

That’s why, for the second year in a row, we’re working flat out to get people the right diagnosis so that they can start getting to grips with their diet, and start to feel better. So, once again, we’re spreading the message that if you suffer from anaemia, frequent diarrhoea, nausea, mouth ulcers or a host of other symptoms, you need to ask yourself ‘Is it coeliac disease?’.

As is always the way with our fantastic Members, we have seen huge support behind our campaign to find the 500,000 people in the UK living undiagnosed with coeliac disease. People across the country have signed up to spread the word on our National Leafleting Day on Saturday 14 May, and we’re over the moon to have Marks & Spencer supporting the event as well. With our online Thunderclap campaign we reached over a million people and got #isitcoeliacdisease trending. We’ve got people getting creative with their symptoms selfies, using our specially designed selfie frames, and we’ve got individuals and local group hosting their own’ Is it coeliac disease?’ events across the country.

This year, everyone here at the Coeliac UK office is looking forward to spending time campaigning side by side with the Members and making a difference to the lives of people who are living with a condition they may never have heard of. Your support means a healthier and happier future for many people who will go on to become part of our wider community.

For more information on what we’ve done together visit us at www.coeliac.org.uk/awarenessweek, and play your part in raising awareness of coeliac disease and the gluten-free diet.

13 May 2016

In: Campaigns

2 comments on this post

savedbythearchers

Six months ago I left an abusive husband, and over the last six months, a lot of people have asked me, "So what finally made you leave?"

Basically, it was two things: listening to the story of Rob and Helen on the Archers (a story about emotional abuse and coercive control), and my diagnosis and subsequent treatment.

Prior to going gluten-free in early 2015, I suffered intense fatigue, bloating and stomach pain, and "mind fogs". My abuser told me I was just lazy, ate too much and had a mental disorder. Some days, I could barely drag myself out of bed, but who was going to care for our children, cook the dinner, clean the house, if I didn't? Any little thing could send me over the edge, and I found myself yelling at the children for the tiniest thing that made my work just that little bit harder, that little bit less easy to bear. "You can't even look after the children for half an hour without shouting at them," my abuser told me.

Going gluten-free took all that away, and left the constant put-downs empty of meaning. Lazy? I was up at 6.30am, cooked the children a hot breakfast, took them out scooting, and ran a music class, all before he was even out of his dressing gown. I ate too much? I was buying size 8 clothing for myself. I had a mental disorder? Said who? The guy who told me that speaking French to my five-year-old girl was bad for her language skills? The man who dealt with the children's fights by dragging the elder child upstairs, whereas all I needed to do was to get them involved helping me with housework?

Since leaving I have cared for the children alone, without any family support or even a very strong friendship network, having only lived in England a couple of years. I've been back and forth to court, set up a new apartment, dealt with terrified children and succeeded in calming their fears, and I've got myself a job. I couldn't have managed it before going gluten-free and ridding myself of those debilitating symptoms. I am so grateful to the doctor who, on my very first visit to her, ticked the box to test me for coeliac antibodies. I am so grateful to Coeliac UK for making life for those going gluten-free so much easier here than in many parts of the world.

I tell everybody I meet about Coeliac. It's good to hear that so many people have recently become much more aware of it. Given how common it is, and how common domestic abuse is, there must be many others like me who are constantly being told their symptoms either don't exist or are their own fault. I'm so glad that there are other voices making themselves heard, giving men and women the power of knowledge, the power to find out the truth and free themselves of two life-crushing burdens.

Thank you Coeliac UK, and thank you BBC Radio 4 for The Archers.

2 July 2016 08:03 PM

Vanessa

Attended a brilliant meeting with the South East Wales branch last Saturday and questions that I had regarding my diagnosis were answered. I have had a blood test that evidenced me having loads more antibodies than 'normal' in my blood stream. I now await seeing gastroenterologist to have full 'gold standard' diagnosis but for me it is very clear having been gluten free for just over two weeks now... I am NOT looking forward to the 'gluten challenge' but I will do it for the sakes of my family and future diagnosis! 80)

19 May 2016 01:23 PM

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