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Help change lives with our Research Fund

Why research is needed now

For the 1 in 100 people affected by coeliac disease, it can be hard to appreciate the impact coeliac disease can have on their lives.

For many, it can be years of suffering before eventual diagnosis. For others, it can be ongoing health impacts long after diagnosis, whether due to neurological conditions or related autoimmune conditions. And for those diagnosed with refractory coeliac disease type II, they are at an increased risk of certain types of gut cancer.

Sadly, little has changed since the discovery of the link between coeliac disease and gluten over 60 years ago. Today, sticking to a gluten free diet is still the only treatment – but it doesn’t work for everyone. And as more disturbing new aspects of the disease emerge, it’s becoming critical to find answers through research.

We need to do something. Find a more permanent solution to a growing problem. But without research and understanding, the real problem – coeliac disease – isn’t going away anytime soon.

£5 million could be life changing

£5 million would allow us to focus on the priorities that our community and healthcare professionals believe give us the best chance of developing life changing solutions for those living with coeliac disease.

You can change the future for people living with coeliac disease and gluten related conditions. Do something. Donate to our Research Fund today.

More on their stories:

Twins

Twins Phoebe and Ruby, 11

Different symptoms

Twins Phoebe and Ruby, were diagnosed at separate times and the initial symptoms for each of them were very different. Phoebe had reflux and severe constipation whilst Ruby who was diagnosed later had skin rash and tummy issues. They have also been diagnosed with an autoimmune thyroid condition.

Maureen

Maureen, 79

Neurological issues and osteoporosis

It took 40 years for Maureen to be diagnosed with coeliac disease. As a result, she is now a wheelchair user due to osteoporosis and neurological issues affecting her balance.

Kerry

Kerry, 39

Gluten ataxia changed her life

Kerry’s life has never been the same since the debilitating symptoms of gluten ataxia, as a result of suffering from coeliac disease, took hold and changed the course of her future. The ataxia causes speech difficulties and means that Kerry has no control over the right side of her body. The former fitness fanatic had to give up her career plans to be a massage therapist and for others like her, the gluten free diet is not enough to help her manage her condition. 

Charlotte

Charlotte, 29

Misdiagnosed with IBS

Charlotte struggled for years with misdiagnosed irritable bowel syndrome before finally being diagnosed with coeliac disease, but only after losing so much weight she went down four dress sizes. While she’s now put on weight, her dermatitis herpetiformis has not cleared yet. But it’s the struggle of managing a gluten free diet, especially on a limited budget, which makes it all the more challenging for this young mum of two, and makes her wish for a better future.

John

John, 66

Refractory type II sufferer

John suffered from undiagnosed coeliac disease for 50 years before being diagnosed with refractory coeliac disease type II. He continues to suffer from pain as critically, type II does not respond to the gluten free diet and devastatingly, the long term prognosis for those diagnosed with the condition is not good, with less than 50% surviving beyond five years.

Pam

Pam, 61

Neurological impacts caused early retirement

Along with the usual painful gastrointestinal issues caused by coeliac disease, Pam also suffered from severe fatigue, ataxia because of damage to her cerebellum, some neuropathy affecting lower limbs, problems reading, plus memory and some speech issues. Her condition caused her to take early retirement from the NHS due to ill health.

Gill

Gill, 57

Ataxia not relieved by a gluten free diet

Gill was diagnosed with coeliac disease in 2015 after an array of tests to understand the cause of symptoms – tingling in her lower limbs, balance and speech issues and fatigue. Unfortunately, despite following a gluten free diet since her diagnosis, her symptoms have not abated and each day is a challenge and because she doesn’t suffer typical coeliac disease gut symptoms, people find it hard to understand her condition.

Vijay

Vijay, 35

Life turned upside down by diagnosis


Vijay suffered suffered on and off for 18 months with ongoing symptoms of bloating, tiredness, feeling breathless, nausea and acid reflux, to name a few. It took several visits to the GP before finally being referred to a specialist. The diagnosis turned his life upside down and was very difficult to deal with and Vijay says without the support of his wife and family and friends, the emotional challenge of dealing with the condition would have been much harder.

Hinesh

Hinesh, 25

Living day to day with coeliac disease and Type 1 diabetes

Hinesh was diagnosed with Type 1 diabetes when he was 11 years old, and then with coeliac disease only two years ago. His diagnosis for coeliac disease came about after blood screening to understand his fatigue. He has difficulty finding the right gluten free carbohydrates to manage his diabetes.

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