Campaigns

Coeliac Awareness Week 2007: Getting to Diagnosis

Yes, it’s Coeliac Awareness Week here in the UK again, and local groups are organising events to promote awareness of this disease. The focus this year is on getting diagnosed.

1in100.jpgHere in the UK, it’s estimated that as many as 1 in 100 people have the disease, and many – indeed, most – of these are undiagnosed.

According to Coeliac UK, it can take as long as 10 years from someone first presenting themselves at their doctor’s surgery with symptoms for them to get a diagnosis.

Luckily, it didn’t take us that long to get my daughter diagnosed – after all, that’s almost her entire lifetime! We first became aware that something wasn’t right at Christmas 1996, when she was just 1, and I took her to the doctor several times in the early part of 1997. Her symptoms worsened:

  • she lacked energy – she and I would sit on the floor at Tumbletots, me with my big pregnant belly, and her with her big swollen malnourished belly, and weep while the other toddlers played around us
  • she vomited at every meal – not a classic symptom, and one that the medics thought was irrelevant. But its not normal, is it?
  • she ate less and less, until she was eating only milk, grapes and chorizo (odd, I know – but naturally gluten free!)
  • her belly swelled until her belly-button everted (became an outie, not an innie)
  • her arms, legs and buttocks grew skinny

    At one point she was wearing the same size nappy as her 3 month old sister – at 21 months old – because the age-appropriate ones were too big for her […]

26 miles for coeliac disease

Good luck to all those running the London Marathon on Sunday to raise money for Coeliac UK:

Ali Gregory
Fiona Hampton
Adrian Parry
Jason Pitcher
Peter Merrick
Michael Dawson
Adrian Ford and
Ian Hodge.

Trevor Cummings, who had also planned to run, has had to withdraw from the London Marathon due to a broken metatarsal, but will be running the Abingdon marathon in October, and London next year.

Look out for the CUK vests …

Big decisions for Coeliac UK

Sarah Sleet, CEO of Coeliac UK, came to speak in our area recently, and although much of what she said was motherhood and apple pie stuff, there were a few really significant points.

The first was that there are 900 new members of Coeliac UK per month. Per month!

The second was that it costs around £25 per member to keep this charity going – and that Coeliac UK is largely reliant on donations from its members. At the moment it is free to join.

The third is that most people do not make donations. I forget the exact numbers (should have written them down) but somewhere in the order of 60% make no donation at all, and that only about 8% donate over £20/year.

It doesn’t take an economic genius to see that there is an ever increasing shortfall between income and outgoings. Yes, I know that some of CUK’s income comes from advertising in the magazine, or from sponsorship from the big manufacturers, but for the most part the income comes from us, the members.

The decision to be made is: should the charity move to a subscription basis, or stay on a donations basis?

This isn’t an easy decision for the trustees to make, and the implementation of the subscription would be tricky (what about families with more than one coeliac?). It will go to the membership for a vote before any final decisions are made, but it is something to think about over the next few months.

In the meantime, I shall commit to increasing our own donation to Coeliac UK. I – for one – hadn’t realised the cost per member of running the charity, and therefore […]

Not just a fad

The Sunday Times has an article today explaining that coeliac disease is not just a fad diet, but a serious disease requiring proper diagnosis and treatment by gluten-free diet.

Coeliac disease is an autoimmune problem, which means that the body produces antibodies to itself when gluten is eaten, eroding the villi in thesmal intestine. It isn’t just a matter of a little bloating, or of avoiding carbohydrates. Coeliac disease can trigger bloating, yes, but also vomiting, diarrhoea, mouth ulcers, skin problems, joint pain, miscarriages, depression, osteoporosis and cancers.

The variety of symptoms means it can be difficult to spot, though diagnosis is fairly straightforward, once the connection is made. Diagnosis is usually made by blood test followed by biopsy – and you should keep eating gluten until a diagnosis is made – or, of course eliminated. Going gluten-free may give inaccurate results of any tests.

It is great to see an article clearly explaining the difference between a fashionable diet and a diet required for medical reasons. All too often, people think that going gluten-free is something optional. Congratulations to Amanda Ursell for giving us such good publicity with such an accurate and helpful article.

Are you 1 in 100?

Coeliac UK have an online petition underway, to lobby the government for earlier diagnosis for coeliac disease and dermatitis herpetitformis. So far they have just over 3,000 signatures – but that is less than 10% of coeliacs in the UK

Left undiagnosed coeliac disease can lead to serious complications yet four out of five people remain undiagnosed.

Please consider signing the on-line petition to add your name to the campaign calling on the Government to recognise the importance of early diagnosis and provide more appropriate training for GPs.

You can sign the petition here.