Campaigns

Coeliac disease, diagnosis and petitions

signatureIf you’re a UK citizen, and are concerned about those people who have undiagnosed coeliac disease, then please consider signing the petition now available via the 10 Downing Street site.

It is asking ‘the Prime Minister to find the half million people in the UK at risk of serious damage to their health from undiagnosed coeliac disease by including a target for diagnosis in the Quality and Outcomes Framework of the GP contract’.

You know what they say: you get what you measure. If doctors have a target to meet, then they might have testing for coeliac disease higher up on their agenda … it works for infant vaccinations!

Signing the petition is easy. You do it online, here:

http://petitions.number10.gov.uk/coeliacdisease/

Then they’ll send you an email to confirm that you are a real person; click the link in the email and you’re done.

Go on – and have a look at the other petitions online while you’re there. Interesting!

A week of gluten free awareness

We were eating lunch today, and discussing a question out of the Question Box:

If you could create a new holiday, what would it be and how would people celebrate it?

We had the answers you would expect:

  • from middle child: Give Me Chocolate Day
  • from youngest: Candyfloss Day
  • from husband: Cunning Plans Day, celebrating inventions
  • from me: Community Day – day off work to do voluntary work

But from my eldest daughter (our coeliac):

I’d have a week when everybody had to eat gluten free, so they could see what it was like.

Just when you think its all fine …

Did you know it is Gluten Free Awareness Week here in the UK?

Free From Millions

Here in Britain, we spend £180,000,000 per year on ‘free from’ foods – and experts expect this to double over the next five years. I’ll do the sums for you: £360,000,000 per year on ‘free from’ foods.

These aren’t just free from gluten, of course, but could include foods free from a range of different things, such as dairy, nuts and soya. And we are talking about specially prepared food, too – this doesn’t take into account naturally free from foods.

Suppose there are 60 million people living in the UK (there are actually over 60.5 million, but let’s keep the sums easy). That means that we are spending £3 per person per year on free from food at the moment. Or about $6 per head.

Doesn’t sound that much, put like that, especially if you know the price of free from foods. But it is in fact a huge market.

Suppose the figures were the same in America: $6 per head per year. Since there are about 303 million people in the US, that would be a market size of $1,818,000,000 per year. Set to double over the next five years.

Huge.

Is there any awareness of Awareness Week?

It’s Coeliac Awareness Week here in the UK – 14-20 May. Did you know?

There are a number of events going on across the country, and Coeliac UK have managed to get coverage on a lot of mainstream media – radio, TV, newspapers and magazines. Their newsletter about this week’s events is available here.

But how many people are actually aware of the Awareness Week?

A search on Google for ‘Coeliac Awareness Week’, gives 553 results (85 if I restrict it to sites from the UK only). Some for last year, obviously, and some for other countries, but this isn’t bad coverage. Much of it is from Health Trusts, online newspapers and a few entrepreneurial retailers who are marketing their gluten free wares on the back of the Awareness Week.

However, in terms of blogs, a search on Technorati reveals that there have been all of 5 posts so far covering this week (there were rather more covering the Australian Coeliac Awareness Week, which was back in March – 10 posts) – and 3 of those are from this blog (more to come I hope!).

The other bloggers who’ve noticed this Awareness Week are:

Now this, I think, is quite interesting. 5 posts so far this week, when there are about 90-100 posts every day that Technorati tracks tagged as ‘gluten free’. This is a worldwide figure, it’s true, but still …

glutenfreechart.png

Possibly this means that Coeliac UK hasn’t yet grasped the power of blogging as a communication device, though they’ve obviously worked hard this year to get articles into 13 magazines and 3 national papers, coverage on the BBC website as well as coverage on television.

I do think that coverage this year is better than last, and there are a lot of events on, organised by the local support groups, which should help spread the word.

But do you think Coeliac UK needs a blogger on board, to blog on coeliac issues, and raise the CUK profile? As far as the blogosphere goes, there isn’t really any awareness of the Awareness Week …

Coeliac Awareness Week 2007: Why me?

So – you’ve just been told you should cut out gluten from your diet, probably because you have celiac disease, though there are other reasons for going gluten free.

You’re probably going through one of the following:

  • disbelief – this can’t be true
  • denial – this isn’t true
  • depression – it is true, and I can’t bear it
  • reconciliation – it is true and I can cope.

These are often described as the four phases of bereavement, and it isn’t too far removed from the way people react to the diagnosis of a lifetime condition.

If you’re asking ‘Why Me?’, the answer is probably that you have the ‘right’ genetic makeup for coeliac disease, you have been consuming gluten regularly in your diet, and possibly that you have also experienced one of the following ‘triggers’:

  • stress (due to exams, a car crash, moving abroad …)
  • pregnancy (this can be pretty stressful too!)
  • surgery (not exactly stress-free)
  • change in nutritional status (gaining or losing a lot of weight quickly)
  • food poisoning or a stomach bug.

Sound familiar?

What about the genetic factor: is there someone else in your family with CD?

If you have it, it is quite likely that other members of your family may have an increased risk of CD:

  • An identical twin has about 70% chance of also having CD
  • A brother or sister with the same tissue type has about 30-40% chance
  • A brother or sister who doesn’t have the same tissue type – about 10%
  • A child – about 10%
  • A parent – 5-7%.

If you’ve been diagnosed, then you should ask for your nearest relatives to be tested too – just in case.

I know this doesn’t help, if you’ve not yet reached phase 4 (reconciliation), but this diagnosis isn’t necessarily a short straw – the gluten free diet, which will probably mean that you have to cook more food from scratch and eat more fruit, vegetables, plain meat and fish, is a very healthy one.

There are support groups around who will understand how you feel. In the UK, I suggest joining Coeliac UK and attending the local meetings – and visiting the messageboard (this is not a CUK board, but is run by volunteers).

Perhaps someone from other countries could suggest a good source of local support …