Events

Are you going to London for the Allergy & Free From Show 2012? It’s less than a fortnight away now, but if you don’t have a ticket yet, you can still get a free ticket here.

We’ll be there.

We went last year, and it was great. Exhausting, because it is such a big event, but really enjoyable. We talked to very many different manufacturers, and learnt a lot about new products and services. I just love to see the range of products available to us constantly increasing… and I am delighted by the choice now available!

But the best bit, for me, was when we took a break for lunch in the cafe, which was selling only gluten-free products. That was excellent in itself (and they were pre-packaged, so no risk of cross-contamination). But there was more…

We sat down to eat, and I tucked in to my gluten free houmous and red pepper sandwich, without realising that my teenage daughter didn’t know how to open the triangular box to get at hers. Because she’d never, ever, eaten a sandwich that had been wrapped up and made available for sale before.

I’ll write that again: she’d never eaten a bought gluten free sandwich before. Obviously she’s eaten gluten free sandwiches all her life, but a year ago, we’d never seen one available for sale, still less one wrapped up in a triangular display box.

Such a little thing—a tiny thing—but it shows just how different her experience of life has been from that of most of her peers.

And she was thrilled. Here it is, a year later, and it still comes up in conversation occasionally. The […]

What do you call a group of gluten free bloggers?

Judging by the volume of conversation over the last couple of days, the answer is probably a ‘chattering’.

We—4 bloggers plus 2 coeliac advocates from Coeliac UK—had been invited to Newcastle by Warburton’s for a tour of their gluten free bakery and a discussion of their products.

It’s always instructive to get together with other gluten free communicators, and this was no exception. The other bloggers were:

• Annie, who runs Annie’s Supperclub – a secret supperclub which is part of the growing underground restaurant scene here in the UK, and which is entirely gluten free
• Fiona, a gluten free campaigner, from Gluten Free Guerrillas, who runs a Facebook community for coeliacs, their families and friends
• Katie, a foodie blogger, baker and nutritionist, who runs Apple and Spice, a blog about all the good things in life that are gluten free and vegetarian.

We weren’t there to meet each other, though, or the Coeliac UK team, but to meet Warburton’s, who were very welcoming, friendly and generous hosts: Hannah Flannery, the Product Manager, Graeme Tough, the Manufacturing Manager and Leighton Byrom, Development Technologist, all responsible for the development, production and sales of the Warburton’s gluten free products. And we were there to offer our perspectives on their products (quality, distribution and availability), and on supermarkets provision of gluten free products, as well as discussing ingredients, health matters and more.

We were also offered the chance to taste products due to be launched in the future. I can’t tell you what they are, but I can tell you that we—all of us—loved them. Warburton’s also shared some of their plans […]

The fourth session of the patient symposium was led by Dr R Howard from Birmingham, a clinical psychologist – and also mother to a coeliac teenager. It’s always nice to hear from people who understand the gluten free lifestyle at first hand!

She discussed the psycho-social issues around being diagnosed with a long-term condition, managing the diet, and dealing with undiagnosed symptoms. Here in the UK, it can take up to 13 years before getting a diagnosis, after numerous consultations. We were lucky that our family doctor considered coeliac disease from the outset. Not every doctor has this at the top of mind, because – as we all know – it can present in a wide range of different ways.

We need better diagnosis, for which we need a better education for our family doctors (who can’t, after all, know everything about everything: it wouldn’t be humanly possible). I was impressed to hear the third speaker (Professor Anderson) tell us that AstraZeneca put on a nationwide training programme on coeliac disease for GPs in Australia – and that 50% of family doctors (GPs) have done this training now.

Dr Howard discussed quality of life issues (QoL). Apparently, although there is initially a vast improvement in the quality of life in the first year after diagnosis – as reported by patients – after that, there is a steady decline in reported QoL in adults and adolescents aged 8-16, quite possibly due to poor self-management.

The issue appears to be that in some cases (especially for women) suffering a chronic condition increases anxiety and depression. Once diagnosed and on a gluten free diet, the level of anxiety decreases. However, if people […]

Would you accept a weekly injection if it meant you could eat a ‘normal’ diet?

The third session at the British Society of Gastroenterology Patient Symposium was the one that I found most interesting.

Professor Anderson is working on a treatment programme for coeliac disease.

How would it work?

His vision is of a desensitisation programme (one that ‘switches off’ the immune response to gluten) that would involve 3 injections a week for a month, then a weekly self-administered injection.

This wouldn’t be suitable for everyone, only for those with the appropriate genes. But discovering whether you have the ‘right’ genes is relatively straightforward via a blood test.

You’d also have to have a fully healed gut before starting, proved by endoscopy.

Once well into the programme, you’d need a repeat biopsy to confirm that it was working, and that you weren’t suffering from silent symptoms.

When might it happen?

After 7 years, Professor Anderson has ‘proof of concept’. He’s done pre-clinical tests, identified the 3 critical components of gluten, and has managed to switch off the immune response in mice.

He’s now in Phase 1, and is testing on 34 coeliacs with the appropriate gene, and has confirmed that he has correctly identified the toxic elements of gluten. The next study would be with over 100 people. If that were successful, then regulatory approval could be sought.

However, they need $15m for research and volunteers.

This doesn’t seem like such a vast sum to me. Yes, it is a huge lump sum, but surely not in terms of the amounts of money spent on pharmaceutical research in other areas.

Fascinatingly, his research so far has been part grant-funded, and part funded by gastroenterologists. How amazing is that! Gastroenterologists […]