Gluten Free Guerrillas

Life is a Gluten Jungle for Coeliacs. We'd love your help to collaborate and campaign for a better GF future for us, our friends and families. Together we can share tips and encourage organisations to offer more GF services and products. Get involved today. Connect with us on Twitter & Facebook! PS: Want to contact us? We welcome ideas, guest bloggers, review requests & press releases. Drop us a line at glutenfreeguerrillas [at] gmail [dot] com or Tweet us!

Coeliac Disease 101: Share to raise awareness & bust some myths!

It’s Coeliac Awareness week so we thought these handy cards would be useful to help start conversations about getting tested for Coeliac Disease with your family and friends. We’ve made them short and snappy so you can cut them out, leave them on the coffee table as a hint or share on Twitter/ Facebook or your own blog. You get the idea…

#1 Diagnosis

#2 Cross Contamination

#3 Treatment

#4 The Stats

#5 The diagnosis problem

#6 Pre-test tip

#7 Asymptomatic

#8 Genetics

#9 Risks

#10 Diagnosis

And if you’ve got some more suggestions of cards comment & keep them coming and we’ll post them up and credit you!

Thanks peeps ; )

The Guerrillas 

Coeliac Awareness Week - UK - 13 to 19 May 2013
We’re keen to ensure undiagnosed people with Coeliac Disease are tested. However, many Coeliac societies focus on the stereotypical symptoms, diarrhoea, stomach pains, bloating and so on.  Many Coeliacs (us included) had none of these symptoms. So our aim this year, is to raise awareness of the variety of different symptoms and conditions that can be caused by Coeliac Disease. 
If you’d also like more people to get screened for Coeliac Disease then pass on this message by sharing it on Twitter & Facebook. Remember to remind people that they need to keep eating gluten before the blood test and endoscopy.
Why should it take 13 yrs+ for someone to get an official diagnosis with Coeliac Disease?  Let’s change that and spread the word. And remember if you yourself have Coeliac Disease then encourage your close relatives to get tested as there’s a 1 in 10 chance they also have it. 
Don’t forget the majority of people don’t have obvious stomach problems with Coeliac Disease. So spread the word people!

Coeliac Awareness Week - UK - 13 to 19 May 2013

We’re keen to ensure undiagnosed people with Coeliac Disease are tested. However, many Coeliac societies focus on the stereotypical symptoms, diarrhoea, stomach pains, bloating and so on.  Many Coeliacs (us included) had none of these symptoms. So our aim this year, is to raise awareness of the variety of different symptoms and conditions that can be caused by Coeliac Disease. 

If you’d also like more people to get screened for Coeliac Disease then pass on this message by sharing it on Twitter & Facebook. Remember to remind people that they need to keep eating gluten before the blood test and endoscopy.

Why should it take 13 yrs+ for someone to get an official diagnosis with Coeliac Disease?  Let’s change that and spread the word. And remember if you yourself have Coeliac Disease then encourage your close relatives to get tested as there’s a 1 in 10 chance they also have it. 

Don’t forget the majority of people don’t have obvious stomach problems with Coeliac Disease. So spread the word people!

Our Coeliac Question of the Week: Dr Rodney Ford answers…

****EXCLUSIVE****

Our Question of the week is answered by Dr. Rodney Ford!

A brief overview:

Dr Rodney Ford is well known amongst the Coeliac community and his medical peers as New Zealand’s expert Paediatric gatroenterologist, allergist and nutrition consultant. He is also a champion of Coeliac awareness and passionate advocate of gluten free living and penned the book ‘The Gluten Syndrome’.

Gluten Free Guerrillas ask …

Q: When will my bowel recover?

Dr Rodney Ford answers…

A:

Coeliac disease is defined as,
‘small bowel mucosal damage, which is reversible on a gluten free diet, in genetically predisposed people (who carrying the DQ2/DQ8 HLA gene)’.

Gluten can trigger your body’s immune response that can then go onto cause this tissue gut damage.  However, this damage is slowly progressive: the longer you have been eating gluten, the worse the damage.  Of course, when you have this gluten-gut-damage, you do not absorb your food nutrients very well, and this leads to many other health problems. But, with any on-going gluten ingestion, the gut damage is perpetuated.


The good news is that as soon as gluten is (completely) removed from your diet, the bowel at last has a chance to recover.  In children, who have had a shorter time of gluten exposure, their bowel usually recovers very quickly (within weeks their symptoms go away, and within months their gut is completely normal).  It is rare for a child to not have complete gut recovery.

The bad news is that as we get older, and have had this gluten assault for a lot longer, our gut damage can be more severe and more extensive. Consequently, you can take a lot longer to get better.  You might take weeks and months to begin to feel better and sometimes it takes years for the gut to fully restore to normal.


Of course, if you still eat small amounts of gluten, or your diet is not scrupulously purged of gluten, then this small amount of gluten-toxicity can keep causing you ongoing damage to your gut (and other organs, especially nerves and brain).


To check if your gut has properly healed, you can either have second endoscopy (which is often scheduled about a year after you have started a gluten free diet), or you can see whether or not the tissue-damage-markers (tTG, DGP, and EMA) are coming down. There is a good correlation between blood test results and endoscopy.


The lesson from this: diagnose coeliac disease as early as possible, and once diagnosed remain strictly gluten free without exception, lifelong.  If you have ongoing gut disease and ongoing symptoms, there may be other things going on and you may need to have other strategies to help gut healing.

By Dr Rodney Ford, Author of The Gluten Syndrome

Thanks!

We’d like to thank Dr. Rodney Ford for answering our question and helping to widen the debate and awareness of Coeliac Disease for the gluten free community worldwide!

Discover more…

Dr Rodney Ford, Author of The Gluten Syndrome
Website: www.DrRodneyFord.com


News:

The Gluten Syndrome is now available as an eBook (only $4.99) revised new edition, 2011 see:  http://www.smashwords.com/books/view/58338



Want to quote us?
We’d love you to help us spread the word that a gluten free diet is for life for Coeliacs, no ‘ifs no buts’. Especially given the recent outcry and OFCOM complaint about BBC One’s Saturday Kitchen show..view our blog posts here. However, although the saying goes that ‘imitation is the sincerest form of flattery’ we’d really appreciate it if we collaborated together to raise gluten free awareness by you quoting us as the source of the article. We’ll promise to do the same. After all social media works best when we all play nicely online.

Cheers,

Gluten Free Guerrillas Team

PS Let us know what you’d like us to feature as one of our regular questions in future? 

BBC complaint rumbles on: The Coeliac Chef, BBC and PR faux pas

Guerrillas,

Like many of you we received the follow up complaint below from the BBC today. Those of you who’ve been away cast your mind back to our blog posts and complaints to the BBC and OFCOM ref Chef Antony Demetre’s comments on the Saturday Kitchen show that he ‘became a coeliac’ and ‘..eats as much pizza and pasts he can get every 3 months’. See our archive for all the previous blogs - then read on…

In a wierd co-incidence it didn’t go unnoticed by us that today there appeared a large PR feature in London’s Metro newspaper for city commuters on the joys of gluten free Quinoa featuring Coeliac chef himself - Antony Demetre!  Ironically it was entitled, ‘Coeliac Awareness Week: How to give up gluten’. See here: Metro.

Well - we thought you know what they say ‘Any PR is good PR’. Yet we couldn’t help but think that the article which heavily focused on Antony’s career and his many restaurants was more ‘personal’ PR than ‘public’ relations PR. It seemed that this was his opportunity to redeem himself to Coeliacs and their friends and families for the faux pas he made implying he and people with Coeliac Disease like himself could continue to eat gluten. 

In part that approach of ‘lie low then do a PR-y something or other’ may have worked. After all most Coeliacs want an easy life. Geez it’s hard enough reading every drink and food label let alone finding the time to write complaint emails or blogs! Plus the ‘glutengate’ incident as it’s been wryly called online was now over a month ago. Yet as if illustrating that Antony’s PR team really don’t know much about crisis PR, engagement, positive messages, celebrity branding etc they launched the piece in the London paper today whilst the BBC was still replying to many annoyed Coeliacs! Oh and did we mention that Coeliac Awareness week in the UK starts from next week not this?  Ah, but we mustn’t grumble about small details like that!

It’s also worth bearing in mind that like retail sales PR has a cumulative effect. After all were it not for the poor initial response from the BBC, his agent and then his agent’s blog post on Antony all of which smacked of ignorance of Coeliac Disease and a blase laissez-faire attitude on the condiition we’re sure that the complaints would have died down a lot earlier. I mean all we and many other Coeliacs wanted was an offical apology/ correction in writing or live on air on the following week’s show. After all a gluten free diet for us is for life not just for Easter. So we tend to remember faux pas, especially big ones on national TV by a chef claiming to empathise and be a Coeliacs himself.

So today for us it was:

+ 5 points to Antony for raising awareness of Quinoa
(as the article glossed over Coeliac Disease)

-10 was our score to him in our minds for original faux pas

Bringing todays PR piece in the Metro to a total of - 5 

Aka still more work to do Antony if you really want to redeem yourself to Coeliacs and their friends and families. A proper sorry and offer to do some real long term awareness raising with the UK charity Coeliac UK might soften us all up a bit. In fact what would really win back our trust is if you actually took part in Coeliac UK’s challenge to eat gluten free for a week. After all judging by your comments on air we’re concerned that you don’t really understand Coeliac Disease or what going gluten free for life means. So we’re sure Coeliac UK could help you out with guidance to get you on the right track next week. You can join them here.

BBC COMPLAINT

But we digress! Back to the BBC response, here it is in full
(we’re still awaiting OFCOM’s outcome):

Thanks for your further contact regarding ‘Saturday Kitchen Live’. I apologise for the delay in replying. We appreciate our correspondents expect a quick response and I regret you‘ve had to wait on this occasion.

I’m sorry you found our previous reply unsatisfactory.

With regard to receiving a stock response, this is because the complaints we received were largely making the same point but we’re sorry we couldn’t offer individuals responses.

Your further concerns were raised with the BBC Executive Producer responsible for ‘Saturday Kitchen’ Live’.

I regret you felt the programme was irresponsible for including Anthony’s comments about how he copes with coeliac disease. Anthony’s unscripted personal comments in this live show were clearly not intended as advice to others.

Anthony underwent five years of testing and found that he was able to manage his diet this way quite safely. He wasn’t recommending it as something others should follow and we can’t agree that his comments would have been misconstrued or misleading. Indeed when making these comments, there was something in Anthony’s tone that gave the impression that he himself knew it wasn’t the most sensible way of managing his condition.

There is a great deal of information on our website with advice on how to deal with coeliac disease; however ‘Saturday Kitchen Live’ is not intended to be a dietary advice programme and there simply isn’t the time to cover such issues in the depth that would be required. Different people will have different dietary needs and advice should initially be sought on how to adapt to their own personal diet. This is Anthony’s way of managing his condition but the BBC in no way endorsed these comments or advocated this as a way of treating the condition generally.

I sincerely hope that Anthony’s comments did not detract from your enjoyment of the show.

If you believe a serious and specific breach of the BBC’s Editorial Guidelines has occurred here, and you wish to pursue this complaint further, you can contact the BBC’s Editorial Complaints Unit, within 20 working days, and they will carry out an independent investigation. You can write to them at the following address:

Editorial Complaints Unit

Room 5170

White City

201 Wood Lane

London

W12 7TS

Alternatively, you can e-mail the Unit at the address: ecu@bbc.co.uk, but please note that complaints submitted via e-mail must include a postal address as ECU findings are sent by letter.

Whether or not you choose to pursue your complaint with the ECU please be assured your further concerns have been registered on our audience log, which is a daily report of audience feedback that’s circulated to many BBC staff, including members of the BBC Executive Board, channel controllers and other senior managers.

Thanks again for taking the trouble to contact us.

Regards

BBC Complaints

Excuse us - we’re now off to rustle up some GF Pasta and sauce for dinner. Then we’ll be logged on to lodge our complaint to the BBC’s Editorial Complaint Unit. After all when you consider that there are numerous committees to ensure disability and green issues are tackled and intergrated effectively within the media surely they can get a cooking show featuring gluten free food right - right?

Your views:

If you still feel that the previous BBC responses missed the mark in addressing their lack of editorial intervention to put his comments into context, or pushed back Coeliac Disease awareness raising and mis-led viewers then join us in complaining politely and logically to the BBC.

Cite the grounds of: misleading broadcasting, inaccurate, dangerous to health (especially for newbie Coeliacs who may think they can cheat on the diet) e.g.offensive to coeliacs (misinformation and frustrating to view it) and harmful. The comments were not put into context by the producers so they were misleading and led viewers to believe, (through lack of editorial input on the show), that coeliacs can cheat on the gf diet and remain healthy.

This is very concerning when you consider friends and family watch the show, chefs and other hospitality industry viewers. What message did that show send out?  Can you imagine a similar show on the BBC’s Saturday Kitchen programme featuring a Diabetic chef who admits he regularly misses taking his insulin or metaformin and then says he binges on cakes and sweets ‘cos he just has to to balance his sugars’? 

Hmm we think not. Yet the show was on a parr with that. However, for some reason the BBC and the production company and Antony’s agent have all dismissed the complaints as ramblings of a handful of faddy gluten-freers instead of complaints from a community of people who have to manage their health through diet as there is no cure for Coeliac Disease.Yes we’re only 1% of the population yet our personal circles, our friends, family, colleagues are all effected in part by our gf lifestyle so we have reach and influence in the food market. Gluten Free products are more expensive than the mainstream and we’re loyal to great brands. So media companies should be embracing us not alienating us. QVC recently showed in the USA that they understand this by putting on a GF show. Why can’t the institution that is the BBC here get it right?

Or is this response to the Coeliac community and our complaints just indicative of the ignorance about Coeliac Disease? Do the producers and editors not understand  the harm it causes if people with it don’t go strictly gluten free?  Perhaps. Yet in that case we feel it’s all the more reason we see the complaints process through. So that we can ensure a publicaly funded broadcaster does not make an ill informed mistake like this again. After all don’t we just want to be treated like everyone else - fairly and with respect? The replies we have all received to date fail to do that. They show a lack of understanding and a blase attitude to the complaints and the time we have all taken to lodge them.

What do you think?

Will you complain or will you just tune into different shows and vote with your TV, feet and purse instead?

Our Question of the Week: Dr Rodney Ford answers..



****EXCLUSIVE****

Our Question of the week is answered by Dr. Rodney Ford!

A brief overview:

Dr Rodney Ford is well known amongst the Coeliac community and his medical peers as New Zealand’s expert Paediatric gatroenterologist, allergist and nutrition consultant. He is also a champion of Coeliac awareness and passionate advocate of gluten free living and penned the book ‘The Gluten Syndrome’.


Gluten Free Guerrillas ask …
Q: Is a gluten-free diet the only way to manage Coeliac disease?


Dr Rodney Ford answers…
A: Well, the simplistic answer to this question is “yes”.

However this is a complex question. To narrow the question, I will first assume that coeliac disease means that ‘a diagnosis has been made by endoscopy showing the characteristic flatness/atrophy of the small bowel mucosa’ (I will address the question of how early you can diagnose coeliac disease in a later blog).

Yes, a gluten-free diet is the central management strategy for coeliac disease. But what does gluten-free mean? A gluten free diet means zero gluten for life. No exemptions. Certainly there are many people who suggest that people can eat gluten to tolerance. I disagree. Any gluten has the potential to cause you harm.

But does zero gluten literally mean non-at-all? The most complex part of answering this question is “what does a zero-gluten-diet mean in terms of every-day practicality?” Recently, there has been a lot of debate about how many parts per million (ppm) of gluten is acceptable in food. Pragmatically, because it is so difficult to get rid of cross-contamination in food production and processing, the number of 20 ppm is now surfacing as a reasonable level of gluten to be consumed (some countries have 200ppm, and the FDA likely to agree to 20ppm). This seems to be a negligible amount. However, there are still concerns for some people who seem to be exquisitely sensitive to gluten.

For me zero-gluten means no gluten. This can be achieved if you eat fresh fruits and vegetables, unprocessed meat and fish, uncontaminated rice, corn and other alternate grains, and unprocessed dairy foods and eggs, nuts also. This means no packet or processed foods.

But it is a lot more that ‘just’ going gluten-free. Yes, there are a lot more things to do for healing someone with coeliac disease. The longer that you have had coeliac disease, the worse your body will be. More healing will be required. You may need additional minerals, vitamins and probiotics. There are a number of routine health checks to take. You should also ensure that your gut has healed (via blood test and maybe repeat endoscopy).

There is talk about vaccines for coeliac disease. I think these are a long way off. On top of this gluten is a trigger for many autoimmune diseases and neurologic conditions. So giving pharmaceutical treatment for coeliac disease will still not remove the threat of gluten to your body.

Zero gluten is the main stay of treatment for coeliac disease. I do not see this changing much in the future. I do see the gluten-free lifestyle being very widely adopted over the next decade. I do see better non-gluten grains. I do see a generation in much better nutritional health.

By Dr Rodney Ford, Author of The Gluten Syndrome

Thanks!

We’d like to thank Dr. Rodney Ford for answering our question and helping to widen the debate and awareness of why a strict gluten free diet is so important for all Coeliacs worldwide.

PS Let us know what you’d like us to feature as one of our regular questions in future? 

Discover more…

Website: www.DrRodneyFord.com

Book: The Gluten Syndrome by Dr Rodney Ford available here.
Also available via Amazon online.



Want to quote us?
We’d love you to help us spread the word that a gluten free diet is for life for Coeliacs, no ‘ifs no buts’. Especially given the recent outcry and OFCOM complaint about BBC One’s Saturday Kitchen show..view our blog posts here. However, although the saying goes that ‘imitation is the sincerest form of flattery’ we’d really appreciate it if we collaborated together to raise gluten free awareness by you quoting us as the source of the article. We’ll promise to do the same. After all social media works best when we all play nicely online.

Cheers,
Gluten Free Guerrillas Team