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!

Your help…

So it’s official. Us Coeliacs all talk a lot about food - don’t we?

Or rather what we can’t eat or drink any more - which is only natural. After all being bombarded by foods you used to love via online and offline media every day is kinda hard to ignore right? Yet tonight whilst liaising with our Guerrilla team we got to thinking..why the hell don’t we start a regular feature promoting the good aspects of being a Coeliac (Celiac) ?  

As they’d probably say on Oprah or Trisha lets reclaim this auto-immune disease and inspire each other to dwell on the good versus bad aspects. Yes it has a huge impact on our lifestyle - initially at least. Yet actually there’s many positives to life Gluten Free…

#1 Gluten Free Positive…

#2 Gluten Free positive…



Tell us…

Your GF/ Celiac/ Coeliac positives and we’ll add them to our blog series. 

Lunchbox Heaven:our top 10 tips for gluten free lunch

Howdy Guerrillas,

Now as we all know that discovering you’re a Coeliac or Celiac (especially if you had A-typical symptoms) can be daunting. Yet we think it’s even more daunting if you tend to err towards being a spontaneous type…

‘I’ll do it later, grab lunch on the run’

Suddenly you find that the work cafe becomes a minefield…

‘Bugger the salad bar has cous cous and everyone is mixing the tongs up’.

Do you want to take a chance that your salad leaves and tomatoes haven’t got cous cous on them?

Nope - neither to we. After eating a variety of jacket potatoes ’..yeah that’s all that’s safe for you to eat in here’ says the Catering Manager..you may - like us be longing for an exciting lunch. You may also have decided that you can no longer queue up and walk past all the ‘food porn’ to your lonely baked spud. Geez, why put yourself through that torture every day?

It’s time to take control, bite the bullet and start making your own lunch! Yes ‘can’t cook, won’t cook’ veterans we mean you! Yes students and you too! Busy Mums & Dads..you as well. Believe us..if we can master some nifty lunch meals then so can you. We were the world’s worse.  Why Pain au Chocolate for breakfast and Mr Baguette with egg and bacon from Pret A Manger were our closest pals. Not any more…Yes it’s a faff at first - who isn’t tired in the evening and doesn’t want to start making lunch for tomorrow?  Yes we know - we all are. But believe us if you start and do it for 3 weeks+ it will become a breeze. By then it’ll be a habit and you won’t even think about it.

Why you should start making your own lunch and seize control of GF food…

  • you will know exactly what went into it! What a relief
  • you’ll save time..no more 21 questions for the Corporate Chef!
  • you’ll save yourself a fortune (instead pity your colleagues running to the trendy cafe for £5 sandwich and latte)!
  • save time, less time queuing in line for a cafe meal more time to enjoy a walk in the park, soak up some vitamin D, catch up on work, phone a friend..etc
  • you’ll and ensure you’re well on the road to better health (after all making snacks yourself is far less fattening - most of the time
  • Plus if you buy and shop local you’ll also give something back to your community and can feel smug in cutting your carbon by not buying food with air miles…).

OK…we’re nearly convinced…but I don’t have a lunchbox..

So fear not!  We’re here to help. There’s lots of recipe sites and blogs out there on the net so we won’t bore you with those. After all we bet by now Google knows ‘gluten free’ is your top search term!  Nope instead we’re going to run through our top 10 hero products that will take you from ‘Grrr…why does everything damn thing have gluten in it?!’ to ‘Yum I’m so proud I made this great packed lunch myself and all my work mates are jealous. I don’t feel like I’m missing out at all!’

Our top 10 hero products for a savvy gluten-free lunch:

  1. Bon Appetit- Dine like a King!


    This box has got rave reviews on a number of site’s we’ve trawled.

    It looks fresh and adult in design.  Enabling you to take rice noodles, sushi, salad, gf pasta or whatever you like. It’s made from polypropylene and divided into sections so you can split different foods; there’s even a removable inner bowl so you can microwave part of a meal (!) but keep everything else cold. Plus with a sauce-dipping area and lift-out pot ideal for salad dressing, the glass-like lid creates a watertight, silicone seal for everything that’s inside, keeping contents fresh and crisp.

    YES - there’s more…. The lid doubles as a plate too, and as if that wasn’t enough, they’ve even included a fork with cutting edge, so you really can eat whatever you want wherever you are. How cool is that?!
  2. Bento boxes - stylish & great for OCD geeks…
    Nifty ways to store and travel with a variety of lunch food!
    Our pick of the websites include these and we think minimalist lovers will hunger for this one



    See: Casabento at http://casabento.com Or being frugal? Savyy Coeliac…why not make your own, raid your cupboards - here’s a handy site on how to..Just Bento

  3. Fruit lovers…enjoy! 

  4. Here’s a nifty idea. A lunchbox that keeps your fruit safe. No longer will you be rummaging around for that bruised apple at the bottom of your bag. Designed by a Dragon’s Den contestant this is a handy bag/box for anyone who’s keen to ensure they eat their recommended 5 a day fruit / veg.

    See:
    John Lewis  


  5. Sigg Lunch box: Like your lunchbox to look like your toolbox?



    Well look no further. Those clever Swiss people at Sigg have created a hard wearing aluminium lunchbox with fasteners and rubber seal to ensure that what’s inside stays in and the rest stays out. Great for the daily bustle on your commute or hiking through the highlands!

    See: NevisSport

  6. Best Eco box… We like this 3 in 1 stainless steel bento style box.

    Handy for lunch on the run and pic-nics. Unlike some plastic lunchboxes (which are pretty unstainable, hard to recycle) this nifty BPA-free lunchbox is great for packing lunch with variety!  It allows you to pack 3 items eg GF sandwich and two side dishes and is dishwasher safe.

    See: Eco Lunch Boxes

  7. Personalise your lunchbox! Whether you’re a big kid or your kid needs to ensure their box doesn’t get mixed up with others here’s some handy ideas…
    Identity Direct
  8. Cutlery - well if you’re gonna pack your lunch you need something to eat it with right?
    Right! Why not ditch the plastic and go for some sustainable bamboo cutlery instead?

    See:
    Ecolunches If you can’t bear to do without metal/ plastic these are pretty nifty. For the geek / multi-tasker they are retractable knives and forks… See: Firebox

  9. How could we write about lunch boxes without including ‘Hello Kitty?’  This small box includes cutlery. Handy for Kitty fans or pink addicts…
    See:
    Artbox 



    Also great for kids…The Tiger bag/ box!
  10. Mmmm Marmite! Want to travel light and just take a GF Sandwich?  This box is handy for short trips by train when you want to travel light. Or lunchtime mtgs. A retro box that feature Marmite (you either love or hate it!). The real stuff is packed with B12 and is gf in most countries. Say goodbye to clingfilm, foil and soggy sandwiches. We love this as GF bread can fall apart a lot more easily than ‘normal’ bread so give it go…

    See: Marmite on Monsterstuff

  11. Sigg Water bottles - that’s right peeps a water bottle.



    You don’t need to go camping to be eco/ frugal. Why pay for bottled water when you can filtar your own at home or use tap and take it into work with you? Light and stylish you’ll love Sigg. Plus it’s a great way of keeping track of how many bottles of water you drink at your desk. Just fill it up from the water cooler. Or if you work outdoors - even better as it keeps drinks chilled and is hard wearing!
    See: Cotswoldoutdoor

* We also love this below…


Although we fear it’d be all too easy in the morning to mistake it for our laptop bag!

See: Lunchboxworld

Remember…it pays to shop around.

Try your local charity shop, ebay, amazon online or department store and compare prices to bag your lunchbox bargin!

PS And if you really just need 1 hero product we recommend this…Ever had that sinking feeling …oooh what’s that whiff? And realised the banana you’d packed earlier has been battered to bits at the bottom of your bag?

No..oh well - you must be uber organised already - why are you reading this?! 

Yes?  Ahaha well then like us you’ll love this…




the banana guard!
See: Banana Guard


Be inspired…here’s some other handy sites…

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’.

Our question this week..
arose as we’ve had a lot of on-going queries on our Health Site HealthUnlocked and our facebook page ref skin problems and Coeliac Disease.

So this week we at Gluten Free Guerrillas ask Dr. Rodney Ford…

Q: When will my skin feel better?


The classic skin disease associated with gluten is dermatitis herpetiformis (DH).  This is a very itchy skin rash, it is a skin inflammation having an appearance similar to herpes with little blisters at times.  About 80% of people with this condition also have the intestinal gut damage of coeliac disease.  However, many skin sufferers may not be aware of any gut symptoms.  DH has been reported in children as young as one year of age.  However, it is mostly found in people in their early adult life.  But it can strike at any time.  Indeed it can present in coeliac’s who have started a gluten free diet.

DH is slow to heal on a gluten free diet.  Usually symptoms will go away within months or years.  However, in some people it may take a decade to feel fully better.  Being strictly gluten-free is very important. The risks of developing the associated illness of DH, such as other autoimmune diseases, decrease significantly on a gluten-free diet.

Eczema is also associated with coeliac disease and gluten sensitivity.  In my clinic I would see a coeliac present with eczema about one a month.  When they go on a gluten free diet, often the skin clears within weeks, but then relapses.  It will then take six months to a couple of years before the skin fully heals.  This is probably because of the immune complex disease from IgG Gliadin in the skin.  This is in contrast to the DH disease which is an IgA immune complex.

On a gluten free diet, skin does take quite a long time to heal.  It is a matter of being patience.  Again it is important to be strictly gluten free.  Even small amounts of gluten can trigger a relapse of these gluten-related skin conditions.

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 revised new edition, 2011 see:  http://www.smashwords.com/books/view/58338

Be Coeliac Savvy and share this blog post:
Why not post a link to this post on your facebook wall profile and spread the word on Coeliac Disease?  Maybe you you have close relatives that don’t think they have the ‘typical’ stomach symptoms of Coeliac Disease? If so this blog post may help prompt them to have the Coeliac blood test you’ve been suggesting to assess if they may have undiagnosed Coeliac Disease.  Alternatively tweet the post and help spread awareness on twitter.

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’. 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?

Open Letter reply from the BBC re: Saturday Kitchen Coeliac Faux Pas


This is how Coeliacs feel about the Saturday Kitchen show and BBC responses to their complaints…Send your captions into us via twitter: @gfguerrillas or comment at the bottom of this post!

Guerrillas,

If you’ve kept up with the BBC One Saturday Kitchen TV controversy you’ll know that in a nutshell…

-The show on Saturday 9th April featured a Michelin Star winning Chef Antony Demetre (chef-patron of Les Deux Salons, Arbutus and Wild Honey restaurants in London)
-Who was presented on the show as a Coeliac and said on air whilst creating a gluten free Quinoa dish,

‘…I went gluten-free when I became a Coeliac…then every 3 months I eat as much pizza or pasta as I can get my hands on..as otherwise my body rejects it..’ 

{?! Hmmm… yes there were many stunned reactions by Coeliacs watching the show and from their friends who rang their Coeliac buddies to offer to take them out for a slap up Pizza Express binge!}

- Coeliacs plus their friends and families are annoyed by BBC’s lack of duty of care towards viewers
- Many wrote to the BBC, (a publicly funded broadcaster!) and asked them to explain why there was no production team intervention on the show, why their silence perpetuated that what Demetre had said was true for all Coeliacs and why they had failed to set the context of his statements as his own personal preference
- Even Coeliac UK, due to pressure from their members via masses of posts on their facebook page on Monday morning, liaised with the BBC
- The BBC finally issued a wishy washy apology

Ref our Open Letter to the BBC

So we wrote an Open Letter to the BBC today (see our past post) and urged them to issue a proper apology/ statement on the show this weekend…

We waited…we hoped…we received thanks from many other Coeliacs..then we heard a *ping*.

We checked our mail and this is what we received…

bbc_complaints_website@bbc.co.uk

 to me
show details 23:45 (28 minutes ago)  

Thank you for contacting us regarding the BBC One programme ‘Saturday Kitchen’ broadcast on 9 April.

We understand you were unhappy with the comments made by Anthony Demetre about his eating habits even though he has been diagnosed with Coeliac disease.

Anthony is a diagnosed coeliac and his children have shown signs of wheat intolerance. He therefore cooked a dish that was without gluten as it is something he has always been keen to support within his restaurant business.

In discussing his eating habits Anthony was expressing his own personal way of coping with the condition and at no point did he advocate it as a diet that others should try. He accepts that maybe his choice of words could have been better judged but at no point did he intend to anger people and he is perfectly entitled to control his eating in any way he deems right for him. However, he apologises should anyone have been offended or upset by his words but he will continue to serve and cook gluten free food, something that is very unusual in the world of professional chefs.

‘Saturday Kitchen’ highlights a range of different culinary style and foods. We always strive to provide recipes that are suitable for all diets and we will continue to do so.

We would like to assure you that your concerns were raised with the ‘Saturday Kitchen’ production and registered on our audience log. This is the internal report of audience feedback which we compile daily for all programme makers and commissioning executives within the BBC, and also their senior management.

Thanks again for taking the time to contact us.

Kind Regards

BBC Audience Services

www.bbc.co.uk/complaints

NB This is sent from an outgoing account only which is not monitored. You cannot reply to this email address but if necessary please contact us via our webform quoting any case number we provided

We were so pleased to see the BBC was taking the views of Coeliacs and their friends and families so seriously…NOT.  C’mon BBC we’re not stupid please stop sending out auto-mated ‘corporate’ replies to a serious issue!

If at first you don’t succeed..rather like the Gluten Free Diet…

Well you know what they say try again - so 3rd time lucky…

Dear BBC…

Please re-read our Open Letter aka Complaint number 2 about your programme inaccuracies on last weekend’s Saturday Kitchen and the shirking of your duties as a broadcaster.

Here’s a handy link to our earlier post to save you time.

We await a proper reply *heavy sigh*…

Gluten Free Guerrillas

PS

Neither us nor our fans are fussy about whom we receive a reply from. We’d just love a reply / statement to put the record straight on the show this Saturday.

Let’s help each other, here are some suggestions of who could apologise…

a) Antony Demetre’s agent
b) The production company you used, herec) The BBC via your host Chef James Martin

Truth be told - you’ve made all us Coeliacs look like liars to our friends, family, colleagues..well we’re sure you get the picture. It’s kinda embarrassing for all concerned isn’t it?  All we’d like is a proper ‘sorry’ on the show.. surely that’s not too much to ask?

Oh yes and just in case any fresh readers think we’re overreacting..here’s a sample of other bloggers who appear to be just as concerned about the BBC broadcast as we are:

  • Alex Gazzola: Health Journalist’s intelligent blog post on the show and controversy:

http://foodallergyandintolerance.blogspot.com/2011/04/coeliac-chef-anthony-demetre-admits-to.html

  • Gluten Free Blogger:

http://glutenfreemee.wordpress.com/2011/04/10/bbcs-saturday-kitchen-faux-pas/

  • Gluten Freek Blogger:

http://gluten-freek.blogspot.com/

  • HURRY: 1 day left to watch the show on iPlayer!

The programme is still available to watch on iPlayer on the BBC online here:

http://www.bbc.co.uk/programmes/b006v5y2  and can be found on YouTube


Join our sister health site for Gluten Free tips!



Firstly an apology. I’ve been a bit under the weather. Hence the slowness in updating the blog. Luckily the other virtual Guerrillas have been keeping our Facebook page and twitter page full of interesting tips. Meanwhile I’ve been updating content on our sister Health Site here. Then it struck me that we hadn’t really mentioned it to you guys? D’oh! So here’s the low down…

Our sister health site

We’re keen to raise awareness of Coeliac Disease and enable those on a gluten free diet to take responsibility for their health and live life to the full. Whilst we love this blog and our Facebook page we realised that we needed something more…then we met the lovely team at Health Unlocked and realised we’d found a great match! The aim of our sister site is to promote peer to peer Coeliac patient support and tips. After all we’ve all been diagnosed at different stages often in different parts of the world. If we pooled that knowledge and resource imagine the health tips and advice we could share and the support we’d have. Of course the site is no replacement for ‘real’ medical treatment (you can read the T&Cs for the full spiel). Yet we found that the discussions we had on Facebook weren’t easily searchable and not everyone wants to spill their guts (excuse the pun!) online there do they?

The great benefit of our sister site vs other online social media is that it has these features :

  • rate your hospital (diagnosis & aftercare)
    so you or newbie Coeliacs can make informed choices about where to be treated
  • Q&As
    so any member can ask a question and get feedback or tips from other Coeliacs
  • Polls
    we regularly ask and invite ideas from you on gluten free and Coeliac related topics, this helps break some Coeliac myths and helps us see where you’d like us to focus campaigns, support and information
  • Blogs
    members can share their experiences and connect with others for support

Although the HU GFG site is biased towards the UK we all know Coeliac/ Celiac Disease crosses continents and knows no boundaries or surprises! So we’d welcome other members from around the world to input into your health care system, treatment, after care, check ups and stories. 

Hurry and hop across to join in the health debates!

It’s free to join and we’re looking for more members to blog about their life as a Coeliac or gluten free especially if they’re:

  • Gym bunnies (how does it affect your fitness levels and regime)?
  • Coeliac Drs/ Nurses (share your medical knowledge with patients in a friendly forum)
  • Researchers (share your latest findings)
  • Coeliacs with other auto-immune diseases (share how you got diagnosed and how you cope)

We look forward to seeing you soon!

Want to know more?

Note: the group is not designed for any businesses to tout your products etc so if that’s your bag then please just email us glutenfreeguerrillas AT gmail.com for information on new launches, reviews etc. This blog is the place for that stuff.

Gluten Sensitivity: Fact or Fiction?


(Copyright Dr. Osborne)

I’ve been wanting to write a post on this for a while, so thanks to Dr. Osborne’s Glutenology site for his excellent post on this recently which reminded me to do to a quick blog post on his article.

REFLECTION

The longer we are gluten free for the more we find we have niggling questions about Coeliac Disease. For example do you know of relatives that have similar Coeliac symptoms to you yet their blood tests/ endos have come back negative?

Do you ever think back to when you were you younger and tick through as list of common diseases or problems? e.g. Asthma, Psoriasis, allergic rhinitis, eczema, glandular fever, random aches and pains? Well if so then this post maybe of interest. I’ve spotted similar concerns amongst patients on our sister Healthunlocked site (HU) and those within the Thyroid, RA, B12 auto-immune groups as well. On these HU Community sites despite further testing many people are told they don’t have Coeliac Disease. So why do many insist on going on a gluten free diet or are recommended to do so by medical professionals? Is this faddy mumbo rumbo? Or is there such a thing as gluten sensitivity without full blown Coeliac Disease? Could it be that gluten causes problems in other auto-immune diseases?

RESEARCH
Two of the leading Doctors on Coeliac Disease treatment and research believe that gluten sensitivity does indeed exisit; Dr. Osborne (USA) and Dr. Rodney Ford (NZ) regularly blog about such topics. The recent post by Dr. Osborne sheds more light on this topic. I’ve summarised his post and included key extracts from it below for a speed read for many of you.

GLUTEN SENSITIVITY EXISTS !?

The argument Dr Osborne makes is that,


‘Lab tests have traditionally focused on diagnosing celiac disease. This has created a proverbial No Man’s Land for those patients who react to gluten differently. Because the labs come back negative for them, they are told to continue the consumption of grains, and they are told not to worry about gluten because they don’t have celiac disease.’

IBS…

Like me I am sure you have friends and relatives who may have other auto-immune diseases like Thyroid or conditions like ‘IBS’ who continue to feel sick for years despite taking prescribed medicines and doing new age relaxation treatments. Could it be that going gluten free would help them? After all us Coeliacs know that being gluten free can be a real pain in the ass! It’s tricky to read every label, hard to find ‘safe’ places to eat gluten free safely and we lack many of the grains in our diet that protect against diabetes and heart disease. It hardly seems appealing to confirm yourself to a life Gluten Free through choice does it?

Yet Dr. Osborne’s argument is that some people exhibit ‘direct auto-immune’ responses i.e. Coeliac Disease as the result of gluten intolerance whereas other people exhibit ‘indirect auto-immune’ responses i.e. weight gain, hormone problems, fatigue, etc as per the ‘HYDRA’ picture (copyright Glutenology and Dr. Osborne).

If we think back to how we felt years before our own or our child’s Coeliac diagnosis I suspect many of us will tick a number of those boxes:

  • acid reflux (tick)
  • fatigue (tick)
  • hormone problems (tick)
  • weight gain (tick)

Indeed I know personally that once I had ballooned to a size 16 (42 Euro) for no obvious reason and had continual acid reflux and run down problems it was only then that I attempted to look at my diet after ‘traditional’ medicines and creams for allergies hadn’t worked. 5 years later I was finally diagnosed with Coeliac Disease after to going to the Doctor with balance and nausea problems due to what I suspected was an inner ear infection. 

So if like many Coeliacs I didn’t display ‘typical’ or ‘classic’ Coeliac symtoms what was wrong with me and why wasn’t it spotted earlier? Well…Dr Osborne suggests that:


‘Gluten sensitivity manifests in hundreds of different ways. It has been called a multi headed HYDRA of disease. Each head representing a different symptom or disease. (For those of you who don’t know what a Hydra is – look at the picture above) Drugs are typically used to treat the symptoms of gluten induced disease, but unfortunately, they do not correct the core of the problem. So for every symptom a medication is used to treat, several new symptoms arise. (a Hydra will sprout two new heads for every head lost) Thus a person goes undiagnosed for years because doctors are chasing symptoms instead of addressing their root cause.’

TREAT THE CAUSE NOT THE SYMPTOM

Ever had that feeling that your Doctor is treating the symptom not the cause of the problem? Looking back after my Coeliac Disease diagnosis I realised I had and  so had my immediate family. 

It seemed to me that something odd was going on and Dr. Osborne maybe right…after all what occurs before your villii are flattened and you’re diagnosed with full blown Coeliac Disease?  It doesn’t appear from no-where it’s often that the main symptom (as proven by our Health Site’s poll and other research papers online) are fatigue, not stomach problems.  It seems plausible to me that my parents (who have appeared negative in both Coeliac blood tests and endoscopies, yet continue to experience stomach problems and other issues) may have Coeliac Sensitivity. After months of harassing both parents to give up gluten for a week to see if they feel better I have managed to persuade my Mum to (yay - the pester power of children works no matter how old you are!). Whilst she knows her Thyroid and Pernicious Anemia (auto-immune bingo!) will persist she’s already noticed on day 4 that she’s less tired, less bloated and feels less foggy headed. So let’s watch this space at see what her Endocrinologist says at her next check up…

Now, we all know that embarking upon a gluten free diet is not to be taken lightly. However, I’m keen to see how this home grown experiment pans out. As Dr. Osborne illustrates those who may be gluten sensitive are currently in a ‘no-mans land’. There is still no official line on treatment for them in many countries and testing is still evolving. Yet anecdotal feedback from patients and new research continues to illustrate that some groups especially those with other auto-immune diseases may benefit from a gluten free diet e.g. Diabetic patients, Thyroid, Arthritis, Osteoporosis, Lupus, Sjogren’s syndrome. More research is needed and of course it depends on your perspective - what came first - the auto-immune disease or gluten sensitivity?

From research I’ve read on CD and gluten it seems there is something in Dr Osborne’s theory on the ‘Many Headed Gluten Hydra’ this yet it undoubtedly needs to be explored further until it becomes mainstream and is taught to medical students.

FEEDBACK:
So what do you think? Does this match your experience? Your reading?

Debate
Want to debate this further? Then hop across to our Gluten Free Guerrillas sister Health site here.

Original Article
Discover more on the original article by Dr Osborne* here.

PS: Yes I know this is an American site and some European fans and Guerrillas maybe sceptical - yet there are oodles of good information and research from Dr. Osborne and his team on CD. So as with any online source read the article and consider who and why they’ve written it and whether it fits with your view or other recognized articles/ research? We think it’s useful as it’s moving the discussion on Coeliac Disease further, let us know what you make of it as well.

The Banana Babies

Learn about the history of Coeliac Disease and how far we have come.

First hand accounts and interesting insights on medical views in the past and now.

Well worth a watch when you have the time. Don’t be put off by the dull front page. It’s a lively talk!