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!

Is it an April Fool joke? Today the NHS is restructured

Unless you’ve been living in a cave for the last few years you can’t have failed to notice that the coalition Government has been planning how to restructure the NHS in England. Those with long memories will remember that this goes directly against the Conservative’s election campaign pledge poster (below). 

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However, there’s been very little real in depth press coverage of these changes. Indeed some NHS campaign groups have accused the Government of creating a media black out on the topic. 

So we thought that as the Government’s NHS reforms in England come into force today it would be useful to give you a simple run down of the changes, as each and everyone of us will be touched by the changes in some way. 

Why are NHS changes being made?

The simple fact is that NHS costs are rising at a much higher rate than inflation. This is due to factors such as our aging population, the high costs of new drugs and treatments and lifestyle factor costs such as treating obesity. The Government argues that without radical changes services would have to be greatly rationed in future. 

What you need to know… 

1) GP-led groups (called CCGs, Commissioning Care Groups) have now taken control of local budgets 

This means that CCGs (led by GPs) will decide on how funds will be spent on local health services from hospitals to community based clinics in England. There will be 211 of these groups and they replace the role previously provided by the PCTs (Primary Care Trusts). 

“CCGs will be the new rationers of care. This concerns doctors because they are very uncomfortable with having to take rationing decisions,” Porter said. “The General Medical Council’s ‘duties of a doctor’ says the first one is to make the care of your patient your first concern, and we’re being dragged away from that.” Dr Mark Porter, Guardian, Monday 1 April 2013

Pros: GPs are closer to their patients & their services that those civil servants in Ivory towers 

Cons: Few GPs have the additional time or training to manage these changes, many have stated in the media that their hands are tied as they have to follow Government cuts. The perception is that they will have freedom as to how budgets are spent, the reality is…yet to be discovered 

2) A new board, NHS England, will oversee the day-to-day running of health services 

SHAs (Strategic Health Authorities) which previously provided oversight of services are being scrapped. Instead that job will be done instead by the NHS Commissioning Board, headed by Sir David Nicholson. This board will be responsible for special budgets and services e.g. complex surgery, rare cancers and areas like dentistry.

Pros: this may create more joined up thinking 

Cons: does it add another layer of bureaucracy to an already complicated organisation? 

3) 152 primary care trusts are scrapped 

Pros: will the new NHS England board ensure greater consistency and communication across regions, helping eradicate post code lottery decisions? 

Cons: will it make it harder for local people to have a body to complain to and have transparency and clarity on what is happening to health services in their local area? 

4) Private companies now make up more of the NHS 

To date just 3.5% of elective operations like hip and knee ops were done by the private sector. This is set to rise under the new regime. 

Pros: will this make access to treatment simpler, quicker and more efficient? 

Cons: or will this mean that private companies will simply cherry pick services and treatments that they want to offer - which are the most profitable for them? Will we find that some vital services not profitable and so waiting lists are extended? Will there be pressure for GPs to use private providers to ‘save costs’? Is this the start of a slippery slope that will slowly erode the very nature of the public NHS? 

5) Your local Council will now have a key role

Councils will run public health services. This will include everything from obesity reduction programmes, stop smoking services to healthy lifestyle promotions. Of course local government has already been playing a role in these areas - often through partnerships with primary care trusts. They have been given a budget of £3bn a year.

Pros: the new thinking behind these changes is that councils will have powers over things such as schools to leisure services. 

Cons: this means that local Councils will have huge power over how we live our lives. Many of us already have individual gripes with how our councils run local services like litter collection and road maintenance. Do we trust them to more efficient with our healthcare?

Will you notice a big difference in health services?

Yes & No. 

Over the next few weeks your local GP surgery and hospital will probably look and act the same as it did before the changes came into effect. 

But…over the next few months and years the changes will influence our health service in the most radical way ever. 

Some of the most expensive diseases for the NHS to manage are heart disease, diabetes and dementia. There’s no magic cure for these diseases. The NHS needs to consider how to manage patients effectively with these long term diseases in the most cost effective way, whilst meeting their individual needs so that they can continue to live healthy and balanced lives. Currently many hospital A&E beds are taken up by people with life long diseases and problems associated with old age. We know we live in an aging population so the strains upon the NHS will continue to grow. Perhaps some of the NHS reforms will enable a greater range of community services to bridge this gap between GP and hospital health care?  Or will we see a rise in Private Health care provision for services which are most profitable and less integrated care for long term non profitable conditions?

What do you think? 

Love or loathe the new NHS reforms? 

Do you think that Coeliac services will be cut? Will there be even less prescription food available? Will Coeliac check-ups be cut (from our past surveys it seems like only a tiny minority of you actually have annual check-ups anyway)? Or do you embrace the changes? Would you like to see the NHS fully privatised? Or do you fear that we’ll end up like the USA with a two tier healthcare system i.e. for those that can afford to pay for it versus the poor who cannot? 

Do these changes alter the very ethos of Bevan’s original aims for the NHS?

Discover more: 

BMJ on health reforms

NHS Shake up and patient trust

BBC News

Keep our NHS public

Is there anyone that likes the new NHS reforms?

An end to Bevan’s dream?

Health Before the NHS

Gluten Free Soups and so much more!

Do you readily throw yourself in and explore the internet and what it has to offer or move more tentatively, familiarising yourself with a particular application, becoming more confident and comfortable with use?  Or are you keen to help your parents, friends or your gran understand what they CAN cook for you gluten free? Here’s some tips and resources for the ‘can’t cook / won’t cook’ amongst you or for anyone that needs educating in gluten free recipes!

Coeliacs today are very fortunate in having a wealth of information at their keyboard not having to rely on specialised, expensive books to offer recipe suggestions and cooking information. 

RESOURCES: 
Many of the mainstream recipe sites produce a mountain of ‘gluten free’ recipes when you type this term in the search bar. 

Some of our favourite sites are: 

Just search ‘gluten free’ or ‘dairy free’ too and you’ll soon be spoilt for inspiration. 


PINTASTIC: 
We started off trawling for recipes, spotting one that looked the part, printed it out and set off shopping. These recipes were then stored in some plastic folders and formed our growing library of good to eat meals. This dog eared, food splattered tome took precious space in the kitchen…..until…. we discovered Pinterest. 

After receiving an invite from the developers to join in and create our boards and start pinning we took a look. Initially we thought it looked pretty but was just another app that would provoke interest and then go the way of many others. 

However, with some free time and curiosity we started delving more and playing around and then thought it would be good if we could capture some of the good info we know is out there, put it all in one place and make it easily accessible to other people following a gluten free life. 

And that’s how it begun…. We now have 65 pin boards and 1000s of pins. The beauty of this Pinterest website is that when you locate a recipe you’d like to try on a web site, you just select Pin and the image immediately goes onto the board you’ve created and is there until the web page is removed or you delete the pin. No more trying to remember which site was the good one whilst trawling through your bookmarks. 

There’s also a phone app version so when you’ve pinned your recipes to try you can access these whilst shopping and see what ingredients you need. If the shop doesn’t have stock of something then you can easily move to another of your pinned recipes. 

Also if you’re a keen cook, baker or otherwise and want to share your best bread, soup, supper recipe then just take a snap of your finished efforts and you can upload this and type in your recipe to share with others. Other pinners can also put comments below your pins and this then helps build up the community feel. 

SUPER SOUPS: 

Gluten free soup recipes? As many as you like: 

Pinterest>Soup>Recipes

If you spot a pin that interests you then just double click on the picture and you’ll get taken to the blog, web site or other that the recipe derived from (see below). 

[Gluten Free Goddess Blog visit here]

If you decide to join Pinterest and create your own interest boards then you can merrily repin any pins that you see and quickly create your resource. Along the way you’ll discover interesting blogs you never knew existed, lovely unusual food sites and much, much more. 

It may take you a little while to become familiar with the unknown but there’s so much to gain. 

SEARCHING FOR GLUTEN FREE SAUSAGES?

How many gluten free sausages are there in mainstream supermarkets? Well we’ve pinned 38 brands on our GF Sausage board and there are bound to be loads more. 

Our fave sausages



There is NO irritating advertising on Pinterest (yet thankfully!) and neither does it collect your details. You sometimes get a small amount of spam e.g. when you click a picture you’ll get a message to say the picture doesn’t lead to a valid site. But these occurrences are few and far between.

So you can either: 

  • Have a look around and just use Pinterest to search for fave recipes without the faff of keeping track of web pages 
  • Sign up and join Pinterest and create boards useful for your interests and create your pins and repin other pins that interest you. 


Happy Pinning! 

This way to Gluten Free Guerrillas Pinterest boards :-) »»>

pinterest.com/gfguerrillas/ 

Happy New Year! 10 Health tools to help you keep your resolutions

Happy 2013! 

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What New Year Resolutions did you make?

The most common New Year’s Resolutions are ‘lose weight’, ‘go to the gym’, ‘eat healthily’ or ‘give up alcohol’. Yet these are often short lived goals as they’re not SMART (Specific, Measurable, Achievable, Realistic, Time based). Instead they should be more defined i.e. ‘lose half a pound a month until June’. 

So here’s some handy tools that will help you stick to your health goals this 2013. 

1. FitBit 
The FitBit is a tiny device that clips onto your clothes during the day, or can be worn on a wrist strap while you sleep. It tracks all your movement, all day long. It tracks your steps, flights of stairs you walk up and calories burnt.

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All of which can be synched to it’s online account for free so you can easily view your progress and win awards for achievements. It also synchs with the FitnessPal app so you only have to enter your food diary once. 

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At night it will determine the quality and length of your sleep. Think of it like a pedometer on steroids! There’s no excuse for not reaching 10,000 steps a day. And wearing it really does motivate you to walk more. And if the fitness bug really grabs you, you can also buy the FitBit weighing scales as well. 

FitBit is pricey. You can buy a cheaper pedometer and get into the habit of walking before you take the plunge to invest in all the ‘bells and whistles’ that this offers. However, the clever FitBit peeps have recently launched a new cheaper model that doesn’t track your sleep, which is great if you just want a cutting edge pedometer. 

All in all it’s a handy tool especially for students or those that have desk jobs and do little exercise. Before you know it you’ll be walking everywhere with your Fitbit. As they’re so small just remember NOT to throw it in your laundry basket by mistake - they don’t get on with washing machines very well!

Available on Android and Apple iOS apps. 

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Available from: Amazon or John Lewis

www.fitbit.com/ 

2. My Fitness Pal 
Is available online and Android and Apple IOS Apps. It that allows you to track the calories of the food you eat and other healthy activities. It can also be synched with the FitBit above.

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The great thing is it includes UK foods and gluten free foods so if you’re a Coeliac wanting to lose weight it’s simple to use. It can take a while to get used to setting it up and tapping in your meals but once you do it remembers them. 

www.myfitnesspal.com/ 

3. MoodScope 
Is billed as a tool to ‘Tracking your mood quickly and easily.’ There are many different philosophies around mood tracking, but give it a try and see how it becomes relevant to you. Did you have a huge fight with your girlfriend yesterday and have no idea why?

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Maybe it’s because you were in a bad mood, didn’t get enough sleep and skipped breakfast. 

www.moodscope.com/login 

4. Dayturn App 
This app allows you to track anything you want, and then will represent it visually. Whether your weight, number of pages you read weekly or time spent walking the dog, just input the number and Daytum will graph it for you.

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After all you can manage what you can see so there’s no excuse for not achieving your goal. Available on Apple iOS. 

daytum.com/ 

5. Ask Me Every 
Allows you to self-track pretty much what you want with AskMeEvery, which will text you the same question once a day. How many miles did you drive today? How many hours did you spend with your family?

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You simply text the response back and AskMeEvery will graph the information for you. There’s nothing like being nagged to force to do your goals! 

askmeevery.com/ 

6. Stickk 
Stickk does what it sounds like. It helps you set a goal and stick to it, with incentives of monetary rewards and social pressure. Want to quit smoking or lose weight?

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Get money and friends involved and you’ll hit your goal sooner than you think. 

www.stickk.com/ 

7. Evernote Food 
Want to eat out more this year or only eat healthy meals? Then use this handy app to take pics and notes on your favourite foods so you never forget a great gluten free meal at home or on holiday. Or use it to take pics of all the healthy meals you’re eating so you can track your progress and avoid ready meals and take aways (yes some Coeliacs do eat them!). 

Available on Android and Apple iOS. 

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evernote.com/food/ 

8. Strava 
The coolest part of Strava is that you can share your rides and runs with friends. Strava says it’s ‘for solo athletes who often train solo and want to connect with a community of athletes to foster some camaraderie and competition’.

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Go for a bike ride or run, bring your smartphone with GPS and sync the stats of your workout to the website. Strava is available on Android and iPhone for free. Handy for sporty types! 

www.strava.com/ 

9. Penzu 
Writing down your mood and goals can be useful to fend off depression and enable you to reflect on your achievements, keeping a diary can be a great lifestyle tool. However, not everyone wants to keep a hard copy which might be found by someone else. So this is where Penzu comes in handy.

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The free online tool enables you to create your own secure personal online diary. If you pay for the premium version (around £10 a year) it also allows you to customise the look of the diary and upload photos plus you can change the font for the handwriting and gain access to the app. More versatile and similar to a real paper diary than a blog it’s becoming a useful tool for diary writers. Available on Android, BlackBerry, iPad and Apple iOS.

penzu.com/ 

10. Kegal Kat 
Recovering from an Op or injury?  Need to strengthen your pelvic floor? Then Kegal Kat may just be the kind of fun 80’s style app that you need guys and gals!

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Available on BlackBerry, Android and Apple iOS (fee applies), it allows you to create reminders to do your pelvic pulls. Plus you can enjoy confusing your friends and families as they wonder where the ‘miaow’ reminder sound came from and start looking for an invisible cat! 

Enjoy! 

What online tools & apps do you use? What would you recommend as health tools? 

What Coeliac Check Ups do you get?

We know from our previous polls that a large percentage of our forum members don’t have any regular Coeliac health checks after diagnosis, Zilch - Nadda - nothing!  The emphasis on NICE Guidelines for Coeliac Disease in the UK is on diagnosis not after care. 

So our new multiple choice poll seeks to find out what checks you or your child actually have?  

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Join in and vote now - click here!

How were you diagnosed as a Coeliac?

We asked our forum members, ‘How were you or your child diagnosed with Coeliac Disease?’. We had a great response with over 180 members responding. However, we were surprised by the results. 

  • Only 50% of respondees were diagnosed via anti-body blood test & endoscopy biospy
  • Yet nearly 10% had self diagnosed themselves

Was this relatively high figure for self diagnosis due to poor help from health professionals?  With it taking over 10 yrs plus on average for someone with Coeliac Disease to be diagnosed it is understandable that some people get fed up of seeking medical help and just jump on the gluten free diet themselves.

Yet the danger is they may be doing so when they don’t actually have Coeliac Disease and they miss out on getting a proper diagnosis for what maybe another health issue entirely. After all a gluten free diet isn’t healthy for non-Coeliacs or those without other auto-immune conditions despite all the media hype about celebrities on the diet.  After all as we Coeliacs know going gluten free means we have to often take extra supplements like Folic Acid, B12, Vitamin D, Niacin, Thiamine,Calcium and Iron, as we no longer eat mainstream gluten free food that is often fortified with these. 

Your thoughts

  • What do you make of the results?
  • Did they surprise you?
  • Do they mirror your experience?

Let us know how you were diagnosed and if you think our poll reflects your experience. 

Our Health Poll Results!

Guerrillas,

The results of July’s Gluten Free Health Poll are in.  The emotional side effect of being a Coeliac is often not discussed. You told us in our recent poll that the two biggest challenges for you emotionally in dealing with Coeliac Disease were: 

  • 32% - Fear of eating out (being of being glutened) e.g. due to incorrect labelling, lack of staff training, cross contamination with gluten foods
  • 24% - Alienation and Loss (feeling the odd one out) e.g. especially at work and social occasions where food is involved

We thought these were really interesting findings and reflected what we had suspected. 

WHAT YOU CAN DO

So we recommend that more of you continue to ask and email companies to create more gluten free choices so that eating out gluten free becomes as normal as eating out as a vegetarian. Perhaps then the score on ‘alienation’ will also be lower.

GUERRILLA COMMENTS

Here’s a selection of comments from our Guerrilla Health Forum: 

YOUR VIEW

What do you think? Is there anything in our poll that surprised you? Do you relate to some of these comments more than others?

Tumblr Tweeps, 
Is this really true?  Have none of our Guerrillas on our health forum  been attracted to join from reading our blogs (or others) ? Really?  If you joined our health forum due to reading about it on here then hurry across and vote here!
Toodle - pip ; )

Tumblr Tweeps, 

Is this really true?  Have none of our Guerrillas on our health forum  been attracted to join from reading our blogs (or others) ? Really?  If you joined our health forum due to reading about it on here then hurry across and vote here!

Toodle - pip ; )

A Small Victory: BBC Saturday Kitchen Complaint…

Guerrillas, 

You may remember way back in April this year that the BBC’s Saturday Kitchen programme stirred up quite a response from us, other bloggers & many other Coeliacs and their friends & family. If you missed the programme, our gripe was that celebrity Chef Antony Demetre was allowed to come onto the show and discussed being a Coeliac then openly admitted that every few months he binges on as ‘much pasta and pizza as he can get otherwise his body rejects it’. Confused? Concerned? Frustrated by such mis-information on a national TV show funded by the public. You bet! We and many thousands of Coeliacs and concerned viewers wrote into the BBC to complain about the lack of editorial management, mis-information, blase attitude and general disregard that was shown to a medical condition. After all can you imagine a diabetic chef coming on specifically to talk about his diet, health & his diabetic recipes only pronounce he regularly binges on carbs & sugar? No we thought not.

Pros

So we’re pleased to announce that collaboration, persistance and Guerrilla pester power has finally paid of. Well kind of. For after all our complaints to the BBC & then OFCOM we have finally received notification that the BBC complaint has been upheld. 

Hot off the press: The BBC website announces our Guerrilla complaints were upheld!

Cons

However, at the risk of seeming like ‘pain in the ass’ Coeliacs..we’re not happy. 

Why?  Well read the upheld complaint in full. 

Complaint
A guest chef with coeliac disease referred to his habit of regularly lapsing from his gluten-free diet, in terms which suggested that this was harmless, or even beneficial. A viewer complained that this created an impression which was misleading and potentially dangerous to children with gluten intolerance who might have been watching.

1. Err sorry BBC there were way more complaints than just ‘1 viewer’! Are you trying to insult Coeliacs even further?  We believe in saying sorry properly when we make a mistake. Such a shame you don’t…

Outcome
The Chairman of the Clinical Services & Standards Committee of the British Society of Gastroenterology confirmed to the ECU that significant lapses from a gluten-free diet would damage the small intestine and increase the risk of cancer. The impression given in the programme should have been avoided or corrected.
Upheld

2. Oh good - you went to the top to get some medical advice on this before you upheld the complaint. Sadly this just reinforces that the show’s production team (Catcus) didn’t do their homework in the first place.  And why wasn’t seeking advice from the UK’s National Charity, Coeliac UK good enough…?

Further action

The production team has been reminded that accuracy is important, even when guests discuss how they manage their own medical conditions on the live programme.

3. This one really made us smile. Who knew that accuracy was important within programming? Hmm?  This is a very back handed apology. For anyone who watched the original show can see that the show’s presenters and the focus of the recipes were about gluten free food due to the chef’s health condition. So in that context whilst he was discussing his own ‘way of managing his health’ it was highly in appropriate to say what he did and even more so for the rest of the team to laugh nervously when he admitted eating gluten as a coeliac. 

Plus..

4. Where is the acknowledgement that a public apology needs to be made?
After all many members of the general public, newbie Coeliacs, chefs etc may well have believed the tosh that was spouted on the BBC show that day.

5. Why did the BBC merely issue at the time what appeared to be a PR statement (as if written from Antony Demetre’s agent) to all who complained?

We demand..

  • A full on air apology from the BBC 
  • A full apology from the BBC on their website that indicates more than 1 viewer complains
  • A positive programme from the BBC that showcases coeliac lifestyle & gluten free food in an accurate way to help bust any myths that the original show may have helped to perpetuate 

    So Guerrillas if you feel the same. Get writing to the BBC Board of Directors & OFCOM. A half hearted apology isn’t an apology in our books. 

    Best wishes
    GFG
    Team  

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? 

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 neurological symptoms of Coeliac Disease. We all know that when we are diagnosed much focus is made by the medical profession on healing the gut through a strict gluten free diet so that we can digest foods properly again and regain our health. Yet as we know Coeliac Disease is an auto-immune disease not an allergy (despite what ill informed articles may sometimes say!). So like us you may be one of the many Coeliacs that had non-typical symptoms which eventually led to the correct diagnosis of Coeliac Disease e.g. via neurological symptoms like dizzyness, poor co-ordination, fatigue, foggy headedness, repeat headaches, cramps and muscle spasms. So it got us thinking about our nervous system and when this will recover. After all we know it can take years for our villi to recover and grow back in our gut yet what of our neurological symptoms - when will these get better?

So this week Gluten Free Guerrillas ask …

Q: When will my nerves get better?

Dr Rodney Ford answers…

A:

There is overwhelming evidence that gluten sensitivity affects the brain.  My research, and that of others, indicates that gluten sensitivity if predominantly a nerve and brain disease.
Ford RP. “The gluten syndrome: a neurological disease.” Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
Hadjivassiliou and colleagues, “Gluten sensitivity: from gut to brain.” Lancet Neurol. 2010 Mar;9(3):318-30.

The brain is connected to every cell in your body by nerve fibres.  Your brain sends nerve messages to all the organs of your body.  This delicate and extensive nerve network is called the Autonomic Nervous System (ANS).  It is responsible for the faultless function of all of your organs, including the whole length of your intestines.  For your gut, this means that when you eat something it gets swallowed, digested, broken down and passed out of your bottom end, all without you being aware of it other than the taste and the download.

However, when this process goes wrong you get to know about it.  You suffer from gut symptoms (the belching, gastric reflux, bloating, tummy pain, diarrhoea, constipation).  Other symptoms that gluten can cause, related to the brain and nerves, include: epilepsy, ataxia, headache and migraines, depression and psychosis … and also behaviour problems, attention deficit disorder (ADD), autism and irritability.

Similar to the gut healing story, the longer that the gluten-illness has lingered (with gluten provoking the symptoms), the slower you are going to recover.  The adult literature on nerve and brain disease caused by gluten is not good reading.  It shows that gluten-nerve-damage is often not reversible.  It is permanent: once the brain and nerves are damaged by gluten, it is difficult to heal them.

Fortunately for children, they bounce back much more quickly.  Some lose their irritability and headaches within a few weeks of going gluten free.  Many children diagnosed with attention deficit disorder on Ritalin, feel so much better on a gluten free diet that they can reduce and even stop their medication.  Children’s learning improves dramatically if gluten was interfering with their attention and behaviour.

Yes, there is overwhelming evidence that gluten can provoke many neurological and brain diseases.  I recommend that any person with any nerve/brain/mental/mood disorders should be tested for gluten sensitivity (using the IgG-gliadin antibody test – also known as AGA: Anti-Gliadin-Antibody).  The earlier the diagnosis can be made, the speedier the recovery.  If gluten has been allowed to cause neurological harm for decades, it becomes irreversible. Think about gluten-nerve damage and get testing today.

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:
As May is a big Coeliac / Celiac awareness month 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?