Looking online, I note that in the US 'Celiac' is a recognised charity. I have never seen anything relating to it here so this is a request to the whole of this group let us do what we can to start something over here. I presume that the funds would go to Coeliac UK.
In the US they use a green ribbon ... but I wonder if we could perhaps plum for something different over here and in Europe. Something that would be more in line with the grain or gross-grain ... perhaps a simple plaid - yellow and green; yellow and white; white and orange; yellow and orange - or if we want to be flamboyant and get everyone to notice then perhaps something really bright like shocking pink and orange!!!!
Any thoughts - and how can we go about this? Any ideas? Would all of you consider this a good idea? Should we make this 2012 a special year when we put coeliac disease on the map?
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You can also buy personalised car window stickers which I also think are a good idea.
The crossed grain symbol is a registered trademark of CUK so they have total control of it's use so I think we would have to think of another symbol.
I like the silly yak badge for coeliac children and what appeals to me as an emblem for coeliac is the chain symbol which was also used by the suffragettes. Because we are shackled to a gluten free diet and are restricted in what we can eat.
Incidentally the suffragettes also wore jewellery with green (give) white (women) and violet (votes) coloured stones to symbolise what they wanted. And your idea reminded me of this.
I personally prefer dark clothes and my friends tease me about wearing black so I'm not to keen on the shocking pink! I'd put a window sticker in my car but I'm not sure of what I'd be comfortable wearing as a symbol of being a coeliac. But it's a very interesting concept.
I think what we need to aim for is a badge or brooch plus a ribbon that will raise funds and put Coeliac Disease in the public eye.
I am not keen on green purely because it stands for so many different charities, diseases and illnesses that coeliac disease will once more take a back row and that will not do any of us any good at all.
We really need to raise the profile of the illness and raise funds to hopefully come up with a cure or if not a cure something that will give us all a better and healthier future. Not only this but it may help those who cannot afford buying the help. The fact that Coeliac UK is a 'charity' and yet you have to purchase membership of it makes it impossible for many who need help not have access to it.
Oh and I am not saying that you need to advertise that you are a coeliac this is all about raising the profile and getting funds to help us all. By all means buy a ribbon or button and put it into your top drawer. We do need to raise awareness I think.
Poppies are a wonderful symbol but often difficult to wear as they damage clothes .. I used to think that they were a means of employment for badly wounded soldiers and would do my very utmost no matter how much damage they would do to my garments - to wear them. This year I saw that many were made by prisoners and it disappointed me.
Hi Jerry, That is then done as an individual and not as a charity. This would surely weaken a charity status and not strengthen it. I think GFG should be funded through Coeliac UK but Coeliac UK should have sole responsibilty for the charity status. It needs to get spotlighted on television regularly, it needs to have articles in local and national press, it needs regular slots on the radio for phone-ins so that people's questions can be answered. In short in needs to be visible.
I appreciate that having stickers is a good idea and I don't wish to take that away or sound as though I am tyrannical in my opposition of going it alone. I just can't understand the constant silence. Why I am not hearing about this charity that is here to serve you and here to serve me? Who are the faces apart from Dr Chris Steele that are representing us? Why did I have to scour the web to find that they even existed?
I think the real problem here is that CUK are too focussed on prescription food and take funding from the codex wheat starch suppliers and as more and more coeliac are being diagnosed more and more of us can not tolerate codex or oats or low levels of malt or wheat deriv's so we are not members and CUK. Who only have around 60K members. There are probably around 200K diagnosed coeliac + self diagnosed coeliac so CUK has lost touch in my opinion and thats why they only have a minority membership.
What we have to ask ourselves is why do the Australian and NZ coeliac societies have 5ppm as gf and no codex wheat, no oats and no barley malt they even tag marmite as not suitable for coeliac over there and they have a list of wheat deriv's with below 5ppm that have too much gluten for some coeliac to tolerate. Whereas CUK list the same foods as safe for all coeliac.
We were discussing the gf diet on the BBC healthy eating message board and after a couple of days and 30 posts a coeliac said I ought to mention CUK but I wish they weren't obsessed with codex wheat.
Hi Tony62, I think we have to look at the reasons why we need either a badge/brooch or ribbon. Firstly, before finding out that I had coeliac disease the only other time I encountered it was when a person I worked with told me that she had been diagnosed and later on in life a friend's neighbour was rebelling by eating her children's cut-offs of sandwiches which were constantly making her ill.
That is very sad when this is such a major disease. Not only is it a disease that kills off the lining of the small intestine and damages our internal organs but as it is also an autoimmune disease we are effectively damaging ourselves through no fault of our own. We therefore need research to enable a way of intervening and prevent ourselves from creating the allergens that attack our bodies. The only way that we can get research done is with money. People who have money are rarely tempted to part with it voulentarily to pay for research for others so ... we have to find ways of funding research as a group of people who are affected by this dreadful condition - and let's not beat around the bush, it is a dreadful condition that will affect us every single day for the rest of our lives unless someone comes up with some form of help for us.
Now on a positive note: Think of charities that come into your mind. Why do they come into your mind? What singles them out? What do they do for the people they were created for?
We need our charity which is Coeliac UK to become stronger, to take its foot of the brake, to look to the future and be a flag bearer for us all. To go out and seek programmes that will help us all as individuals; to give us much more information; to find the latest research - tell us all about it - inform us what trials are taking place. Is there anyone here on Earth who has perhaps by chance developed there own defences that now prevents them from creating allergens? Have any tests been done on them? Are they willing to help the rest of us? We need a standard bearer to find things out for us and pass them on to us - all of this costs money. How many charities ask for payment from people that they serve? What about people who are retired and on a state pension but perhaps have a tiny supplemented pension of say £100 .. these apparently are required to pay for information to stay healthy. Why? We are given the impression is due to lack of funding. This being the case the only thing we can do is insist that coeliacs are not pushed to the back of the queue .... we want our place, for a change, to be in the numer one slot where we can be noticed and opportunites do not pass us by. On this note we all need to be more proactive, more vocal and a lot more determined or things will never change and someone else will elbow us out of the way and others will have the chances and we will just miss out once again.
Let us all try to be positive. If we want change we must insist on it we must get more noticed we must fight for it - not for ourselves necessarily but for those who have no voice at all and they are legion.
I think Tony62, that really we are singing from the same hymn sheet. I agree with you and think that in this day and age if food is prepared totally in a gluten free environment - perhaps using a totally coeliac workforce then food could and should be able to be produced 100% pure.
Looking at the problem logically - if any member of a workforce eats food containing gluten then by sod's law, gluten will be introduced accidentally from skin, clothing, shoes, bags, tea-break snacks, lunch breaks .. perhaps even just breathing in-and-out ..
However, battles such as this need to begin with publicity. Explanations and questions need to be evident in the public eye and at the moment this isn't happening. To improve the lives of all coeliacs we need to band together and insist on change.
yes i find it very hard and i have type 1 refractory coeliac diesase which is not controlled very well at the moment, constantly in hospital and i also have not worked since 2010 after i trained for 5 years to be a teacher, i agree we are all not bog standard as i didnt realise i was ill until they did the biopcies,
I couldnt agree with you more on that, I have uncontrolled type 1 refractory CD, and there is hardly any information on it at all, I was told to read a book its a joke.
I thought it really strange that immediately after the endoscopy I was given details of CUK by the hospital, and told to join up. It suddely dawned on me that my health care had been handed over to a charity. There appears to be something basically wrong with that, it seemed like the NHS washing their hands of the problem. If anything, we need to wear a badge or similar so that when people ask about it we can explain how the NHS has sold us down the river.
i agree totally with you, exactly same happened to me several years ago when i was first diagnosed, told me to sign up to cuk, hospital said i will be seein dietician on a reguler basis, have mri every 6 months to check for bowel cancer n 6 month scans for my bones all this has happened just once after first bein diagnosed over 3 years ago
I agree with you 100%, although my kids seem to be handling the "gluten free diet". I dont think I can really tell if things are ok with them until they are much older and able to tell me how they are felling. My son still isnt gaining weight and my daughter still has a bloated belly and she is still loosing her hair, from her eyebrows I can tell when I see the little freckle appearing.
I think what might be worth considering is to try and get a food label where everything under that label is produced from food strains that are not gluten free but are made from natural whole foods that have never contained gluten. This would mean that anyone who has coeliac disease would benefit from them. The Dutch use a method that doesn't use butter or milk in some of their cake/loaves so this also could be given consideration.
Has anyone here approached any of the manufacturers of 'gluten-free' or 'free-from' regarding this possibility yet?
To be honest I'd rather campaign for totally transparent labelling in food manufacturing - if something has a biological origin in wheat then it shouldn't be labelled wheat-free no matter how much tweaking it has had. I'd like to be the judge of whether I eat it. I think it would also be a way of changing what goes into our food as we'd be less likely to buy it, and obviously why they're keen to avoid us knowing. In their advice to their members they say "don't mention the wheat"! (see AAF)
I feel our big problem as coeliacs is we're up against the big bucks - much bigger than CUK - the EFSA and the grain baron cartels - AAF. The legislation for so much of what goes in our food seems to be through a directive from the people with an "interest in the industry" (their words, not mine).
"After having completed all its scientific studies, the AAC notified the final dossier to the Commission on 1 September 2006. On 6 June 2007, the EFSA issued its final opinion3 and confirmed that these wheat-based ingredients:
- are not very likely to trigger a severe allergic reaction in susceptible individuals.
- are unlikely to cause an adverse reaction in individuals with coeliac disease provided that the (provisional) value of gluten considered by Codex Alimentarius for foods rendered gluten-free is not exceeded.
Perhaps a key word here is exceeded - how much is exceeded and over what period - day? One slice of bread and glucose syrup in jam? Has anyone ever been told how much GF food is safe to eat? My healthcare team didn't. Interestingly 50%* of processed food contains glucose etc, so it's a tough call.
Note the 90 coeliacs who took part were in remission and although the results say the products are safe - 7 dropped out of the study due to stomach problems!
Hi Jacks, I think we have to aim to get all forms of wheat removed from coeliac foods. We simply don't want it in food stuffs that are marked 'gluten free' no matter what part of the wheat or for that matter barley and rye it is ..even the bran/husk. There are so many other grains we prefer and this must be emphasized loudly and often.
We have to get our voices heard and this silly law tightened up.
What we need to aim for is when a product says 'gluten free' it must not contain any part of wheat, barley or rye and if it does have oats it must be clearly labelled that it contains 'gluten free oats.'
Tony62, Could the coffee incident be due to the washing-up rather than the coffee containing gluten. If the cups, saucers and plates are washed in a dish washer then gluten would probably be stirred into the minute cracks that occur through using dishwashers; the salts, I believe cause damage to the surface of most things.
I'm not keen on cafe teas or coffees but tend to opt for the paper/plastic throw away cups.
Regarding the other points that you make. Agreed we have an uphill battle but we have to start somewhere. I think getting wheat removed from as many things as possible may be a positive start.
I think this is a good idea we need to get Coeliac out there as not alot of people have not heard of it maybe if we start doing ribbons etc then people will start going what is this for and we can tell them its for people with Coeliac disease and the Coeliac UK Charity to get them notice.
I think that our main priority to progress things for us all is to acquire some teeth and then to use them. The one thing that is currently lacking appears to be a willingness to move things along. There is too much complacency at the moment. Looking at history for it is a good lesson to us all, nothing ever happens until people really want it to happen. I am a person who wants things to happen to improve not just for myself but for everyone.
I think that we should use GFG as our fighting platform. By using GFG we can approach government ministers, members of the EU, celebrities, other coeliac organisations, most importantly we can start to make things happen because we do not need permission to ask on someone else's behalf. So although we may be small, it gives us as we are community based, much more power. Things and circumstances only change when people want them to change!
Hi Tony62, I think it may be a rather sweeping statement to say that there are far few coeliacs 'out there who are on computers' for we really do not know who owns or uses computers or what their various ailments might be. Some people spend the whole of their lives afraid - they therefore if they are coeliacs go online and see what is there. Who knows they may even be reading this right now. We cannot afford to presume anything.
There is an old saying when you want to achieve something really badly that advises slow and sure footing to obtain a good and assured outcome - in other words go slowly and you WILL succeed .. 'slowly, slowly catchy monkey.'
I think we are in a time when we want to succeed - we will go slowly, be certain of the path that we take and we will succeed!
Going back to the original post, I personally WOULD wear pin or badge to show that I am a coeliac. I have searched the net for one but can only find cheap paper buttons sold by profiteers; nothing small, metallic and of acceptable quality like the enamelled blood donor's award pin.
(Any takers and makers out there please note)
The more people who know about coeliac diseases cause and efects the better. The more attention is drawn to it the better chance we have of getting the problems fixed for all of us, including those of our fellow sufferer Tony62.
Second to that I would gladly have COELIAC tattooed across my wrist so it is readable by everyone I shake hands with.
Anyone want to sponsor me getting tattooed?
Hi Phil, I'll sponsor you if you get a coeliac tattoo.
When I was first diagnosed I bought a CUK enamel pin badge with the crossed grain logo.
So I think that GFG could sell merchandise to members promoting GFG and being a coeliac. With Fiona's agreement of course!
I also like the thought of car window stickers as look how many people would see that even when the car is parked in the rd.
I also think that this Blog has highlighted many issues not addressed by CUK and think there is a crying need for an organisation that supports ''refractory'' coeliac and the super sensitive coeliac as we have to avoid food clearly labelled as gluten free and why is this? it contains allowed levels of gluten!
So I think that those of us on here who feel strongly about this should get together and start a support group for coelaic who need life beyond codex.
I'm up for it so if anyone agree's then please contact me by GFG message and we will take it from there.
Ps, I'd wear an enamel badge promoting coeliac awareness as I wear an enamel poppy badge.
Enamel badges can be custom made but you have to buy 150 for £150 + postage so it would have to be either a joint venture or to sell individually to raise funds for a charity or support group. I have already had a message about shopping bags which's also a great idea.
So food for thought what would you want an enamel badge to say/look like? I like the thought of an oblong badge that says something like:
I could imagine wearing a small good quality shiny gold metallic coloured crossed grain pin because it would draw attention without 'shouting', and people with inquiring minds would ask what the symbol meant. That would start a conversation about Coeliac Disease rolling, perhaps with people who we wouldn't normally talk to otherwise.
Car stickers are a good idea if you're stuck in traffic. The don't start a conversation but they raise awareness.
It would also serve as a reminder in my case for people who I work with that I STILL can't eat any of the sandwiches, pastries, snacks and cakes that were left over from a conference, or the mother in laws rich Jamaican rum filled ginger cake that she sends over every Christmas!
Part of the impact of Coeliac Disease is that you can't get over it. You have it for life, not just until next Christmas when a new cake arrives.
I just have to pluck up the courage to get tattooed now....
Sometimes I wish I had a boxing glove on a spring so if any one says something stupid like are banana's gluten free then wham! or in a restaurant any staff offering forbidden foods then again wham and this would come in handy where you work! I find humour stops me getting wound up and sometimes I think these things and snigger at a stupid comment and the other person says; what!
Off subject - sorry -- the sense of humour went out of the back door the day the first letter arrived through the front door from Legal and General saying that my pension had been slashed because they had given all of my money away.
Hi Phil, I am really sorry about this and is it because of their investment in Southern cross? which I read about in the papers today. Or is it because of the massive loss that they made in 2009. I think that it's terrible the way so may innocent people have lost their pensions or a substantial part of them so again I am very sorry.
1. If people want to support Coeliac UK pls feel free to do so. We set up this group to be separate and we chose to deliberately take a different stance.
2. We are considering ways to raise awareness. Yet we'd prefer to do that in partnership with other groups and many other auto-immune charities rather than one. We're also looking at ways of doing so which will stand out and not just replicate what is already there.
3. We always open to ideas and welcome discussions on this site - however it really helps if we respect each others views and try and avoid too many heated discussions.
If you'd prefer to focus discussions on awareness raising etc vs health - which is the aim of this forum we can look at creating a specific group for Guerrillas on this. To collaborate and crowdsource ideas, energy and talents.
We don't want to stifle discussion we'd just like to make it clear that if we were to raise funds they wouldn't go to one group only. So do continue the good ideas.
Hi Fiona and I agree with everything you say here and I for one would really like to see a menu for discussing awareness and promoting awareness on GFG.
I also agree 100% about respecting other peoples needs and opinions as wouldn't it be boring if we were all the same.
I think that CUK have lost touch with many coeliac and I also like the idea of a ''Global coeliac society'' and as you know I support GIG which's a North American group. I also like how the Australian and NZ coeliac societies have 5ppm as gf with none of the forbidden grains.
As for fund raising I don't see why GFG members couldn't raise funds for GFG projects. But I'm also happy to raise money to help others and I think that it is wrong that there are so many people in the world without decent drinking water.
I also think that this Blog has drawn some amazing ideas and concepts, so nice one folks.
I've said it before and will say it again - we assume that CUK is the only voice of coeliacs, but it does not have to be that way. There is space in the market for another charity with different aims. In the same way that English Heritage does some national treasures and National Trust does others....
I am the director of a national charity and have worked in the third sector for many years. I've raised over £10.5 million for charities.
Setting up is not difficult; I believe there would even be funding for it.
What is needed is a cadre of people with common aims and clear set of objectives/aims. Support will build over time.
I'm up for it if others are and happy to help make it happen. My thoughts are below - DISCUSS!!!
There is a space for an objective charity to represent all coeliacs. It needs to address restaurants and lobby manufacturers and parliament. It needs to be independent and I would like to see it fund research.
My big areas are:
- greater awareness with GPs, MPs and lawmakers
- promotion of greater awareness within schools and drive to reducing gluten in school cooking
- standards/accreditation for restaurants
- research into cures and measures to help reduce symptoms once glutened
- research into better means of diagnosis - biopsy is medieval!!!
- lobbying of mainstream manufacturers/chains to remove unnecessary gluten from their products both gluten free and others
-research into other related, linked ailments and intolerances and autoimmune diseases
And I would add tighter definition of gluten free and free from inc the codex situation.
Needs to be independent from manufacturers with much purer aims.
Hi Meanioni, I like you think that it could be a very good thing for there to be another charity that is totally independent and separate from any third party influences. A pure charity whose aims are for a full all round improvement in life and health of coeliacs.
I realise that it would take time to be recognised and to be taken seriously but with the aims that you have listed above then it would have a new and separate path and purpose from CUK so there would be no toes trodden upon.
Wow that was quite a discussion folks. I have been a member on this forum since I was "diagnosed" To be honest I read it everyday but this is only the 2nd time I have commented. Some days I despair cause what I think is good to eat I come one here and someone says "yeah but that is rolled in flour to preserve i"t or some other comment. Since being diagnosed I have had little or no support from the Dr. No follow up even after my Endoscopy etc. My dietician is a joke and I probably know more about it than both of them and the more I read on here the more I realise that no-one really knows what we are eating, even though its labelled!!!!! Isn't that frightening. I don't feel much differant on my GF diet if I am honest until the past couple of weeks when I was introduced by the health food shop in my area to a Probiotic called Molkosan. I have been taking it twice a day and also Echinacae. I still have the ache and tiredness but the bloating and drawn out feeling has gone. I would certainly be up for wearing a badge of recognition and agree with the comment that it may start conversation and thereby raise some awareness. The food we have to eat is at best a joke. I have wasted so much money buying GF food and I am sure you all have too. I now tend to stick to fresh fruit and veg cause hopefully it cant' be wrong, but you may know differant!!!!!! My husband bought me a set of Australian cookery books GF ofcourse, and they are amazing. Seems some countries care about their sufferers more than this one.
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