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[bev40]

Hi

Its me again

Thank you all so much for your replies and your caring attitude. Today is the first day of my gluten fee diet AGAIN!! No, i don't want to be ill so i have only one choice. Thank you for hitting that home.

Now, during my research of the gluten free diet i discovered that wheat is to be avoided. Yesterday i picked up a packet of walkers crisps (potato chips i think you call them) On the back of the packet is stated 'suitable for vegetarians suitable for coeliacs' so i ate them. Imagine my horror, when reading the ingredients it stated one of the addiitives was derived from wheat!

I sent an email pointing out that although the packet said 'suitable for coeliacs' the product actually contained wheat, there reply to me is 'gluten is not the same as wheat and they dont actually have to put derived from wheat on their ingredients list but they do it for the consumer' and they are sending me their list of all products they make that are safe for coeliacs.

How can they possibly state 'suitable for coelaics' then list wheat as an ingredient?

Is it me getting it wrong or is it them????

[Guest nini]

you are in Europe, correct?

In Europe I believe that they allow Wheat Starch as an ingredient in gluten-free foods, and a small level (so many parts per million) of wheat/gluten to be present in a food and they will still call it "gluten-free"

I've heard that there is a bit of debate on this subject, and as far as I'm concerned, they are the ones that have it wrong, because Zero Tolerance is all that is acceptable. I react to the tiniest amount of cross contamination and I'm sure other's do to.

So in this case, it would be your personal choice to use this product or not. Me personally, I wouldn't use it... I would avoid anything with any trace of wheat...

this is kinda what we went through with McDonald's French Fries, where they were still claiming for a while that even though a flavoring in the oil was derived from wheat, it was such a minute amount and was processed out that the fries were still gluten-free... they have now come out and said they are not gluten-free.

I think we all need to take a stand with the companies that think that under so many parts per million is acceptable, and we need to let them know that it is NOT acceptable and we want Zero Tolerance for gluten.

[gfp]

you are in Europe, correct?

In Europe I believe that they allow Wheat Starch as an ingredient in gluten-free foods, and a small level (so many parts per million) of wheat/gluten to be present in a food and they will still call it "gluten-free"

Strictly speaking (and I realise how stupid this sounds) they can only call it gluten free if it contains gluten naturally and has been reduced. Yes ... I know! A cornb tortilla cannot be called gluten free if its 100% corn BUT if they add a little wheat starch they can call it gluten free ....

I've heard that there is a bit of debate on this subject, and as far as I'm concerned, they are the ones that have it wrong, because Zero Tolerance is all that is acceptable. I react to the tiniest amount of cross contamination and I'm sure other's do to.

See what I wrote above.... First I agree on you 100% but lets say they decide 200 ppm can't do any damage (which neither you nor I believe but...) just look at the pure inverse logic ... I mean its just plain wrong ... how can a celaic start to understand whgen the very standard is completely illogical.

So in this case, it would be your personal choice to use this product or not. Me personally, I wouldn't use it... I would avoid anything with any trace of wheat...

this is kinda what we went through with McDonald's French Fries, where they were still claiming for a while that even though a flavoring in the oil was derived from wheat, it was such a minute amount and was processed out that the fries were still gluten-free... they have now come out and said they are not gluten-free.

I think we all need to take a stand with the companies that think that under so many parts per million is acceptable, and we need to let them know that it is NOT acceptable and we want Zero Tolerance for gluten.

Absolutely .. having said that a while back walkers had CC from the cheese and onion which were then not 'suitable' (in their terminology) and they actually issued a warning ....so while they do need to be told gluten-free means gluten-free they deserve recognition on this and the fact they put "suitable for celaics" instead of gluten-free .. I think they do have a disclaimer as well that it might not be suitable for all. Technically they could label them gluten-free.

What needs to be done is the codex needs completely rewriting without any industry involvement so that gluten free means gluten free !

[nikki-uk]

Absolutely .. having said that a while back walkers had CC from the cheese and onion which were then not 'suitable' (in their terminology) and they actually issued a warning ....so while they do need to be told gluten-free means gluten-free they deserve recognition on this and the fact they put "suitable for celaics" instead of gluten-free .. I think they do have a disclaimer as well that it might not be suitable for all. Technically they could label them gluten-free.

-and they are only acting on the advice from CUK

CUK say most coeliacs can tolerate Codex levels(less than 200ppm),but there are an awful lot of coeliacs who can't.

I find the whole issue confusing.

CUK also recommend that you do not eat more than 5 slices of G.F Codex containing bread.

How do you transfer that theory to a bag of crisps (or how many)??

[gfp]

-and they are only acting on the advice from CUK

CUK say most coeliacs can tolerate Codex levels(less than 200ppm),but there are an awful lot of coeliacs who can't.

I find the whole issue confusing.

CUK also recommend that you do not eat more than 5 slices of G.F Codex containing bread.

How do you transfer that theory to a bag of crisps (or how many)??

Nikki, my opinion of CUK isn't very good to say the least. Not the support groups of volunteers, by CUK I mean the HQ organisation.

CUK are self appointed and on a gravy train for life so long as they control.

They campaigned against better labelling based on the fact "we" would be too stupid to understand and should use their directory. For years they continued the 1:1000 stat on their website long after it was recongised to be known to be wrong because it suited their needs.

CUK are interested in one thing and one thing only ... their continued jobs.

Since they are a registered charity you can check their accounts and 90% of their funding comes from gluten-free (as in codex) suppliers and the gluten-free suppliers obviously have a continued interest in using wheat starch or they wouldn't be using it at all.

They have also published under the guise of "interviews" many deliberatly misleading articles in crossed grain... these include "there is no link between celiac disease and depression, celiacs only get depressed because of the lack of choice"

They also actively limit that choice ... look at Italy where resto's are certified and receive a sticker and you can go to tourist info in any italian town and ask... look at the UK where CUK have trademarked the logo and charge companies to use it...pretty much a deterrent....and makes them a few pennies...

The directors also have other business interests you can search at companies house online for free and they operated a gluten free trading co from the same address as CUK with the same directors yet the accounts for CUK show no record of this company paying a penny in rent.

Meanwhile the support groups do a great job but also raise money for CUK ... and this money only flows in one direction. CUK advice the NHS trusts and governmental policy and all of it in a negative way for celaics to increase their dependance on CUK.

They claim to support all UK celiacs .. how can this be true if 9/10 are undiagnosed but most importantly they actively hide research. Somewhere along the line I'm afraid they lost the plot.

The problem is with them calling the shots companies like Walkers will follow.

[nikki-uk]

Gfp,you've raised alot of points that I agree with.

I read that article you mention in crossed grain-''there is no link between coeliac disease and depression''

''They only get depressed through lack of choice''

Oh perleeze!.How patronizing is that.

My husband has suffered from depression and mental health problems most of his life (I also suspect he's been undiagnosed with celiac disease most of his life)

Interestingly the psychiatrist I spoke to when my husband was sectioned because he was hell bent on suicide said he sees alot of coeliacs.

Did you read another article in crossed grain that states

''Coeliacs are not more likely to suffer other food intolerances/sensitivities''

The directory or 'bible' as we jokingly refer to it gathers dust on the bookcase.

The crossed grain logo-what a farce.As is their G.F map for restaurants-as you say,their insistence of charging for the priviledge is an excellent deterrent.

Finally,I often thought the single most important thing CUK could do was to educate the G.P's.

As G.P's are generally your first line of defense,they need to be able to quash the myths,(you don't have to be a child,be skinny,have diarrhoea or even have a positive tTg result to have coeliac)and to educate them in how prevelant it is,make them understand the 'non classic' symptoms etc...

Ok,stepping off my soapbox now ....

[gfp]

I'm afraid I'm inclined to agree

However the local support groups can be very good and run by coelaics as opposed to some director who doesn't have celiac disease.

The problem i have is that I see CUK rather negatively and I don't want my money going to support what I believe to be bad for UK coelaics....

When they use that money to lobby actively against better labelling or to bury research which is inconvenient for them I worry that any money I give is being misused. My mum always pays for a second directory to send me, they are still in the wrappers but I regret her spending £5 that will be negatively used.

On the other hand many of the local groups are an absolute godsend to people who would otherwise be lost....

[nikki-uk]

Ooops,I think we posted at the same time!

Yes,I agree that the support groups are invaluble to some,but I think the most useful info I have gained is through a message board I use in UK (and this one.)

To end with a positive note for CUK,

Recently North Lincs PCT recommended their G.P's stopped giving out food prescriptions for coeliacs (to help recoup their financial defecit)

There was uproar-and finally CUK stepped in and overturned the recommendation-but I suppose in those circumstances they had to be seen to do something.

[gfp]

Ooops,I think we posted at the same time!

Yes,I agree that the support groups are invaluble to some,but I think the most useful info I have gained is through a message board I use in UK (and this one.)

To end with a positive note for CUK,

Recently North Lincs PCT recommended their G.P's stopped giving out food prescriptions for coeliacs (to help recoup their financial defecit)

There was uproar-and finally CUK stepped in and overturned the recommendation-but I suppose in those circumstances they had to be seen to do something.

Not unless you know the real reason .... the NHS pays something like £5.25 for a gluten-free loaf which you can buy in the shops for £1.50 so the gluten-free manufacturers cream a whole load off the NHS with CUK support...

Most coeliacs have a yearly subscription so they only pay the £80 or whatever a year ....

In reality wouldn't it be easier to have a coupon on the supermarket loaf you could pay the £1.50 and be reimbursed? Of course the manufacturers would loose a whole load of profit .... but the supermarkets would carry far more gluten-free stuff.

I read that article you mention in crossed grain-''there is no link between coeliac disease and depression''

''They only get depressed through lack of choice''

Oh perleeze!.How patronizing is that.

Pretty much as far as it goes, but you notice its carried as a kinda interview so they are not forced to stick to facts...

My husband has suffered from depression and mental health problems most of his life (I also suspect he's been undiagnosed with celiac disease most of his life)

Interestingly the psychiatrist I spoke to when my husband was sectioned because he was hell bent on suicide said he sees alot of coeliacs.

Rather unsurprising and if you want to add ADD and a whole load of related illnesses I would hardly be surprised if its a very very high number....

Did you read another article in crossed grain that states

''Coeliacs are not more likely to suffer other food intolerances/sensitivities''

I honestly try not to.... they get me seething and we don't want that ^ (as per what we just discussed)

My mum used to send me them and they gather dust ... the problem is so many coeliacs rely on these for information not like you and I who use the internet....

If you have a spare week or month follow the links from here: Open Original Shared Link

Seriously this is an enormous compedium of information ... so pick a single subject ....