What would you join a campaign about?

I've posted a thread about an issue I've had, but I'd be interested to know what issues - if any - people would feel strongly enough to campaign about (relating to being gluten-free, of course). The sort of things people might come up with (and I'm not saying if I would sign up to any of these or not):

- Why are GF pizzas always smaller than regular?

- Why are GF pizzas excluded from certain meal deals?

- Barley malt extract in breakfast cereals

- GF food on prescription - for or against?

- Layout of Free From sections - for people with multiple needs.

- The 20 ppm 'safe' gluten limit.

I'm not advocating for any of those - so don't bother criticising them - I'm asking what YOU would feel strongly enough to join a campaign about.

Okay, I would do the pizza ones - which is odd as I probably have pizza less than once a month. Funny old world!

12 Replies

  • I would support a campaign against prescription of GF foods if it considered the needs of those on low incomes i.e. if it went hand in hand with coeliac disease being taken into account for benefits assessment.

    I would also campaign for changing food labelling to clarify the difference between genuinely gluten free (gluten zero) and legally gluten free (under 20 ppm).

  • My campaign would be that ALL ingredients be listed by origin ie Maltodextrin = wheat, Glucose syrup = Wheat, Whisky, Gin etc = grain (wheat, rye or barley) not by the fancy refined names such as starches, also that the current Gluten Free status to be changed to mean that it is not from a gluten origin, with todays gluten free level being referred to as "Very Low Gluten". ie 20ppm. This to be included on all products for human consumption, foods, beverages, medications (prescription products) etc.

  • Hi Claudio,

    Here's my two penny's worth.

    Given the excessive costs of GF food, I would support any efforts to get this addressed. Within this topic a particular gripe of mine is the absorbitent prescription costs to the NHS. There is an opportunity, given the current NHS priority to find savings of £2b, to lobby to introduce a scale of benefits in the form of monthly payments to coeliacs, depending upon their circumstances. Thus doing away with prescription foods. The aim being to significantly reduce the NHS's GF bill and provide coeliacs with more control, flexibility and independence. It should also reduce the control of (or maybe even remove) the dominant GF prescription suppliers.

    This should expand the range and distribution of GF foods as suppliers respond to the additional consumer demand. The market should also become more competitive, thus prices should drop.

  • Like you, I tend to think that GF food on prescription has led to unintended consequences. I'm not sure how to ensure those on low incomes could still get GF food, but I do think the current system is a mess and has probably inflated prices.

  • Hi Claudia some excellent points here so here's my thoughts,

    1) I agree with pretender that ALL wheat derivatives should be labelled as such (they do this in the US and Australia even tho they are very refined and often have undetectable gluten, it makes 'us' the consumer aware of what we are really eating.

    2) Whether breakfast cereals should be malted is not the issue the issue is should malted breakfast cereals that are within codex be listed as OK for coeliac, so it is how codex is interpreted that is the real issue here in my opinion. And to make this point if UK coeliac weren't told that malted breakfast cereals within codex were OK then Kellogs might see a market for theirs over here.

    3) Should coeliac get food on prescription, this is a thorny issue as many coeliac rely on their gf script. However I feel that if we did not get food on prescription then there would be many more openings on the open market made by independent dedicated gluten free bakeries so I can imagine things being better for 'us'. And we only have to look at the crap in the free from aisles to see there is room for improvement. So I feel that food on prescription has had it's day and with more people being diagnosed and with the cuts needed because of the banking crisis that instead we should have a tax incentive or vouchers.

    4) 20ppm as allowed gluten again the real issue is how codex is interpreted so we have none of the forbidden grains and processed foods have to be within codex. In an ideal world I'd like to see codex as undetectable gluten with none of the forbidden grains.

    5) As for the pizza issue I feel that this is important for families with coeliac/gluten intolerant children so even though it doesn't affect me I'd support it.

    Here's a link to GIG certification (Gluten Intolerance Group) and eateries have these signs in their windows so coeliac/ gluten intolerant folks know that they can eat safely there, they also have 10ppm as the maximum allowed gluten for processed/prepared foods, the staff are fully trained in gf needs and they are tested regularly. I support GIG as I feel that they support me.


    That's my 2p's worth.

  • Indeed, it's a complex situation. I tend to feel that views like yours - and mine, and a few others - rarely get heard. So, we end up with the status quo. I'm not sure how we change the way people -and organisations - think, but the sooner we can the better.

  • Point 3.You do not need to have a GF diet, I only have the high fibre crackers, biscuits and pasta. Bread products do not contain wheat starches or any Codex as the low gluten is substituted with hydroxypropylmethylcellulose so is Free of Gluten (zero to some). I read labels, research ingredients, have a varied diet and eat out, biggest problem is medicines.

    Point 4. Undetectable gluten? if an ingredient is from a gluten source it should be listed.

    I am a coeliac that avoids all known ingredients from a gluten source and still finding them contrary to the preachings of coeliac organisations that state they are safe for coeliacs...........most but not all.

  • "Point 3.You do not need to have a GF diet"

    I think a lot of people would take issue with that.

  • Hi Caudio and the other respondents,

    It would seem by the responses that we don't have much of a GF lobby about any issue???????

    Maybe we best retrench and just pursue individual issues. It's a shame as I also am a 38 degree member and can see the potential of a collective voice:-)

  • Indeed - people don't seem to feel the need for a lobby. I think there are so many improvements that could be made but they are unlikely to happen unless there is a lobby to push for them.

    I know for many people the food on prescription is sacrosanct, but I think that lets so many manufacturers and retailers off the hook. I have some difficulty with Coelaic UK - it seems to me to be just part of the establishment rather than a voice for the average person with coeliac disease. Although it's useful that it has good relationships, I worry that at times it is a bit over-cautious about criticism.

    Maybe it's just that I'm a grumpy git. I'm from the North after all...

  • Hi from a grumpy northerner down south!

    I agree about coeliac UK. Huge potential waisted! I don't use them for anything. My view is they have become another charity that inwardly focuses!!

  • Yes, I'm also grumpy Northerner down South!

    Coeliac UK does do some good stuff but I think they are more based on a medical model. I also think they seem - like many boards - to aim for the great and the good rather than the people they should be representing; or maybe they should set up a separate arm for representation.

    I contacted them about 'campaigning' which in their book sets to be having a stall at the local supermarket. I was more thinking of campaigns to get eh supermarkets to be more gluten-free friendly.

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