So, after another week of stringently following GF diet by cutting out all GF breads (suspect the level is still not low enough for me), cooking only from fresh, avoiding anything with additives, emailing Coeliac UK with email questioning their complacency on labeling/20ppm threshold (and getting generic response), and having another slew of response emails from companies stating absolutely no gluten, when clearly products have been cross-contaminated (including Kallo GF rice cakes today), I think I'm beyond p'd off with the dire laws around product labeling in the UK. These products are making people ill, and companies are being given a license to charge 3 times the price for them without even having to test them properly. It stinks. It's time for war!
To add to this, there seems to be a standard of labeling stating product produced in facility that handles e.g. soya, or nuts but no regulation to state wheat/gluten. To use the example of some rice cakes I've been glutened with (photo attached from Tesco website) - they are labeled as 'gluten free', contain only rice and sea salt and label makes no mention of gluten in same factory but does mention soy, dairy and sesame as a risk for allergen contamination. Completely overlook mentioning wheat products produced in the same factory. The rules around this are entirely screwed up. More people have an issue with gluten - yes, it's not going to kill you on the spot, but it's going to be death by a thousand paper cuts until your body gives up from constant glutening and inability to repair properly.
There is also transgression between what Tesco post on their website about this product (the attached image) and what the actual product has on its label. So Tesco states 'Coeliac Friendly', but the packaging on the product simply states gluten free and also mentions the sesame and the dairy, whereas Tesco just mentions just soya as additional allergen risk. If I was sesame seed allergic (as that awful story recently regarding the young girl and Pret involved), and trusted Tesco dietary advice on this without reading the back of the label I'd be in big trouble.
Just seems such an issue across the board for all allergens.
I'm considering putting a petition on petition.parliament.uk/ to have the labeling issue debated/addressed for gluten. It needs 10,000 signatures for gov to respond, and a lot more for it to be debated. I have serious doubts there are a critical mass of effected people to reach that number, but wondering if anyone had any thoughts on this or endeavoured anything similar?
Hello Mise, I understand your frustration. I can't tolerate any wheat derivatives. Sometimes additives are derived from wheat, but because they contain no gluten, this is not highlighted. Codex wheat starch has the gluten 'washed' out of it, but is still permitted to contain 20 parts per million and can be legally labelled 'Gluten Free', even though it is not. Manufacturers have to jump through a lot of legal and compliance hoops in order to get gluten free status, and it is expensive to do, involving both the Coeliac Society and a certification body in UK, both of whom certify and monitor companies who make a gluten free claim. Specific procedures must be applied in order to prevent cross contamination. Often, this involves making gluten free and gluten containing products in different buildings, making sure any ingredients do not cross paths at any point. There are special clean down procedures and machinery will be swabbed to ensure cleaning has removed gluten containing ingredients, and gluten free must be separated in some way. I have found that some GF bread products do contain Codex wheat starch. Could this be what you have a problem with? I always read the label, even if it is something I have bought before, because sometimes formulations change. Wheat does crop up in some odd places, like tinned soup and sausages, although there are many good GF sausages about these days. Also some hydrolysed starches and glucose syrups can be wheat derived. Safest thing is to cook from scratch though I know it is not always practical.
Hi BabsyWabsy. The law (quoted from Ceoliac UK site) states:
"Only foods that contain 20 parts per million (ppm) or less can be labelled as 'gluten free'.
"
The problem is, many of the products I have been 'glutened' by, and are labelled gluten free state that they do not formally test for gluten and that they are sure enough of their ingredients and suppliers to state that (Northern Bloc Icecream is one of those - I got glutened by it), so there is a level of lax in the law. Equally, for large shops like Tesco - they have a lot of products on their safe for coeliac list that have never been tested (e.g. hummus). None of the labeling shows, as standard, if products are produced in same building or production line with gluten, or if they use wash down process. That information needs to be provided for people who are not tolerant of any gluten and need 0ppm. There is also the issue of some products being listed as gluten free or safe for coeliac on websites (again Tesco, Sainsbury, National Trust Shop) but the actual product itself is not labeled as actually gluten free - they are simply going on the basis of the product ingredients. I've had this experience with almonds from a National Trust shop - their website states gluten free, but the product does not have that on the label and producer does not test formally for gluten - I checked with them). You also have that random 'no gluten containing ingredients' one which means naff all.
I'm really stringent in reading labels, and have got into that habit for years. I've totally given up on gluten free bread, and the most recent 'glutening' was basic plain rice cakes from Kallo marked as gluten free. I've had similar with some vegetable crisps that have the cross-grains symbol from Coeliac UK. I am perfectly fine with rice, but these rice cakes kicked off a reaction and only have one ingredient which is rice. I visited the Kallo website and they do produce wheat products in the same facility. I've emailed them to find out what their testing process/cross contamination policy is.
I am massively skeptical of the 'wash down' processes or the assertion that the wheat products/flour are in different part of the building. Flour specks are tiny, hang in the air for days and can waft around ventilation systems.
Again, everyone is different and tolerancy differs from person to person, but I do not believe it is correct and proper to have individuals with a chronic disease facing a Russian Roulette scenario every time they do a food shop, put a piece of food in their mouth or go out for dinner. We need to get militant and demand better!! ; )
I do agree. They should not be suggesting on websites that products are gluten free when clearly, there has been no account taken of where those gluten free ingredients have been sourced from or manufactured. That is just jumping on the perceived bandwagon and often done in ignorance by some marketing person who really should get their facts straight. There seems to be a massive lack of understanding about cross contamination, often in catering establishments. Manufacturers must test to put a gluten free claim on a label or it is not a legal claim, but as far as I know, other establishments can say what they like on their publicity material. Cross contamination is a massive issue. Some factories that produce dry goods, like toasted almonds for example, have a dry clean down process, which often is not adequate to make a gluten free claim. Coated nuts often have wheat in the coating, or if they are loose, may have been contaminated by the scoop being used in other nuts. You are right about flour particles floating in the air and in ventilation. I was interim quality manager in a big commercial bakery for six weeks. That is where my wheat allergy came from, having to taste all the products and getting in my lungs and on my skin. I agree 20 ppm is too high, and is an 'average' figure. It is also cumulative. It is nerve racking eating out, and often you are made to feel you are being awkward when you are just trying to keep safe. I hope Kallo do respond because if there is any potential for cross contamination, they could have a recall on their hands. Very poor if they don't respond. I haven't had any dealings personally with Coeliac UK, apart from applying for a crossed grain symbol on behalf of a retailer. I also agree with the analogy of the alcoholic only having a few drinks. It can't possibly be good for folks with unhealed villi. What is the best way to make a noise about this? Manufacturers and retailers do try to have accurate labelling, but they do make mistakes. Just look at the number of product recalls on the Food Standards Agency website for 'undeclared allergens'.
To be harsh and cruel I have come to the conclusion that the answer is to get rid of Coeliac UK or remove their 'powers' to asserting that they are a leading charity for coeliac sufferers and call them out for what they are - well intentioned, but ineffective. They are providing a good front for sloppy practice and are not pushing the agenda enough. The full cycle of the coeliac/gluten experience is dire, from GPs not taking it seriously through to the products that bear gluten free accreditation but are making people ill. Coeliac UK are either clever con artists on the side of manufacturers (endorsing highly unhealthy, expensive 'alternatives' that are full of gluten) or well-meaning fools who don't quite 'get' the issue. They are a well established charity that dominates this space and are failing massively on all levels. There needs to be a small proactive group of activists who are lobbying at government/food standards agency level, independent of Coeliac UK. There also needs to be research evidence on the ineffectiveness of the 20ppm measure or a large-scale quantitative survey of coeliac/gluten intolerance suffers to find out how many have issues with the 20ppm. There was an All Party Parliamentary Group for Coeliac that no longer exists. That needs starting up again. Suit suggests a separate label for 0ppm, and I think that is an excellent idea. So let everyone and their dog plod along with the old 20ppm trope, and bring in a 'next level' accreditation for 0ppm products. There also needs to be strict penalties for food outlets that have GF menus but no GF training/standards in practice - start fining people and they will soon shape up!
I agree, the standards needs to be discussed, because it's to high. There could be a second labeling that aims for 0ppm.
The studies behind the decision all have small numbers of participants, and a few of them cannot tolerate the lowest testing amounts of gluten (in one study on children 6%). Most papers claim that 1/3 of coeliacs have damaged vilis prior experiment too, assuming it is caused by CC or too high levels of gluten in gf foods. There's always some products that exceed 20ppm when tested too, I think it's above 10%.
When it comes to allergies, like fish. The standards are set after the lowest amount of fish known to cause a reaction. Everything above must be labeled.
Gluten is set after "most coeliacs can eat safely"-standard.
But in order to participate one must be symptom free. And honestly, those with severe reactions... How keen are they to volunterly eat a certain amount of gluten every day for sometimes up to 6 months...? It's a choice to participate. It's a choice to continue participating.
But. If you have diligently been eating wholefoods and taken such care that you've avoided additives.. And you still suffer. Perhaps you then need to consider a secondary intolerance that you've gotten because of damaged guts and coeliacs? Due to lack of enzymes that cannot be produced properly.
This is where I get incredibly bugged by Coeliac UK. They are woefully complacent. Yes, they worked on bringing down from 200ppm to 20ppm, but that's akin to saying to individuals with alcoholic liver disease that they can still have a few drinks every day as 'most people' are ok with it, based on the very limited study.
I might get the petition rolling anyway, and see where it goes. The conversation does need to be tabled as making and keeping people ill whilst sticking a nice cross grain logo on it and allowing the manufacturer/retailer to charge 3 times the price with little or no justification seems the definition of madness.
As to being glutened - I had two plain rice cakes labelled as gluten free (Kallo). Nothing else, and the reaction was immediate. Have emailed them to ask what their policy is. I'm perfectly fine with rice, so definitely gluten cc.
Unfortunately I can't help you, since I'm outside of UK. And you'll soon be out of EU aswell.
But I reckon it needs to be brought up for debate many times.. That's how it works.. Slowly changing minds of people by making it familiar.
Send the package for testing, do you have an authority that is responsible for testing food?
I think that's another way to get attention. Always sending suspicious stuff to be testet "this made me sick. Bought it here at this date, I have coeliacs".
It could also be iodine in the salt. I react badly to iodine, worse if there's traces of wheat in it.
Ah, that's a shame. You seem very on the ball with all of this.
Your onward travels sound fun - anywhere exotic?
Yes, you're correct that it's a process of attrition and conversation, but I would argue that should have been/has been happening for many years with Coeliac UK and Food Standards Agency, with EU directives to back it up. Also, as I mention, the parliamentary group on Coeliac would have been discussing this at length, but seems to have disappeared a few years ago.
It's just a right old confusing hodge-podge. I've updated my original post above to outline that even what's on the back of the product label and what Tesco post on their website for the product is poles apart, particularly with Tesco making no mention of dairy and sesame risk to the Rice Cakes I mention under the allergen advice, but the product packaging does.
Re the salt - is that sea salt as well as table salt (the iodine/wheat issue). This is the bit that's new to me, as I'm learning a lot from your posts.
Well, I'm actually not a UK resident. I'm Swedish. And UK is about to leave EU.
Yes, they should have been using the allergy standards for gluten too. Lowest known amount to cause reactions. I support your fight from a distance instead.
I reckon seasalt is naturally high in iodine, since seaweed is too. Iodine deficiency is supposed to be a major health issue all around the world. Hence some countries (like Sweden) has ordered restaurants and producers to use only iodine rich salts. And there's always an excess of salt in ready made foods. (I think a deficiency can cause goiter)
I use Himalaya salt, it's supposed to be naturally low in iodine. But too much can still cause distress. And too little will probably cause a deficiency.
It's frustrating to not be able to eat things considered to be essential for health.
Ah, Swedish. I'm Irish, so I suppose I will be leaving the EU as well, but we are on a bit of a better footing with our 'special arrangement'. Luckily/unluckily Sweden didn't get to be colonised by Britain for 800 years .......
Thank you for your support though.
That's interesting about iodine, and not good that something so essential causes you so much issues. I've seen Himalaya salt in shops, but didn't consider why people would buy it. Good information.
I began buying Himalaya salt after I discovered what the additive E535 commonly used in salt was. Even though they claim it to be safe (unless exposed for acid), I just kept wondering what an *** who discovered how people could consume cyanide safely. How did they even come up with that idea, and who was brave enough to try it out?
I didn't like the taste of seasalt in stews and stuff, for some reason. (love it on bread) And it was actually quite expensive in the long run. Himalaya didn't have E535 in it, and one didn't need to consume tons of it for taste. So, my morals led me unto it. 🤣
Not so much leaving the EU, but living in UK as an EU citizens and not entirely sure if it's the best place to stay post-Brexit. Suppose it may not still go ahead.....
I've been looking at E535. WTF! That's mad. The more I look at additives the more random it seems. I've realised my lovely 'healthy' coconut milk has something called esters of fatty acids which has some pretty dubious origins. I found a research paper online questioning should this actually be in food!
Nothing seems safe. Might try Himalayan Salt now you've got me onto it as a better option.
Hopefully it won't go ahead. Northern Ireland will be caught in the middle, and Ireland would be pretty closed off from the rest of the world (my thoughts).
Yes, additives sounds nasty when reading about them. One can never be sure of how they were actually derived from the "natural source" either.
Hi Hidden , sorry about the delay in replying, we had a petition on here 5 years ago and CUK wouldn't back it.
Hi Jerry. Many thanks for updating on that. I should have done a 'petitions' search first, so thank you for the links. Astounding that CUK would not back this. I get more wary of them with each passing day. I still think it's worth a shot again, so thank you for your offer to back this. I think with Twitter work on pushing it out, it should be reasonably ok for a few signatures, but a struggle to get to the numbers that are needed for debate in parliament. I'm going to put a bit of a strategy in place, and share it on here before posting the petition, so if anyone one want's to comment on that, by all means. What would be really good for supporting all this is actual evidence for the numbers/% of people that the 20ppm and 'hidden' glutens don't work for. Are you aware of anything out there on this?
This is one of the studies behind the standards, where one discontinued due to symptom relapse on 10mg. Mind the graphs carefully, and their discussion: google.com/url?sa=t&source=...
Catassi 2015 says "It is clear that there is a wide variation in sensitivity between patients, but a systematic review of the papers dealing with this topic and recent data indicate that a safe daily limit is probably in the region of 10 mg.25,27 However, all patients should be encouraged to be vigilant with their diet and avoid all sources of known gluten or contamination which may occur during food preparation.
There are no studies examining what constitutes a safe daily amount of gluten in coeliac patients presenting with extraintestinal manifestations such as ataxia and peripheral neuropathy." (ncbi.nlm.nih.gov/pmc/articl...
Catassi seems to be the heavy name, since both EU and US seems to put their standards referring to catassi.
1/3 is a pretty heavy number. Stating "However, all patients should be encouraged to be vigilant with their diet and avoid all sources of known gluten or contamination which may occur during food preparation" is fab, but we need proper ingredients declaration for that to happen.
These are really good research links. Thanks for sending those through. I really thought I'd got this gluten thing nailed, but no where near. So much more out there in terms of hazards and information. I'm totally going back to school on it.
I shall read through these links, and prompt on any thoughts/questions. Thank you again.
Yes, those are some of the fundamental thoughts behind the standards set. Australia seemed to focus more on the poor participant who couldn't cope with 10mg of gluten.
I didn't find all of the studies. I think I have been reading about EFSAs thoughts about putting the 20ppm level, where their scientific body behind is covered. With the conclusion of it being not likely to give adverse reactions for most of the people with coeliacs or wheat allergy.
You can Google up testing of gluten free food too. Italy seems to be particularly keen on doing those things.
in reply to
Hi Hidden , it would be very difficult for CUK to support this when they are part sponsored by the codex wheat co's.
In the late 1990's you could Buy Juvela wheat starch in the US which was below 10ppm. When Juvela in the UK had 96ppm according to Juvale. But CUK had clung on to the old 200ppm and coincidentally they wanted 100 ppm and already had a voluntary one of 100ppm, which they boasted about when everyone else had voluntarily adopted the 20ppm limit recommended by codex in the 1990's.
And now we have 20ppm with toxic grains as long as they are below codex...instead of none of the toxic grains and below 20ppm. 🤢
I will of course support another petition as there are more of us diagnosed and we have more coeliac who are fed up not being able to tolerate food clearly labelled gluten free and displaying the cross grain symbol...to me CUK stands for Codex UK...😁
None of the toxic grains would be desired. Not even in additives.
I think we would be more forgiving if there's traces of gluten by mistake when all precautions have been taken, than having a feeling of being pushed to tolerate more than we feel capable of.
It still sounds better today than in 90s.
But I remember that additives used to state if where they were derived from.
I'm a pain in the ass. I write to companies asking about additives and complaining if affected.
Sometimes there's a change in their labeling. Those who ignore everything are usually those brands focusing on GF market.
Hi Suit , I think that we have a right to know exactly what we are eating and there are differing standards so they can do it on some continents.
Unfortunately part and parcel of being a coeliac is there is an innate fear of food its self preservation so a very natural emotion, now so this is doable but then when food aimed at 'us' makes us ill it is very frustrating as we cannot now trust the designated standards.
The upside for me is I feel very well on my whole food naturally gluten free diet. 😊
Ps here's an E list, if it says sucrose or starch that can be a wheat derivative like caramel acetic acid maltodextrin:
Yes, perhaps we have a right to get information upon requests. It sounds legit.
They probably figured that not many people would ask for it. 🤔
Thanx for the link to the list.
I have another incredibly red additive list due to dao deficiency. I know different things are OK for DAO VS gluten/wheat. So I'll cross the different additives out from my paperlist.
(like, no caramel color because possibly derived from wheat, and nothing with potassiumxxx because it's a histamine liberator)
in reply to
We just need a new representative body. I phoned Coeliac UK regarding GF beer that had the cross grains symbol but made me ill. They were quite militant in their assertion that it was perfectly acceptable, despite what I was saying. Spoke to their dietitian on another occasion who argued the toss that if something is labelled GF, it is - again completely negating what I was telling her.
I do wonder how many people working at Coeliac UK are actually coeliac?
I've emailed Kevan Jones MP. He was Chair of the APPG on Ceoliac which doesn't seem to have been around for a few years. Also asked if Coeliac UK sat on the APPG.
I've contacted Food Standards Agency to find a contact (although they seem to shunt complaints on food labeling to Trading Standards).
DEFRA had a review earlier this year on food labelling. I've asked for their report and if Coeliac UK attended. Also for any contribution to the review around gluten/hidden gluten.
I think the petition needs higher-level backing to offset the nonsense that is Ceoliac UK.
We have a 20ppm limit because historically testing below that couldn’t be effectively achieved. I suspect that is no longer the case but we are still saddled by a measure that doesn’t help many of us.
My gripe for a long time has been around the myth of gluten-free beer when it’s sourced from barley or wheat. Many of us will be giving ourselves ongoing damage assuming that we’re keeping safe and it’s wholly wrong.
Coeliac UK do seem to be stuck in a rut from the past and unwilling to look again at much of this. I’m not sure removing them is the thing to do but they’re ineffective as they are.
I agree with the GF beer. I've been nobbled by that. De-glutenised anything just sounds like a farce. Loads of people on online forums stating similar.
I'm reading about the crossed grain symbol... And this was new information for me, one of their points of being GF (they are following EU regulations of 20ppm)
"Prolamins are defined as the fraction from gluten that can be extracted by
40 - 70 % of ethanol. The prolamin from wheat is gliadin, from rye is secalin, from
barley hordein and from oats avenin."
I thought ELISA didn't work properly for alcoholic components. And that a lot of ethanol is derived from wheat? It says in same paper that:" The R5-sandwich-ELISA is not applicable for products
consisting of, or containing, fermented or partially hydrolysed gluten." but how correct is the competitive Elisa that they use for beer n stuff?
I believe that the gluten reduced beers traded as GF in the UK are a myth. Clarex and fermentation beat up the gluten proteins DNA but leave many short DNA segments which the tests can’t see. We know coeliacs are reacting to only specific parts of the DNA sequence not the whole thing. Coeliac UK need to wake up to recent studies in the US and down under but sit firmly on the fence at present.
I believe you're right. I've read somewhere that its quite impossible to destroy the core of gluten. One only breaks it down two or three times during those processes, like peeling off the top layers.
It's hard to believe that it can vanish like a ghost into thin air.
Thanks for sending these through. Honestly Australia seems ace for this. I think a coeliac colony needs to be established there. Worryingly they are now looking to consider a higher ppm level and have been consulting with Coeliac UK and the likes to consider something above 0ppm. No doubt it's driven by manufacturers. I've had a gluten reaction to a chocolate product by Noma - they market their product in UK, Australia and Canada - they fail though to indicate on the ingredients the source of some of the additives, e.g. inulin, which is required under Australian labeling law, so not sure how they are getting away with that as a marked GF product for Australian market.
The study showing 5 out of 8 breakfast cereals tested contained above 20ppm is astounding. I don't do GF breakfast cereals but people are feeding those to their kids and trusting the labeling and then probably being fobbed off by the GPs and dietitians who tell them that it's all in their imagination that they are still ill, or that they are intolerant to something else. Interesting that the US study shows buckwheat and lentils are worst culprits in their study for cross-contamination. Such a lottery.
I wonder if Coeliac UK run regular tests on GF products to spot check? The breakfast cereals at least would need checking based on the study results here.
I hope they will stick with their current standards in Australia. I must read their regulations on additives before they give them up.
Yes, it's awful to read about the levels found in GF foods. It's all in our heads. This is what made me more furious while knowing that they aim for GF foods to contain up to 20ppm
I can't eat buckwheat flour, but grains. I don't know why, it could have something to do with my enzymopathy, since buckwheat has a warning on it.
I don't know if UK has been doing any tests. It probably falls under EU then. But Sweden does once in a while, like beer and soy sauce.. 🙈. And some cereals.
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I have five autoimmune conditions and would appreciated help with these petitions:
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GF for a year and now allergy symptoms - have cut out corn, rice, soya and dairy
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