After some lengthy discussions with food manufacturers on why their gluten free foods were making people ill (in knowledge that 20ppm codex not for everyone), I made the interesting discovery that not all foods labelled at GF are even tested for gluten.
Wah????
So, Coeliac UK website states this: "From 2012, manufacturers have had to comply to a single threshold standard that is regulated by law, which means that a 'gluten free' label can only be used on products which meet the terms of this law." The single threshold standard is the 20ppm or below.
However, I've been told by a manufacturer that they are NOT required by law to actually test the product for gluten before labelling it GF, and can do so on their own decision that their product is gluten-free and safe, based on their own knowledge of their supply chain/assertion. To quote one such manufacturer: "As advised by the Coeliac society ‘The law does not specify that tests have to be done to prove foods are gluten free, but recognises that good practice will involve testing.'". I'm assuming they mean CUK when they refer to the coeliac society.
So, this, from my perspective, is a massive relevation - codex 20ppm does not have to be formally tested for when a product bears a 'gluten free' label and testing is only deemed 'good practice' not actual legal requirement for labelling GF.
I'm starting to think it's like Alice down the rabbit hole. What is any of this GF product melarkey actually about if 1) we can't trust the ppm codex; 2) and no one actually has to test for it? Every day gets more bizarre. You do right to only cook your own.
Hi Ben, testing is required if the manufacturer wants to use the crossed grain logo. This also involves an extensive audit of the premises, processes and practices, along with paperwork. If you don't want to put the crossed grain on your product, you can, or rather should, validate your own processes and cleaning schedule to ensure it is gluten free. Otherwise , there is no defence if challenged by a customer who claims the product made them ill.
Thank you for that. That's good info, and not something I was aware of. Ok, so now I really don't trust any product with gluten free on label. How can our laws be so free and easy? This is a mega gap in the stingency of ensuring individuals do not get ill. They might as well just not even bother with the 20ppm codex law as it just seems to be whatever you want. Not good enough. Thank you for your answer again.
Compliance in the food industry is very strict at the moment (after Brexit, who knows?). An auditor will look at how the gluten free status is maintained and tested in house. Often there is time separation, so GF products are made at the beginning of production, gluten containing product coming later followed by a thorough clean down and swabbing (test) to ensure gluten has been removed. Alternatively, some factories have no gluten containing ingredients at all like one I used to visit in NI.
It doesn’t get better. I was told by a ‘good’ consultant the other day that barley malt vinegar should not have any effect. This despite my saying it made me really ill and that I am a sensitive coeliac with dermatitis herpetiformis. There’s just so little understanding of or empathy for people who are sensitive to trace gluten
Was that an NHS consultant? FFS. It really is just a form of mental and physical abuse to coeliac sufferers - late/no diagnosis, gaslighting, negating, sub-standard offerings. This is why few ever get healthy properly. I'd write to that consultant and show that no other country in the world allows barley malt or malt vinegar other than UK. Even in US where standards hit and miss, malt barley and malt vinegar are banned from GF products.
I totally agree with what you say. It’s one in a long line of such comments for me. When I was first diagnosed, I was kept ill by poor advice about what contains gluten. Then, when my antibody levels didn’t come down, they accused me of eating gluten. FFS. And they just couldn’t see the irony of that.
I am actually thinking of writing something about this for the consultant and mentioning the effect that denial of patients’ experience has on us. This consultant does NHS and private. I saw him privately because the NHS consultant I saw a few months ago had absolutely trivialised coeliac disease (or ‘coeliacs’ as he called it), despite the fact that I was there for microscopic colitis as a complication of coeliac disease. I don’t know what we have to do to get through to these people. He told me he had been unable to understand another consultant who cried when she was diagnosed with CD. I gave that guy a little lecture about what it’s like to be unable to eat food spontaneously, travel safely to anywhere we don’t speak the language, have to tell people before anything else that we have an illness, etc etc. He did look a bit surprised
They really are the most arrogant and disengaged humans. One would assume empathy is a natural part of being a doctor - sadly not. Coeliac effects every bit of your body, literally. Research shows brain/neurological damage, through to bone loss, joint damage, susceptability to certain cancers, so on, so forth. And that's before, as you say, you have to face reality of social and life limitations. Do write. The more people who undertake that excercise, the more attitudes will change. I've done it earlier this year with a consultant who told me she has patients who would love to be in my position on not being able to put on weight and having such a (by no choice) healthy diet. No one needs that emotional victim-blaming bollox. Few other illness seem to get this abuse (to my knowledge).
Hello Hidden another bone of contention is there are 2 ELISA codex tests for wheat gluten and these give very differing results with malted products as they are specific for wheat!
So a malted breakfast cereal could be way over 20ppm and yet test as under.
I think that having allowed levels of gluten in gluten free food is the problem and even if we can’t test to zero ppm we can test to 3 ppm.
I have family in NZ they have none of the toxic/forbidden grains and 3ppm plus they have to label wheat derivatives that are below 3ppm like dextrose. And do you know I can eat everything clearly labelled as gluten free in NZ and Australia where as in the U.K. I’m some sort of freak who can’t tolerate allowed levels of gluten.
I am very wary of the crossed grain symbol in the U.K and see it as a warning so read ingredients and avoid many packaged or processed free from foods.
I will tell you why U.K. / EU food manufacturers don’t have to label wheat derivatives as such and that is so they can change the source of their derivative without having to change the label. This is according to the FSA.
Remember if it’s got gluten in it it isn’t gluten free regardless of the label...
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Thank you Jerry. It really is just fighting a tide of idiots in trying to get the standards where they need to be for health, not where manufacturers need them to be to turn a profit. It is frustrating that 1) we have to live within these dire standards; 2) most people find out by themselves/from forums like this what the true meaning of GF is in the UK; 3) when individuals do not regain health they are then gaslighted by CUK and clinicians. CUK are 'aware', but clinicians not as they are already underresourced in knowledge for Coeliac/gluten and CUK in no rush to get them better informed; 4) manufacturers breaking the law with the fast and loose standards of not even having to batch test products before labelling GF, and then burying their heads in sand/giving silent treatment when found out.
That is very interesting about the ELISA test having two types. You have a lot of knowledge that is invaluable, and are very well researched.
It really begs the question as to if there is research showing recovery rates on coeliac from country to country, where the UK fares in that, and if much of the research being done by CUK on 'refractory' coeliac is money being thrown at gaslighting research to cover-up the issues on the ppm/hidden gluten.
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When I was first diagnosed I kept being made ill and was told by CUK that there was no deference between my zero gluten diet and their then 200ppm gf diet with wheat oats and barley below this labelled as gluten free, so I pointers pout that theirs contained gluten and made me ill and mine kept me safe.
Here's a link about testing hordein the gluten like protein on barley:
I think that the real problems are because if we can get wheat on prescription that has had the bulk of the gluten removed then similar amounts in oats and barley are deemed safe.
Coming from a scientific background I fail to see that below 20ppm eg 19ppm is totally safe when 21 ppm is toxic and carcinogenic.
The way I see things are that its not my fault that I'm a diagnosed coeliac and it's not my bodies fault that I cannot tolerate any gluten. I'm a coeliac and gluten makes me ill full stop and we deserve support in the UK especially as we have the biggest coeliac society in the world. As I feel totally unsupported as a UK coeliac and thats a fact.
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Totally agree Jerry. And worse than unsupported, we are actually exploited for purpose of profit by both CUK and the manufacturers mining the gluten free market.
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