I am struggling to understand this labelling standard. If I have any traces of gluten I seem to react so quickly. Other people on this site also have problems. Although I try to eat everything from scratch sometimes I do want other ingredients or products. Also I would love the occasional wine gum but as these contain glucose syrup (as does most confectionery) they are forbidden for me. I am not asking about alternatives I just want to know why, and how, this standard has been established when clearly some people cannot tolerate this amount.
PS I have read the FSA website and other stuff but still don't understand
Written by
urbangirl
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Me too. I've no idea why the standard is the way it is.
I think it would be helpful to have two labels. Gluten free should mean exactly that... gluten nowhere near the product. Then you could also have "low gluten" or "trace gluten" where it falls under the 20ppm threshold.
Hi and I agree with both of you, I have always thought that it is because coeliac can get codex wheat starch on prescription in the UK.
In countries like NZ and Australia they have had 5ppm since the late 1990's And no wheat oats barley or rye so the 5ppm was to allow for traces through contamination whereas in the UK we are still told that malted breakfast cereals with less than 20ppm are within codex and safe.
Wheat deriv's no not have to be labelled as such in the EU but they do on other continents and why is this? so that the food manufacturer can change the source of say dextrose without having to change the labels. This is because they are considered as gf as they are very processed.
The prescription food companies were all owned by the Hero food group this included Juvela, Nutricia Dr Schar Trufree etc, they have been selling some brands but still have a majority control over gf foods and this gives them an influence over the coeliac society as we can get their food on prescription and they part sponsor them.
There was a lot in the press about the cost of 500g of codex wheat starch to the NHS at around £6.50 and someone posted that in Sweden it was 2.40 Euro's over the counter, which's around £2.00 and if this looks familiar
I think that the real problem with zero gluten is that we cannot test down to zero gluten and foods and processed foods are vulnerable to cross contamination in the manufacture and packaging. As is how codex alimentarius is interpreted, eg below codex or none of the forbidden grains and below codex.
Lastly I feel that coeliac need to stand up for them selves and tell the coeliac charities that these foods contain too much gluten and that we want change regardless of codex and I feel passionately about this, so I'll get off my soap box now LOL.
I am relatively new to all this so I am sorry if this is repeating previous discussions. Do you think this is irresponsible because many people accept the labelling in good faith - I did when I first got diagnosed but because I seem to be very sensitive I kept getting ill when I ate some foods. At least it was inconvenient - at the most it could cause me long term damage. Also at the time it was a mystery to me why I kept being ill. This was not helpful and I also felt a bit neurotic because I didn't have an explanation. Poing has a good idea about the grades of labelling. I think that would be very helpful.
Hi urbangirl, I had exactly the same as you when I was first diagnosed with some gf foods.
When I was first diagnosed there was a food demo in Bristol by one of the prescription food co's and I had only been diagnosed 3 days. At the demo there was a dietician and a gut specialist the gut specialist asked the dietician for her food list and said 'this is not your bible it is a nasty little book of lies that will make you ill and you should throw it in the bin' and he threw it in the bin! the reaction was of shock but I thought this is interesting. I had been eating a whole food diet so found the gf offerings to be much to processed for me so I decided to eat naturally gf foods and see what i could do for myself and I felt really well after 2 months and I knew that my anaemia was gone.
I was a single dad with a full time job so the thought of bread on prescription appealed to me so after I had, had a 2nd biopsy I got some for toast and I became anaemic again.
So the conclusion I came to was that the vast majority of UK coeliac go from a full on wheat diet to one with codex levels and feel better but how many have IBS and or have to take vitamin and minerals and how many could feel even better? that's what I wonder. To me the fact that I am a blood donor and give blood 3 or 4 times a year and they have told me that I am suitable to be a platelet donor speaks volumes.
Now Poings idea of low gluten food with up to 100ppm is allowed to be labelled as 'very low gluten' and the problem is this does not appeal to the majority of coeliac and food manufacturers have a broader market keeping to 20ppm and labelling the food as 'gluten free' Many coeliac eat supermarket own brand cornflakes with barley malt and gluten in the allergy box but they are listed with gf foods.
I think that the real big problem is that some coeliac are not very sensitive to low levels of gluten and there are coeliac who eat chip shop chips and they feel that Crunchy nut cornflakes used to be labelled as gf and didn't seem to make them ill so they still eat them.
So if you are an expert but not a coeliac and advising coeliac in the UK. Where we as a population eat more breakfast cereals per head per capita than any other country in the world, what advice are you going to give? don't eat any malted cornflakes or only eat malted breakfast cereals that are below codex? The free from cereals are much more expensive than the supermarket ones so the experts have a dilemma and keep to codex.
If I am honest I am an idealist and I would like to see gluten free mean exactly that with none of the forbidden grains and not have things like Branston pickle which say contains barley malt and classed as suitable for coeliac. We are one of the few countries in the world to be told that Marmite is gluten free when it is made with spent brewers yeast from beer making but again we eat more Marmite PHPC than any other country.
And if a UK coeliac went to NZ and told coeliac there that they ate malted cereals and wheat starch on their strict gluten free diet they'd think they were off their heads!
So what is the answer? I think that we the consumer have to be aware of what we are really eating regardless of whether we are coeliac and I'd like to see wheat derivatives labelled as exactly that. One of GFG members had a petition and Coeliac UK would not support it and I think that was a shame. I also contacted Coeliac UK and asked them why they did not flag Marmite as containing barley and they said they did not bother with foods at the lower end of codex.
In Australia and NZ they have 5ppm and none of the forbidden grains and they warn coeliac who do not recover about foods with traces of gluten like dextrose. Those who are wheat intolerant avoid low cal drinks, caramel colour E152b.c and d are wheat deriv's and citric acid can be but how many consumers know this?
I also have a scientific background and I know that 20ppm is 20mg per 1Kg and in 1mg of gluten there are millions of toxic molecules. So I read labels and listen to my body.
I'm sorry that this is long winded but I feel passionately about this and lastly I do not wish to offend any coeliac who is happy with codex.
Jerry
PS, what you have to understand about the FSA's comments on gluten free and wheat derivatives is these foods are codex gluten free and Coeliac UK say that wheat deriv's are so processed that they are gluten free, this is even if they contain traces of gluten because they are well within codex.
Thank you very much for your very informative reply Jerry. Given all the advice we are being given in the UK about healthy living, weight control, diet and sugar overload I am disappointed at this standard for gluten. This is because in my opinion the impact of eating food with this level of gluten seems to be overlooked. It is clearly bad for my health and I don't think I am alone. I do need to try to research this a bit more but I am not a scientist and find all of this quite complicated at times! However,one member of my immediate family who has a scientific mind tried to convince me glucose syrup was gluten free because of the information he read about it.
I was first diagnosed in 1955 by symptoms, in those days most foods were basic so the main exclusion was wheat. In 1962 I had a capsule biopsy and weaned back onto normal foods. Then in 2006 I was chemically poisoned five times as a result (my opinion because it is not clear why CD is triggered) I was again diagnosed with CD. Like many I had problems with the Gluten Free diet which at that time was 200PPM, so my questions started.
There is a body of scientists who make the food laws as part of the European Food Standards Agency (EFSA) their opinions are based on scientific tests on Coeliacs, those that react are removed from the results because tests are commissioned by ingredient manufacturers not doctors or coeliacs, if you should review the EFSA site putting gluten in the search box you will find that the safe for coeliacs ingredients do carry over traces of gluten, why some coeliacs react. The Food Standards Agency (FSA) go by what the EFSA's opinions are. The levels of Gluten Free @up to 20ppm is not always safe for the minority but is for the majority and Very Low Gluten @ up to 100ppm I have yet to see. These rules were written by Arianne Vanden-Strappen of the EU and because it is safe for the majority of coeliacs those who react to the very low levels have to accept what is happening. This is all done in the interest of the supplier not the end user which once a cure is found will leave an industry in collapse.
Thank you for your email. As I am responsible for the legislation related to gluten labelling at the European Commission, I was asked to answer to your request.
I understand your concerns and difficulties to deal with a condition such as celiac disease on a daily basis.
It is a fact that different people with intolerance to gluten may tolerate variable small amounts of gluten within a restricted range. In order to enable individuals to find on the market a variety of foodstuffs appropriate for their needs and for their level of sensitivity, it is important that a choice of products is possible within a restricted range.
As you may know, the removal of gluten from gluten-containing grains presents considerable technical difficulties and therefore the manufacture of totally gluten-free food is difficult.
The new legislation regarding food labelling you are referring to is Commission Regulation (EC) No 41/2009 which harmonises and establishes specific requirements according to which foods may be voluntarily labelled as 'gluten-free' (when the gluten content is not higher than 20 mg/kg) and 'very low gluten' (when the gluten content is not higher than 100 mg/kg). As you noted, the new legislation will fully apply as from the 1 January 2012. These new harmonised thresholds are much lower that the previous threshold of 200 ppm that applied in most Member States before the introduction of these new rules.
But let me refer also to the allergens labelling rules: Directive 2000/13/EC establishes a list of ingredients that cause intolerance and allergies and which must always be labelled. Cereals containing gluten are included in that list. If wheat, for example, is used in the production of a food and is still present in the finished product, then it must be mentioned in the list of ingredients even if the level of gluten is less than 20 mg/kg.
Consequently, the combination of these two legislations allows for appropriate labelling information and consumer protection.
I understand you have health issues even with amounts of gluten less than 20 ppm. The EFSA opinions you listed in your e-mail conclude that products such as wheat based glucose syrup are unlikely to cause an adverse reaction in susceptible persons. However, such considerations can never preclude individual reactions.
With kind regards,
Ariane Vander Stappen
Ariane Vander Stappen
Unit Food Law, nutrition and labelling (E4)
Foods for particular nutritional uses 'dietetic foods'
This is a fascinating discussion and I'm grateful to those who have replied at length above. I find I react to "GF" foods in different ways. For example I am fine on Marmite but I cannot tolerate Branston pickle at all.
I do think the 20ppm threshold is both arbitrary and dishonest, and threw my Coeliac UK book in the recycling bin after only a few weeks. Apart from anything else the indexing and layout is frustrating and moronic.
The idea of differentiating labelling by using "less than 20ppm" or "zero" is an excellent one.
3. It is a bit tricky to accurately test for barley hordein in food. One assay, the sandwich omega-gliadin ELISA, severely underestimates gluten from barley, having a cross-reactivity of only 4 to 8%. Another assay, the sandwich R5 ELISA, overestimates gluten from barley by a factor of 2.
I became suspicious of marmite as I kept getting mouth ulcers after eating it and once I knew it was made from spent brewers yeast found out that the marmite factory is very close to the Bass brewery for a reason.
Jerry
PS, as they cannot prove zero gluten, I'd like to see gluten free mean none of the forbidden grains and undetectable gluten with 'codex gluten free' for products up to 20ppm which looks clear and simple to me.
I realise that tests for gluten can't measure zero (actually this is a problem for loads of medical tests, including those for antibodies) but if a product is made from ingredients that are naturally gluten free and not commonly cross contaminated and the production process does not use anything containing gluten, then it would earn the label.
If any product is made from a gluten source then it should be declared instead of all the fancy names for derivatives ie Maltodextrin, Glucose syrup then the consumer has a choice. There should not be a market for a condition that has so many variations that contains an ingredient known to make susceptible individuals ill. To say it is safe for Coeliac's should be illegal unless its not from a gluten source.
Yes Jerry the Bass Brewery down the road from Marmite is now called Coors.
Thanks Jerry, those links are very informative. I still wonder how I can be OK on humongous amounts of Marmite (my idea of a portion is rather larger than theirs!) and yet cannot tolerate any amount of Branston. Is that to do with the molecule size?
Hi DartmoorGuerrilla, I get mouth ulcers if I eat Marmite but with pickles like Branston I get a head ache and upset stomach so I think that the brewing process reduces the amount of gluten in Marmite.
When the new labelling laws were announced I contacted Marmite and asked if it would have to be labelled as very low gluten when the laws changed and they did not answer, so I asked them again and they again did not answer.
This is what Heinz say about the term 'gluten free' around the world!!!
''Regulation of the term gluten-free varies by country therefore cannot be claimed for similar products sold in different locations.''
Bonkers if you asked me as gluten free should mean just that but what do i know I'm just a coeliac LOL.
Jerry
in reply to
Mouth ulcers and Marmite seems an odd combination - my dentist used to recommend Vitamin B (or brewer's yeast) to help when I used to get mouth ulcers. This was many years ago - when young and not coeliac.
I've now given up Marmite as I was told - from a usually reliable source - reckoned it isn't safe.
in reply to
Hi Claudio, many coeliac get mouth ulcers when they have eaten gluten and marmite is made from spent brewers yeast. Please see:
Thanks Jerry and Pretender. Now I am cynical too. If the standards are set in the interests of suppliers then this is not in the interests of all people with coeliac and NGCS. Why can't we adopt the standards set in Australia and New Zealand as they appear to be more in our interests?
As far as I can see, Coeliac UK has a massive amount of support, probably of the financial variety, from companies that sell GF replacement foods. Have you seen the advertising in their magazine? If suddenly half of these foods were not acceptable to coeliacs, then the organisation would lose a lot of sponsors/advertisers. So unfortunately, I dont' see Coeliac UK changing its position on what GF really means.
If you can tolerate ALL of the gluten Free diet then Coeliac UK will cater for you, what I find totally unacceptable is to class all Coeliac's the same, there might be the minority who cannot tolerate ALL the foods but it is wrong for any any organisation to give the impression that they represent ALL Coeliac's. Gluten is Gluten end of! There is big money to be made by the suppliers, the switch from derivatives in foods does show that even the suppliers have wised up to what it does. The switch to E464 'Hyrdoxypropylmethylcellulose' will bring about other problems.
I abandoned the coeliac UK organization when I posed a similar question to them about labelling of GF products. I proposed a 'traffic light' method of identifying glutenised products: green for zero, orange for 0 - 20, red for up to 100ppm. They replied it was impossible to do this as all coeliacs could tolerate up to 20ppm without difficulty so there was no need. They backed up their response by highlighting the fact their stance was supported by doctors and scientists and therefore they were beyond questioning.
I came to this site as I needed support for what I believed was an unusually low tolerance to gluten: that is an inability to tolerate anything at all, including wine as it's often been finished with wheat (although ELISA tests say it's about 5ppm), ciders as they are 4ppm (the ones I liked anyway...booo), and obviously anything containing fructose (though that took me a while to realise!!). What I found here were many people who had a similar or worse intolerance. It seems that many people are (if they follow the medical advice) being poisoned by those who should be supporting us.
If the current tests indicate residual fragments or proteins of gluten then it cannot be accepted that it is in the real world as "Free of Gluten" but yes legally "gluten Free" by todays legislation..
Quote"They replied it was impossible to do this as all coeliacs could tolerate up to 20ppm without difficulty so there was no need. They backed up their response by highlighting the fact their stance was supported by doctors and scientists and therefore they were beyond questioning". Not supported by some Coeliac's!
That is why if you are one that cannot tolerate the very low legally permitted levels of gluten they abandon you, not profitable. It also shows they only cater for the majority not ALL Coeliac's, if ALL coeliac's can tolerate it why are so many now saying that is a false statement. I speak as a twice diagnosed with a 45 year break both times totally free of Wheat (gluten) and the others. This is a debate from a cross section of coeliac's with different sensitivity levels not suppliers.
My mum's also coeliac, but eats everything in the Coeliac UK book. Over the years she has developed several very serious auto-immune disorders on top of Coeliac, balance trouble which no-one can explain and she is now suffering from her third (and this time terminal) cancer. Throw. the book. away.
Thanks all. Maybe all of that would have happened anyway, but if there's a chance I (and all of us) can choose a different route, then not having sandwiches and being a total pain for friends to cook for/eat out with seems a very small price. My mum's in a temporary remission and doing lots of hanging out with grandchildren :o).
The CUK-faithful coeliacs I know in England get quite antsy when I tell them that Coeliac Ireland is (still on the 20ppm) limit strict on things like spice, dried fruit, brands of rice, tinned tomatoes etc. It would be very hard for CUK or any organisation to backtrack or redraw its guidance when so many coeliacs want to replicate the processed diet they had before diagnosis. I'm still finding my way with my reactions to different ingredients, but the lack of clarity, and the lack of openness about the effects different people have is frustrating.
I am also confused by the 20ppm and when I recently asked what long term studies had been carried out to ensure that 20ppm did not start an autoimmune response in coeliacs and end up in further damage, I was told that it was too early to tell. I know I have a response so I eat nothing with barley malt, codex wheat etc and stick to a natural gf diet but many people had very little response anyway but their villi were damaged on biopsy and I am assuming that none of us are having regular
biopsies, so where is the scientific evidence that 20ppm is okay. And if there is no scientific evidence why are the coeliac societies saying it's okay. They are even trying to change to 20ppm in Australia . Plus I must be unusual but I don't find myself craving foods that I had before like cakes, biscuits and pies. I do feel that we need a clearer system, 3 weeks ago I was glutened by a mug of Tetley's green tea which I hadn't even considered might have wheat in it.
The answer to your question lies with the European Food Safety Authority (EFSA) if you go to their site and put gluten in the search box you will get your answers. Should you carry out further research by looking at who carries out the research you will find it is the manufacturer. As far as I understand it anyone who reacts to levels below 20ppm are excluded from the final results. This is an industry not an illness based diet.
Oh dear - I can understand all sides of the argument (yes, there are more than two).
The major difficulty for me is that gluten-free seems to be viewed as a binary issue: there are two options. I get the impression that some people are more sensitive than others - and why not? With other issues people react differently, so why not with gluten. Maybe what is safe for some is not safe for others - and that makes life tricky.
Inevitably, people become a bit evangelical and try to get other people to follow their view. Maybe I'm less sensitive than other people (that could be true in so many ways...). it's for this reason that I like the approach that a couple of posters have suggested of a system (traffic lights etc) which gives you a clue about what you might be about to eat.
Across this community there are lots of examples where some people have a reaction and others don't - it doesn't mean that one or other is right. Both may be right.
Zero gluten may be some people's option but it doesn't mean that 20 ppm isn't safe. Lots of foods have low levels of things that may be unsafe in larger quantities - arsenic, for example - it's knowing both (a) what is safe and (b) what works for us that is important.
The key point that some have raised - that the current system is based round the needs of suppliers - is spot on. Like others, I think Coeliac UK is out-of-date and needs to change its way of working. It seems to me to be an organisation that is reactive rather than a force to be reckoned with.
Claudio of course there will be different aspects to consider but surely it is important to err on the side of caution? The current system clearly doesn't - causing difficulty for people. I know quite a few people who have coeliac or NCGS - some who have problems with various products, who are not members of this site. So in all probability there are lots of people who have little information on labelling and maybe causing themselves harm. I could not understand why, when I was eating gluten free I still felt ill. Now I know why this is the case and obviously avoid the products. It takes a while to get things together and if labelling had been clearer that would have helped me in the beginning. Fortunately people on this site advised me. I have learnt such a lot on here, I don't feel an idiot for asking questions and really appreciate the virtual friendship!
The difficulty is that 'erring on the side of caution' may mean that for many people they will have items on a 'banned' list that don't cause them problems. I suspect that there is no single 'safe limit' that applies to everybody so we need accurate information that enables people to make an informed decision. There can never be a perfect system.
The lack of transparency about why 20 ppm is seen as a safe limit worries me slightly. Why choose 20 and not 25 or 50? If we understood more about that, it might make the discussion easier. I'm willing to go with the 20 ppm for the time being - when I cut out other stuff my health improved massively. Antibodies and endoscopy also suggest no problems for me - but I do understand that other people may have more serious reactions. The trick is how we manage a system that needs to accommodate all of us.
The real issue is that I don't think there is a one-size-fits-all solution for coeliac disease and gluten-free. From personal experience I think some people put everything down to coeliac disease when it may not be the issue - typically "I'm ill therefore the nuts must have had gluten" rather than "I'm ill because I drank way too much last night".
And spot on about asking questions - it's only a stupid question if you don't want to hear the answer.
Yes we are all different and I am surprised at how I react, or don't react to some products. I couldn't comment on other people blaming coeliac when it might not be. I only have my own experience and I am pretty sure I have been glutened when I have been ill and also I know when certain foods hurt me. However, the question remains - why can't we have the same labelling as in NZ and Australia?
Before the change in legislation the view was the same, 200ppm was safe for Coeliac's and no one reacts to it. Now it is at 20ppm Coeliac's are still saying they react to it, not all but some. The safest labelling in my opinion is not as confusing as current legislation. 1.0 Gluten Free should mean not from a gluten source. 2.0 Very Low Gluten up to 20ppm of Gluten per kilo. 3. Medium Gluten up to 100ppm. 4. High Gluten over 100ppm. The strict gluten free diet means gluten totally excluded from the diet. The Gluten Free diet is not the treatment for the condition but for those who can tolerate it which is detrimental to those who cannot and is also very misleading and dangerous for some, myself in particular.
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