Welcome to 2012 and 20ppm: defending the new coeliac standard for gluten free

You’ll be aware that new Codex standards concerning the labelling of gluten-free and low-gluten foods came into force on the 1st January – although in practice most manufacturers have been compliant for some time. In a nutshell, food products containing and testing at no more than 20ppm gluten (20 parts per million) can be labelled ‘gluten free’ – and those falling between 20 and 100 as ‘very low gluten’. Untested products without ‘gluten-containing ingredients’ can state as much – but no more.

Why 20ppm? I don’t have the scientific nous to dissect the studies and crunch the statistics in this post, and if I tried to it would probably induce a breakdown. But from what I can see from this study, which summarises (on page 6) findings of the few other studies in this field, there is evidence to suggest that up to 10mg of gluten a day is safe for the majority of coeliacs (but not all coeliacs – and I will come back to this later). This appears to be agreed upon by a consensus of the world’s top coeliac experts such as Alessio Fasano, whose open letter on the matter seems reasonable and well thought-out.

In order to take in 10mg daily, you would need to consume 500g of food at 20ppm every day. This is unlikely, but possible, and the Center for Celiac Research showed here how that might break down.

There is an important point to make here, though: in practice, foods’ gluten content will fall lower than 20ppm, some considerably so. This is because testing at these ultra low levels carries a margin of error, and in order to ensure a sub 20ppm result, manufacturers must in practice aim for quite a bit lower. Gluten free food often tests at 6-8ppm, thus making it unlikely you’d consume 10mg a day in this way.

Online, there’s been quite a bit of dissent about the new legislation.

Some are arguing that gluten free should mean zero gluten. We don’t have the technology to measure to 0ppm, so foods cannot be tested and confirmed to have zero gluten. Nevertheless, I’ve seen arguments put forward that only naturally gluten-free food should carry gluten-free (ie zero gluten) labelling. But that’s unworkable and seems perverse: we can’t test for it, therefore we can’t guarantee it, and it is effectively arguing against any form of testing for gluten-free food.

Wise coeliacs know – and need to know – that fruit, veg, meat, fish, dairy products, nuts and seeds are gluten free. Do you think they should be uniquely labelled as such? Would you also propose putting a nut-free label on a grapefruit or a milk-free label on a fillet of salmon? Zero-risk guarantees are impossible in the context of everyday living: an apple sitting on a shelf may carry a few microscopic particles of flour if there’s baking going on in another part of the supermarket. On the molecular level, this trace contamination is impossible to avoid.

The compromise is to have ‘gluten free’ mean ‘no detectable gluten’ – which stands at, I think, 3-5ppm according to the best detection methods. This is what Australia and New Zealand have at present – although the Australian Coeliac Society is asking to be brought in line with Europe.

The argument against this is that the threshold is needlessly strict, and difficult for many manufacturers to achieve. Just because we can measure this level – doesn’t mean our cut off point should be at this level, as Fasano argues. Manufacturers will be put off entering the gluten-free market, and as most coeliacs will tell you, they want more options, not fewer. It will probably also lead to more product recalls, not to mention increased prices and poorer quality products.

Passion vs dispassion
This is an emotional issue. Many have suffered years of non- or misdiagnosis, not to mention relapses and painful glutening episodes. Friends and family may not have always been understanding and sympathetic. There are relentless social difficulties in managing a gluten-free lifestyle. It’s bloody hard and every coeliac knows it.

But when it comes to matters of health and science, emotion cannot be allowed to dominate decision-making processes. It must be dispassionate.

As understandable as it is, a lot of the reaction against 20ppm I’ve seen has been emotional.

“I want no gluten. Coeliacs need no gluten.” Setting aside the fact that we can’t measure no gluten, specialists know that all coeliacs have a threshold and can tolerate a minute amount of gluten, which varies from person to person. As any toxicologist will tell you, it is a question of dose. Not only is zero gluten not a feasible practical option – to the best of our knowledge, it is not necessary, and disputing that is an emotional not scientific response.

“Gluten free should mean gluten free.” I think this too is an emotional argument. There is a precedent for ‘free’ to mean ‘almost but not quite free’ – alcohol-free lager can contain 0.05% alcohol, eg, and I understand it is a similar situation with cholesterol free, sugar free, calorie free, decaffeinated products and others.

To those against 20ppm, I would pose this: for whose benefit are you arguing for? It’s a sincere and genuine question. Your own benefit? The benefit of all coeliacs? The benefit of 95% of coeliacs? Which is it?

This is a very important question which anyone who disagrees with 20ppm ought to be clear about. Because, as has been pointed out, lowering the threshold will cause problems (limiting product availability, raising prices etc) which will hit many coeliacs quite hard, and may increase non-compliance with the GF diet among large sections of the coeliac population.

It’s a tough, harsh fact of life that we can’t please everyone, everytime. I was at a talk at Leatherhead recently on food allergens (the write-up is on the FoodsMatter.com site) at which the Food Standards Agency’s Dr Chun-Han Chan pointed out that thresholds for other allergens (nuts and peanuts, perhaps most importantly, but others too) were being developed. None of these will be zero. As Dr Chan said, the aim is not to protect every individual on every occasion against any possible reaction, but to manage overall public health as best possible. ‘Free from’ will translate to ‘no mild reaction in the vast majority of individuals’ – vast majority being 95-99% of people.

Tough decisions have to be made in order to move forward in healthcare – for instance, on the value and cost of certain drugs in relation to NHS budgets and the economy. We simply cannot do everything, for everybody, in every conceivable situation. Therefore, decisions must be made to benefit the most people – and on that apparent basis 20ppm has been agreed upon.

The ultra sensitive
Upstream I said I’d come back to the issue of acute sensitivity to gluten. The first thing I’d say is that unless confirmed by your gastro, I’d urge ultra-sensitive coeliacs to be open to the possibility that they could be reacting to another ingredient or substance, if only because it’s impossible to know the precise level of gluten in any food. I don’t know of any coeliacs who have a scientifically tested numerical value on their threshold, and while coeliacs doubtlessly understand their bodies very well indeed, there remain other possibilities (such as sugars in wheat starch, other intolerances, IBS) which I examined a little in my coeliac book and which could potentially mimic glutening symptoms.

The second thing is that, if you are or feel you are acutely sensitive to gluten at extremely trace levels, then it must be bloody tough and I can’t imagine the difficulties of it at all. I’m aware it seems heartless of any pro-20ppm’ers to be supporting this figure if you literally and metaphorically cannot stomach it – but I hope that you’ll understand from what I’ve said above why it seems this level has been set.

I expect it will feel a harsh decision to some, hence the emotion: ‘But what about me?’ Yet the further tough reality is that if we indulged in endless ‘whataboutery’, then we’d end up with no labelling regulations at all – and that would put us back to the sixties and seventies. For instance, what about people with mushroom or kiwi or strawberry allergy, for whom an allergy alert box is useless and whose allergy is not covered in the alerts the allergy charities send out? What about people with other dietary needs? Those with PKU, or favism, or gout? Or who avoid certain foods due to religious reasons?

As the experts acknowledge, we could do with more studies to better understand the picture of safe gluten thresholds. But there are ethical concerns here. Let’s face it, would you be happy to submit to gluten micro-challenges every day? That’s what science needs to get that clearer picture, and giving coeliacs measured quantities of gluten isn’t without its obvious problems.

If only in the interests of balance, there is what seems to be a very well thought-out and dispassionate counter-argument which you may like to read. I’ve briefly looked at it and not yet unpicked it, but I hope to find the time to do so in the future, and I may repost when I’ve done so, and taken on board any comments that follow here. It’s on the Ultimate Gluten Free site here.

In summary…
Perhaps ultimately it just comes down to who you trust, and I guess I trust the scientists and the coeliac bodies.

Here’s a concern. I fear for newly or recently diagnosed coeliacs. I’m worried that all the impassioned and occasionally alarmist talk on Twitter and blogs and forums about the need to eliminate every last trace of gluten and recommendations to avoid wheat-based glucose syrup and other gluten-free ingredients and the dangers of Codex is merely confusing already struggling new coeliacs, and potentially restricting their diets to detrimental levels. They are the most vulnerable.

It seems to me – and I admit this is just my own experience – that the loudest voices in this debate appear to be well-informed and often highly gluten-sensitive coeliacs who largely cook for themselves from scratch, maintain a high degree of health, and don’t rely much, if at all, on rendered gluten-free ‘free from’ foods.

I’d like to hear from others, from those for whom these foods represent a literal lifeline – including parents of coeliac children. Sometimes coeliacs write to me directly as they’re too shy or nervous of posting a comment publically on this or another blog: some are wary of challenging fundamentalist views and no longer know what to believe. We need to bear this in mind: not everyone is using their voice, and some of the stuff out there in webland (an alarmist video which I refuse to link to springs to mind) cannot, I’m sure, be helping the people who most need sane and evidence-based advice.

The best allergy-related food labelling there is in the world is for gluten. It beats nut, peanut, milk, egg and fish (which, remember, can kill) hands down. It’s remarkable we’ve got this far in a relatively short period – be aware that African and Asian countries don’t have anything that comes close – and it’s worth remembering too that the way we do it is not set in stone: if evidence is found to support a need for a lower gluten-free threshold, it will surely be considered.

You may not agree with it, but at the very least, a move from 200ppm to 20ppm is an enormous step in the right direction. That, at a minimum, cannot be denied.

35 Comments

  1. Siân

    Alex, a well reasoned and factually balanced post. I agree with the comments about increasing the limit of testing (even if it were possible to test to 0ppm, which it's not) would push up prices for gluten free goods and reduce their availability. This is indeed the opposite of what the majority of Coeliacs want.

    I know from the Twitter feed that this is a very emotional subject for Coeliacs but I agree that people need to take the emotion out of their response to the new law. Everyone's tolerance and reaction to ingesting gluten is different and so people need to make decisions on what they personally can / can't eat based on their own body and on understanding reliable research on the subject, such as Dr Fasano's.

    Personally I welcome the change the gluten free labelling law from 200ppm to 20ppm, although I am unclear on how compliance to the new labelling law by food manufacturers is enforced or policed (perhaps another story!). As someone who doesn't have time to cook every meal from scratch, I need to rely on buying shop bought gluten free bread, pasta, crackers etc in order to supplemnet my diet of naturally gluten free sources of food. Otherwise my already limited diet would be even more restricted.

    Reply
  2. freefrommum

    As a parent of a daughter recently diagnosed as coeliac I welcome the new labelling laws whole-heartedly. I also have a son with life-threatening multiple food allergies and I therefore find some of the rather emotional (dared I say extreme?) comments by some in the coeliac community hard to stomach (no pun intended). I would obviously be extremely upset if I gave my daughter something that made her feel unwell because it had gluten in but knowing that it wouldn't kill her gives me the confidence to allow her to take calculated 'risks' like eating out or eating something that may contain 20ppm. I can't allow my son to take these kinds of risks and this means that his life is often very limited by his condition – something I'm grateful my daughter doesn't have to endure. In the world of allergies and intolerances, coeliacs are definitely the best catered for in my experience. Many restaurants now offer gluten free alternatives but I've yet to find a restaurant that offers dairy and egg free alternatives.

    Reply
  3. Alex G

    @ Sian – thanks very much. I'm also unclear on the enforement or policing of it, and have been further thrown (as several of us have) by Coeliac UK's FAQ #6 here: http://www.coeliac.org.uk/gluten-free-diet-lifestyle/the-gluten-free-diet/law-on-gluten-free/law-on-gluten-free-faqs – which suggests testing is not required. But yes – another post and subject altogether! I'll try to come back to it! Thanks again.

    Alex

    Reply
  4. Alex G

    @ Freefrommum – thanks very much for your honest comment – I really wanted to hear the perspective of some parents so am glad you posted. I guess with regard to dairy/egg free restaurants the best bet would be a vegan restaurant, but they're hardly on every corner, and not all may be especially kid-friendly. I hope the thresholds for other allergens, when they come in (I guess) a few years' time, will help a bit. Thanks again.

    Alex.

    Reply
  5. Jen Brown

    Here, here! Great, well thought out post. 20 ppm is an appropriate and reasonable standard.

    As an American living in the UK, I just wish the US Food and Drug Administration would get it together and finalize the 20 ppm gluten free standard in the US. Right now there is no legal definition of "gluten free" there. I also wish that US food labeling were as good as it is in the EU. In the US wheat has to be listed as an allergen, but barley, rye and oats can slip by in the guise of "natural flavors" and other vague ingredients. Celiacs in the EU are blessed.

    Reply
  6. Alex G

    Thanks, Jen – yes, hope the situation soon gets resolved in the States. It's long overdue.

    Reply
  7. John

    PART 1.

    Alex,

    As you know, I have a contrary opinion. I present part of the reason for my opinion herein. Rather than addressing every point you make, I address a core argument used to support the view that 20ppm is acceptable. I will provide a wider argument for my opinion by way of an article on my website in the coming days.

    For openness, I acknowledge that I am a diagnosed Coeliac and consider myself to have a high level of ‘sensitivity’ to ingested Gluten. As such, I accept that I may fall into your “passionate” category. That said, I have formed my opinion based on experience(s) and knowledge gained while living a GF lifestyle for the last 38 years and also from the examination and analysis of various studies, reports, and views expressed by those considered to be experts in the field.

    I refer you to the Catassi et al report – “A prospective, double-blind, placebo controlled trial to establish a safe gluten threshold for patients with Celiac Disease”. This report is considered to be a foremost study of the subject and is the basis for many of the responses to the USFDA requests for peer review of its own report “Health Hazard Assessment for Gluten Exposure in Individuals with Celiac Disease: Determination of Tolerable Daily Intake Levels and Levels of Concern for Gluten”. To my knowledge, Catassi was also cited as part of the Codex Alimentarius review process for the new standard. You also refer to Catassi in your article as a basis for your position.

    The Catassi study was designed to be a prospective, double centre, placebo controlled, randomized trial on 49 adults with biopsy proven CD who were being treated with a GF Diet for a period not less than 2 yrs. It must be noted that in Catassi, the effects of Gluten in the diets of children diagnosed with CD was not investigated. Over the course of the trial, 10 participants were withdrawn, meaning only 39 people completed the trial. Of that 39, 13 were given a placebo daily for 3 mths, 13 were given 10mg of gluten daily for 3 mths and 13 were given 50mg of gluten for 3 mths. In effect, this means that the trial considered a mere 26 diagnosed Coeliacs who were given dosages of either 10mg or 50mg of gluten daily for a period of no more than 3 mths. The reason for limiting the trial to a 3 mth period is cited as “for ethical reasons we had to limit the duration of the microchallenge to 3 months, but it is well known that mucosal deterioration may become manifest after a longer gluten challenge”.

    To be continued….

    Reply
  8. John

    Part 2

    You state in your article that “But from what I can see from this study which summarises (on page 6) findings of the few other studies in this field, there is evidence to suggest that up to 10mg of gluten a day is safe for the majority of Coeliacs”. Several matters arise. In the first instance, I do not accept that the report states or implies that “10mg of gluten a day is safe for the majority of Coeliacs” and it is my opinion that “suggestion” should not be considered as PROOF that any level of Gluten is safe for Coeliacs. Further, Catassi clearly demonstrates that WITHIN THE LIMITATIONS OF THE TRIAL, 50mg of gluten/d was shown to cause SIGNIFICANT damage to Coeliacs, while NO LIMIT WAS FIRMLY ESTABLISHED as safe.

    “we showed that 50 mg gluten/d, if introduced for 3 months, were sufficient to cause a SIGNIFICANT decrease in the Vh/Cd index in treated CD patients.” (p5).

    Note: Decrease in the Vh/Cd index reflects the damage induced by traces of gluten in the diet. (p5).

    Additionally, “Because of the limited number of patients we were not able to reach firm conclusions about the potential toxicity of 10mg gluten/d which remained a GREY area.” (p5).

    Importantly, in the conclusion of the trial the authors state “the sensitivity to trace intakes of gluten showed large patient variability, a feature that should be accounted for in the implementation of a safe gluten threshold” and “these findings should be confirmed by further studies in larger numbers of CD patients” and “Finally, the relation between the intestinal damage induced by trace intakes of Gluten and the long term implications of Coeliac Disease remain to be elucidated”.

    In a nutshell, the most authoritative report used to support the core argument for 20ppm is based on a trial in which a mere 26 diagnosed Coeliacs were given 10mg or 50mg of gluten per day over a mere 3 mth period found that participants in both groups demonstrated various levels of detrimental changes. Further, the authors of the report applied various caveats that appear to be ignored by many of the commentators using this report.

    Re: the open letter of Prof. Alessio Fasano, – the letter may “seem” “reasonable and well thought-out”, my opinion is that this is not the case. I will provide more on this as part of my article.

    I do agree, in totality, with your final statement that “You may not agree with it… That, at a minimum, cannot be denied.”

    Regards
    John.
    Twitter: @gflivingireland
    e&oe.

    Reply
  9. Alex G

    Hi John,

    Thanks for such a detailed comment.

    No, perhaps it shouldn’t be considered ‘proof’ and there always limitations to studies, but proof, if achievable, seems a long way off for reasons such as ethical ones. Until we have that, what are we to do? Nothing? Go for the most extreme threshold and accept the consequences of dearer prices and fewer products (the problem currently facing the Australians)? Or go for a more conservative and sensible level which ensures that 10mg is difficult to exceed?

    The difference in results between placebo and 10mg in the Catassi study were not statistically significant, as the authors stated, and he and Fasano have put it on record that they consider 10mg to be safe for the majority (with an estimated up to 5mg of ‘background’ intake to account for the participants diets, the middle group would have been on up to 15mg daily). http://www.ajcn.org/content/86/1/260.2.full.pdf

    Just above the conclusion from which you quote, the authors also state: “The threshold of 20 ppm keeps the intake of gluten from “special celiac food” well below the amount of 50 mg/d, which allows a safety margin for the variable gluten sensitivity and dietary habits of patients.”

    I think we should be guided by the expertise and analysis of coeliac experts. All of them support 20ppm, and I have been unable to find one against this level.

    Another interesting point from that study is that the median gluten content of the 40-odd products tested, which were part of the participants’ natural diets, was around 5ppm – considerably lower than the 20ppm threshold, showing how ‘gluten free’ gluten-free products now are.

    I’ll look forward to your post very much, but of more interest to me here, though, is for your reason for wanting the change. I asked in the post for whose benefit you would like gluten free to mean ‘zero’ or ‘no detectable’ – your own, or part or all of the coeliac community? Which is it and why?

    Alex

    Reply
  10. Anonymous

    Alex, you present a good argument and I agree fully with your blog article and your comments. Like yourself, I believe that we should trust the latest research carried out by the world's leading experts on coeliac disease. And then it's our choice as individuals if we follow their advice or not.

    Reply
  11. John

    Anonymous,

    I think you have missed the point entirely.

    Are you aware that there is NO credible research that demonstrates that 20ppm is safe?

    Are you aware that what little research has been done, indicates that 20ppm may NOT be safe?

    Have you read the USFDA report?

    You make a point "it's our choice as individuals if we follow their advice or not". Exactly what choice are you referring to? because I don't know of any choice we can make.

    If I had a choice, my choice would be to NOT ingest any Gluten but if I buy a product marked GlutenFree this option is being taken away from me as the product may contain Gluten.

    If GlutenFree actually meant NO GLUTEN and if there was a label for LOW GLUTEN (e.g. up to 20ppm) then I would have a choice as would you. As it is – if and when you or I purchase a product labelled GluteFree neither of us will know if it contains Gluten. So, sorry but this is not a "choice".

    John
    Twitter: @GFLifeIreland – I got it right this time 🙂

    Reply
  12. Courtlands

    I agree and support your comments John 100%. I personally couldn't have stated your points and opinions with such clarity. I congratulate you on your explanation and understanding of the issue. Thanks Sile

    Reply
  13. Anonymous

    As an ultra-sensitive coeliac I welcome the changes. It took over 13 years to be diagnosed – when I was made ill by GF food I was confused.

    Since I was diagnosed with sulphite sensitivity I have come to realise that labelling and guidance for coeliacs is far better than it is for other allergens.

    I eat a GF diet that largely avoids processed food – I ensure the cereal I eat is produced in a factory that only produces GF food. Even with these lengths I suffer severe functional gut pain – but I acknowledge that I represent a minority.

    Reply
  14. Anonymous

    John, I am not of the 'Anonymous' above. I do however think that you are over reacting and that is YOUR choice. But I wish that you wouldn't spread your paranoia/passion/conclusions (call it what you will) to innocent confused coeliacs, many of them newly diagnosed, as you are trying to make them not follow the advice they get from their doctors, advice which is based on extensive research and long standing work from the world's leading experts on coeliac disease. I choose to trust them more than advice from non professionals on internet forums and twitter like yourself. Sorry if this is hurtful to you. I welcome the new legislation. And as far as Codex wheat starch less than 20ppm is concerned, I am a very sensitive coeliac and I have successfully eaten products made from wheat starch less than 20ppm for a long time and I feel great for it. You may not agree with me and that's your choice. So. Said my piece; have a good weekend everyone.

    Reply
  15. John

    In answer to the 'Anonymous' post of the 6th January 2012 17:33 :-

    Anonymous,

    If you know anything about me then you know that I am one of the strongest advocates in Coeliacs ONLY seeking medical advice from their Doctors / Medical Professionals and not seeking medical advice on the internet or twitter.

    You will also know that one of my 'pet' hates is unqualified people giving medical 'advice' to Coeliacs over the internet – many of whom I have engaged with on the internet (sometimes openly, sometimes discreetly) because of their actions.

    I have also commented to this effect numerous times in the past.

    If you don't know this then you know nothing about me.

    Either way you should not have made such scurrilous accusations.

    If you wish to stand by your accusations then justify your accusations that I am trying to
    spread my “paranoia/passion/conclusions” to (any) Coeliacs in order to “make them not follow the advice they get from their doctors”

    And kindly show where I have provided "advice.. on internet forums and twitter" in the manner in which your allegation is meant.

    Perhaps if you are going to make a scurrilous attack on me just because of my view, and thats what we are doing here – expressing VIEWS in an HONEST and OPEN debate (note : we are NOT PROVIDING ANY FORM OF ADVICE) – you might at least afford me the courtesy of identifying yourself.

    As to being "Sorry if this is hurtful to you" – your allegations are not 'hurtful', however they are completely false and as such they are wholly offensive.

    For the purpose of clarity and the avoidance of doubt – Kindly Note: I support the reduction of gluten content in Glutenfree foods from 200ppm. However, it is my OPINION that 20ppm is still too high. My opinion is based on my reading of most available research into the subject in which, to my knowledge (and I will be very happy to be corrected if I am wrong), there is NO scientific PROOF that 20ppm is a safe level for Coeliacs.

    Sincerest apologies to Alex for the road that my posting(s) brought your excellent article – I hope you accept that I could not leave those allegations unanswered.

    I hope other readers and commenters will not allow my collision with 'Anonymous' to detract from the subject matter and will continue to provide their opinions in regard to the matter.

    John
    Twitter: @GFLifeIreland
    e&oe

    Reply
  16. Alex G

    Hi John,

    To tackle on-topic issues first…

    20ppm is a concentration – you say there is no research to say it is safe, but what has been looked at is daily intake in mg – 50g of 200ppm bread is going to be ‘safer’ than 1kg of 20ppm bread….

    You say you’d have a choice if ‘glutenfree meant NO GLUTEN’ – but no gluten is not an option, for reasons discussed. You *do* know whether or not a product labelled ‘gluten free’ contains gluten or not – it *does*! There is no doubt. It’s an amount between 0 and 20ppm.

    You’ve still not stated for whose benefit you would like to see it your way. Can I press you on that?

    Thanks to the ‘anonymouses’ (anonymi?) for interesting extra comments – and, while I’m here, for all the Twitter RTs and emails I’ve had about this too. I’m really pleased that so many people are reading the post – several hundred so far – thinking about the issues and discussing them.

    That said… while (clearly) I accept anonymous comments on the blog, I would prefer those choosing to comment in this way to briefly explain why they are doing so, and I do agree somewhat with John that criticisms should perhaps be supported and justified, for instance with examples. Most importantly: let’s be as courteous as we can to each other, as ultimately we are all on the same side in wanting the best for coeliacs.

    And that said… John, I’m afraid it does seem a little self-contradictory that you say coeliacs should ‘only’ seek advice from qualified experts when the advice they give is that gluten-free food (ie at <20ppm) is safe for coeliacs…

    But no need to apologise. It’s a sign of the importance of the subject that things are getting a bit heated. I’ll look forward to your own article / post at the weekend too. Feel free to come back and link to it here.

    Alex

    Reply
  17. Michelle Berriedale-Johnson

    Dear All –

    A lot of heat being generated on this very emotive subject – understandably. So I will just add three brief points:

    1. There really is no gold standard expert guidance in this area. There are a number of medical/coeliac experts who quote various trials to support their particular view (zero, 20ppm, 100ppm etc) but as anyone who has worked in the medical field knows, the trial that provides the definitive answer this week, may well prove to be fatally flawed by a new trial next week. So while we can and should listen to what they say and be guided by those who seem most reliable – or sensible – we should not take any of their suggestions gospel.

    2. Every coeliac, like every allergic and indeed every person suffering from any condition, is an individual and although their symptoms may fall within a general disease pattern, no one person will ever be identical with any other person. So while 20ppm of gluten may fine for coeliac A, it may cause problems for coeliac B – just as one peanut allergic person may react to inhaled peanut dust while another may only react to ingested peanut.

    3. We have to be practical. If gluten free food is to be manufactured for those on gluten free diets, manufacturers must have some level to which to work. Manufacturing to zero gluten is not practically possible, so some level has to be set to give manufacturers guidance. If it is not, they will not make the food. (I know of several manufacturers who will not label their products as dairy free, although they in fact are, because there is no level set for dairy contamination and they do not want to risk being outside the law – thus depriving those on dairy-free diets of a good product.)
    Given the current state of knowledge and the huge variability in the sensitivity of coeliacs, 20ppm seems to me to be a reasonable compromise, especially since, as has been pointed out above, guaranteeing that they will always meet the 20ppm level means that most foods contain significantly less gluten than that.

    As for those who are ultra allergic, ultra sensitive coeliacs may not be able to tolerate this but, sadly, I do not really see that there is any other viable option.

    Reply
  18. John

    Alex,

    I expect that you will agree with me that any posts, anonymous or otherwise, which make scurrilous accusations – do not constitute ‘reasonable debate’ and are not only unwelcome but can be most harmful especially in the internet environment where the exposure is almost limitless – hence the need for the use of ‘moderators’ on forums etc.

    When I provided a ‘snippet’ of my argument against the 20ppm limit I done so to engage you and your readers in open debate. I believe I acted in a transparent manner going as far at to identify myself so that other people could engage in a proper manner. In doing so I did not hide behind an ‘Anonymous’ identity. In effect I invited honest and open comments and willingly exposed myself to the consequences of what appeared could be an unpopular opinion.

    However, I did not expect, or seek to expose myself to accusations from someone who hides behind a wall of anonymity – rather, in the event of this occurring I expected a least a minimum level of ‘moderation’.

    Therefore, I won't comment any further than this post as I do not wish to engage with 'anonymous' people who are willing to make unfounded and offensive accusations that can cause damage to my reputation.

    A few last points / question: –

    In answer to your question … I cannot deny 'self interest'.

    Re: your comment that it "does seem a little self-contradictory that you say Coeliacs should ‘only’ seek advice from qualified experts when the advice they give is that gluten-free food (ie at <20ppm) is safe for Coeliacs".

    It would be self contradictory if the qualified experts were actually saying 20ppm is safe … but alas they aren't. If they were my view wouldn’t be the opposite to yours. Show me a handful of qualified experts that are definitively and unambiguously stating that up to 20ppm gluten/d is safe for Coeliacs in the long term.

    A final question to you … what is your comment on the following quote relating to the Catassi Study from Fasano’s letter to the USFDA in support of the 20ppm limit ….

    “The three month trial showed that a daily intake of 10mg of gluten … for three months by adults with Celiac Disease caused no intestinal damage”

    when considered in conjunction with the following extract from the Catassi study…..

    “Some CD patients showed a clear cut worsening of the small intestinal architecture after ingesting only 10mg gluten/d .. furthermore 1 patient challenged with 10mg gluten/d experienced clinical symptoms after a few weeks”

    I will continue to prepare my article and will provide you with the link when its complete. I expect to address all other comments within my article.

    Regards

    John
    Twitter: @GFLifeIreland

    PS. Beverages in London next month?

    Reply
  19. Alex G

    Hi John,

    (Apologies – your comment ended up in spam. It's now published above, so Michelle would have commented without having read it.)

    I can't help but feel we're going around in circles. Also that you're trying to challenge a position statement which is not being made. I'll try to be brief as long comments may put off newcomers to the debate.

    Nobody is saying that no coeliac reacts to 10mg.

    Experts are saying the *majority* of coeliacs do not react to 10mg.

    They also have not commented on the safety/non-safety of 20ppm per se, they have merely recommended 20ppm as the most suitable maximum concentration to allow the best products to be made within the boundaries of affordability while still ensuring it is *very* difficult to reach 10mg. This is for the benefit of the *majority* of coeliacs.

    Long term studies are not available because, obviously, it *takes time*, all this is relatively new science, and there are ethical issues.

    If you think the research does not support this position, what position do you think it does support? If you think 20ppm is too high, what do you think it should be, and what evidence and which experts support that position?

    A.

    PS. You want beverages next month? Will there be room in your belly with the box of non-zero-gluten treacle tarts in residence? 🙂

    Reply
  20. Alex G

    Thanks Michelle for your insightful comments. Fascinating to learn of the dairy free issue – I wonder whether that's confused by the fact that vegans must also be taken into consideration in this case? Unlike with gluten, ethical issues also come into play as well as health-related ones.

    Alex.

    Reply
  21. John

    Alex,

    I made a 'final' post on the subject at 3:30am this morning.

    The post is gone! Presumably removed????

    In the post I provided a reason as to why the post would be my 'final' post, I answered your question "for whose benefit you would like to see it your way?" and I also posed questions to you – I also sought your comments in relation to the manner in which the Catassi report was quoted in Prof Fasano's letter to the USFDA of Aug 2011 .

    Michelle – a voice of reason and wisdom,

    I agree with almost everything you have said. I would state that it is my opinion that there was another viable compromise option.

    John

    Reply
  22. John

    Alex – talk about timing!

    I see the post is came back just as I made the last posting

    John

    Reply
  23. Micki

    As a person very sensitive to gluten, for me 20ppm means there is gluten in a product and I don't touch it. Simple as.

    If someone wants to eat processed foods which they are quite clear from the labelling may contain a small amount of gluten, then that is their choice. We really do not know the amount of risk that involves and I have no doubt research into this will continue ad infinitum, plus individual variability will always be a major factor in damage done and symptom reactivity.

    Personally, I think it is wrong for anyone to say definitively that a particular amount of gluten is 'safe' for anyone. We just cannot know, but can only make a judgement based on the latest research (depending on where it comes from and who funded it of course). Going by whether you have outward symptoms or not is never a good idea either I reckon; perhaps the safest bet would be regular villi checks to show whether effective healing is taking place over time or not.

    I welcome the move down to 20ppm as it is at least substantially lower, but I do not believe we should be consuming any. But then I am an idealist. And eat very little processed food. Believe it or not, it can be done. We do not have to be reliant on food that needs labels.

    Reply
  24. Alex G

    Hi John – just to confirm, no, I didn't remove the post at any stage, and would not do this. I'm sorry – it just went into spam, possibly because it was posted at an unusual hour. I reinstated it just as I moved to post my response and realised it wasn't there.

    I'd also like to add I don't have the facility to edit posts (or if I do, I'm unaware of it).

    Thanks, Alex.

    Reply
  25. Alex G

    Hi Micki – I do think most processed food will have trace gluten. Obviously foods aren't labelled '20ppm' but I'm curious as to what kind of processed food you do eat, in that case – as you say you don't eat 20ppm ie gluten-free – so I presume you only go for 'no gluten-containing ingredients'? Do you feel secure that there is no trace gluten in such foods?

    I agree that a processed food-free diet can be done, but not everyone has the time or means to eat this way – and there are many who are reliant on GF food which needs labels, and indeed prescriptions of GF food for them and, importantly, for their coeliac children.

    Thanks for a very interesting comment, Alex.

    Reply
  26. Micki

    I think it is a fallacy that we must be reliant on processed labelled GF foods – what's wrong with eating food and making it as we did not so many years ago?

    We have made ourselves reliant on labelled food and of course it is convenient but actually not that good for us and is most often much more expensive than 'real' food we concoct ourselves. It doesn't take that much more time and it is certainly cheaper to buy food and make meals ourselves, but out current culture makes that the exception rather than the norm.

    That's why nutritionists like me are busy – we are eating out of season foods that are not nutrient dense enough and contain anti-nutrients such as food additives and too much salt, sugar and the wrong types of fat.I do think the tide is turning on this issue slowly though; I hear a lot of people say they want to return to making more of their own food and freezing it because of their concerns about food manufacture. My job is to help them in that.

    If you want to take the risk of consuming gluten, then convenience foods are always available and that is everyone's choice but to say we – and shockingly children – are dependent upon them strikes me as ultimately depressing. Should we really be feeding our children processed filler foods? I think not. Especially those who have already compromised gut and immune systems.

    How long does it take to make a muffin or loaf of GF bread so you can be sure what's in it rather than buy one you can never be certain of? About 30 minutes every 2/3 days. We have just got out of the habit and, for me, that is one of the reasons food allergy and intolerance levels are soaring. We eat too much of the same foods all the time and substituting GF versions of those foods that weren't do us any favours in the first place is not really making things any better, is it?

    As I say, I am an idealist but I can't lie: that's what I advise my GF patients to do. I ask them to change their diets and avoid eating the same diet as they had before but just using GF pasta, bread, biscuits etc that they had before means the diet most often does not improve except for the removal of most gluten. It still leaves them at risk of other diseases even if the gluten is reduced (note: not out).

    I accept it is far more difficult for parents with GF children with lunch box and party peer pressure, but safe substitutes can be made cheaply and quickly. Surely we should strive for the best for our children; we may not always be able to make it but there's nothing wrong with having that aim and I don't think we say it often enough.

    Most parents love to learn how to do it themselves and bend over backwards to help their little ones be well. My job is simply to show them how. It's tough, of course, and they often have massive learning curves and change the work/life balance to accommodate it, but is that such a bad thing? They are often surprised at how easy it is once you get into the habit of it and are ultimately pleased at the way it affects family life. You cannot say GF foods are safe, however you cut it.

    You asked what processed foods I eat. I accept I will eat far fewer than most because of the severity of my sensitivity, as you know, and I know not everyone will be or need to do the same.

    Umm. Thinking….

    Pineapple juice, sparkling apple juice, Cava, champagne!, capers, anchovies, eggs, passata, herbs and spices, dried fruit. That's about it.

    Reply
  27. Alex G

    Wow – thought I'd seen some extreme views on this subject but "you cannot say GF foods are safe, however you cut it" will take some beating…

    Nothing wrong with cooking from scratch at all, Micki. I didn't say anyone must be reliant on processed GF. I said some people are.

    I don't disagree with your observations concerning food's seasonality, our nation's lapsed food literacy and the rest of it, but I am against needlessly guilt-tripping people who for whatever reason choose to or have to make use of rendered GF products. Arguing that there's no need to consume bread – while empirically true – is I think a bit out of touch with the way everyday people live and eat. Try telling a single mum to prepare a quinoa pilaf for her coeliac child's lunchbox when she's trying to hold down a couple of minimum wage jobs. It shouldn't be a class issue but sadly it often is. Prescription foods ensure many coeliacs stay on the diet and stay symptom free.

    It's terrific if more people are coming to you to help them get established on a wholesome diet, but I suspect you're not seeing the people whose primary concern is to put a filling meal on the table that isn't going to give their children a week's worth of diarrhoea, never mind find the money for private nutritional consultations.

    Reply
  28. Saara

    Thank you Alex for this post on 20ppm and I'm all for the new labelling laws! I'm all for making everyone happy and would love to find a way to increase the limit of testing to 0ppm [if it was possible, which it's not!] However, if it was possible it would certainly increase prices on gluten free food which I'm sure most of us 'gluten freers' would not appreciate as it's expensive enough!

    I'd also like to address Mickis comments too. I would love nothing more than to live an idyllic lifestyle where I didn't have to eat gluten free processed food and live like Barbara from The Good Life, grow my own vegetables, eat organic fruit and veg. I know it's not impossible, but it's pricey and can sometimes be proved to be an inconvenience for others. It's nice to see that you care for your patients health but it'd be nice to see you not discourage your patients in having processed gluten free food altogether.

    I think we're really lucky to have the choice we do in supermarkets. We have so many, good quality, gluten free processed food, that we're spoilt for choice! I like to have this choice and not have someone discourage me from eating it.

    When I was first diagnosed with coeliac disease, I found the whole thing to be quite isolating and I became very depressed. Some of you may scoff at that, but having to change all your eating habits, learn how to cook gluten free, educate yourself with gluten free food and live the life you were leading before you diagnosis, doesn't half knock you. For me, eating shop bought gluten free bread, pizza, pasta, biscuits etc gave me that sense of normality.

    I also don't think we're out of habit for cooking our own food. Sometimes I'll find that rare window of opportunity and will go about cooking my own gluten free cupcakes or gluten free Yorkshire puddings but sometimes I just don't have the time. On top of that, it's far cheaper to buy shop bought, processed gluten free alternatives. For example, take the price of shop bought gluten free pizza and compare it to the price of all the ingredients for it!

    Let's compare Dietary Specials pre made frozen pepperoni pizza at £2.86 [from Asda]

    compared to ingredients to make your own gluten free pizza;
    *Gluten free flour £1.87,
    *Yeast £0.64,
    *Xanthan gum £2.62,
    *Eggs £1.50,
    *Grated Mozz cheese £2.00,
    *Tomato purée £0.98,
    *Pepperoni slices £1.00 = £10.61 [all from Asda]

    Reply
  29. Micki

    Ha, perhaps I was feeling a bit extreme there (!), although I suppose it comes from years and years of seeing people not get well on a traditional gluten free diet and that is more than a little frustrating. In the end, you learn to start with the aim as high as possible in the hope that most people will heal quicker that way.

    Re Saara's comment, I wish I looked like Felicity Kendall in The Good Life!

    Looking at the pizza costs, you would need to work out how much each thing would cost to make one pizza. You wouldn't use 6 eggs, a whole pack of pepperoni, a full tube of tomato puree or a tub full of xanthan gum and I still bet the cost of the teaspoon here, the squirt there, an egg, a small amount of flour, a few slices of cheese and meat would come in at way below the £2.86 of the bought pizza. You could probably make at least 3 pizzas for the same price as the Asda one. I did it once teaching in a poorer part of Blackpool to demonstrate to Mums how they could save money by making their own much more cheaply to save money. Maybe not pepperoni as that IS expensive, I think I did a cheese and tomato marguerita from memory, not gluten free of course!

    Anyway, enough musing. Enjoyed joining in, even if I am one of your 'passionate' ones, Alex!

    Reply
  30. Alex G

    The 'not getting well on a GF diet' is an interesting one, because there could be lots of complicating factors – such as underlying IBS, or bacterial imbalances. I need to look more closely at the research at some point, but I'm not convinced it's necessarily trace gluten or other grains causing the problem.

    Yes, the maths is a little more complex re: pizza, I agree! But I think Saara's point was that when you've a light purse and you're faced with the two choices at the supermarket, the choice to go for the cheaper one is the only option for some. Yes, going for the ingredients may feed you several times, but there are time issues, again, to factor in, and if you're not confident in the kitchen (back to our food illiteracy again..) or have had a poor experience with GF flour, it's a clear-cut choice to go ready made…

    Glad you enjoyed the debate, Micki, and I'm grateful for the passionate input which has driven it!

    Reply
  31. Lucille Stuart

    Thanks Alex for an interesting debate! Have you guys read this article? What are your thoughts? Do you agree with three of the world's leading experts on coeliac disease or not?
    http://www.coeliacsmatter.com/digestive_conditions_coeliac/cd_management/cd_manage_articles/acceptable_levels_gluten_catassi_ciclitira_10_11.html

    Reply
  32. Alex G

    Hi Lucille and thanks! Yes, it's by Michelle, who commented above. I agree with Catassi and Fasano.

    Reply
  33. sleepinghorse

    Hi Michelle,
    I will reply to Alex's wonderful post when I've had a chance to think more about it but I did want to reply at the moment to your last comment about there possibly not being any other viable options.
    There is actually. As Alex points out, both Australia and New Zealand current gluten free standard is "no detectable gluten" which is of course about 3ppm as per the current testing levels. I believe this is sustainable but of course I imagine our products are more limited but then I live in New Zealand which has many gluten free products (mostly made in NZ due to many imported products not meeting our standards).
    As Alex also points out, both these countries are looking at coming into line with Europe and raising our levels to 20ppm. Not sure how I feel about that yet. I need to think about this a little more.

    Reply
  34. Pingback: Is gluten free bread really gluten free? | Allergy Insight

  35. Pingback: Gluten free is ‘dead’: some analogies | Allergy Insight

Leave a Comment

Your email address will not be published. Required fields are marked *

By continuing to use the site, you agree to the use of cookies. more information

The cookie settings on this website are set to "allow cookies" to give you the best browsing experience possible. If you continue to use this website without changing your cookie settings or you click "Accept" below then you are consenting to this.

Close