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The meaning of 20ppm of gluten and why it therefore is so very dangerous to both people with coeliac disease and gluten intolerance

Lynxcat profile image
35 Replies

I thought I would look at this 20ppm that is pushed at the coeliac population just to see what it really means. Shockingly, it is far worse than I thought and certainly not as minute an amount that I thought it may be. The reason why I was astonished at the size of the quantity that is deliberately being stated as 'safe for coeliacs to consume' was I thought it must be so tiny you can suck it up by breathing it in during a gust of wind. For why would any person state that it is safe if it was larger than this? And to make matters worse - this is surely on the assumption that a person will only eat a presumed amount of portions containing the 20ppm in a 24 hour period. The amount a person is consuming is left for themselves to work out: maths books at the ready time to do your sums!!

Well let us look at an ordinary piece/slice of bread - this allegedly contains 124,000 parts per million of gluten or 3,515 milligrams of gluten. If we look at a 'gluten free loaf' with an allowed amount of 20ppm then one slice would equal slightly more than1/2 milligram of gluten which is 500 micrograms, which for a person with coeliac disease is quite a lot. To make it easier still to understand vitamin tablets are measured in micrograms - if you were taking 500 micrograms of a vitamin it wouldn't be classified as a small amount.

diet.com/dietblogs/read_blo...

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Lynxcat
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sassyl profile image
sassyl

20 ppm is 20 parts per million

or 0.00002 grams per 1 gram (0.02 milligrams in a gram) maximum amount

Which is equivalent to 99.99998% gluten free.

in reply tosassyl

We eat around 500g at meal times and a bread roll weighs around 100g which's 100,000mg and 500g is 500,000mg

20ppm is 20mg per Kilo gram and on a molecular level this is a lot of toxins for instance there are 33,400,000,000,000,000,000 molecules in 1ml which's 1mg of water. And this is in 1ppm.

Gliadin molecules are larger but you are still talking about lots of a toxin.

This is a contentious issue and many of us can not tolerate up to 20ppm of gluten in gluten free food so we see food clearly labelled as gluten free which's aimed at us as not suitable for us.

I also think that we have to ask ourselves why we have allowed levels of gluten in gluten free food. And the allowed level of gluten in gluten free food is coming down all the time and not going up. So I think that you are brave making this Blog Lynxcat.

Celia profile image
Celia

That is quite shocking and I'm surprised coeliacs should have this much gluten at all. Since the new laws does this mean we will now have less allowed than we used to?

Lynxcat profile image
Lynxcat in reply toCelia

Celia, I try to have none at all!

Mia1057 profile image
Mia1057

We used to have 100ppm and now it is 20ppm and in other countries it is either 0 or 10ppm. So it is coming down but if like me you can't stand any it's big problem

Lynxcat profile image
Lynxcat in reply toMia1057

The truth is Mia - if a person has Coeliac Disease or Gluten Intolerance they cannot and should not have any gluten because gluten acts like a poison to their system. I would say to any that says that small amounts do not affect them ..... have they given themselves a fair deal? Have they tried being totally gluten free for 12 months and see how they feel?

I would also say - it is well known that small amounts of gluten that are regularly consumed daily by coeliacs eventually usually lead to villi atrophy and if it is continual damage there are reported cases of people who get to point where the villi lose the ability to mend themselves. What then? It surely is never worth getting to that point for any of us, is it?

Apricot profile image
Apricot

Not all gluten free bread & rolls test at 20ppm...I would be mortified if a certain brand was even in double figures....like the idea of "it does what it says" on the pack...ie gluten free.

Rolls tend to be 70-85gm each..depending on producer.

The testing levels of other countries..at 5ppm...is more than possible,

Zero...isnt possible....as there is gluten in the atmosphere..whether you are stood on Trafalgar square or in M&S. Unless of course..you happen to live in a modified atmosphere...which I dont.

Most...but not all are ok at 20ppm...as long as you take reasonable precautions..you should be ok....no guarantees...not in this life....

Apricot

in reply toApricot

I'm sorry Apricot but gluten is only in the atmosphere of bakeries and mills etc as gluten is a plant protein and too heavy to be in the atmosphere and look at the problems this would cause those who are allergic to nuts, if plant proteins were in the general atmosphere.

The sad truth is that not all coeliac can tolerate allowed levels of gluten like in malted cereals etc.

Lynxcat profile image
Lynxcat in reply toApricot

Hi Apricot, I think in the name of friendship we will agree to disagree on this point.

Perhaps the way forward, is for manufacturers to be more transparent and declare how many ppm are in their products - not just as a total but as an item - at the moment it is not at all clear. Even with pure oats, when they have been tested according to one health report, there were significant amounts of gluten in a large proportion of the 'gluten free' ones. This wasn't made clear on any of the packets - and the fact that it possibly may vary from packet to packet. Peanuts and nuts and nut contamination has to be declared all over the place and yet we, as coeliacs, have lost the urgency of the same consideration.

When I was young, I worked with a girl who had been diagnosed as a coeliac when she was a teenager. It had taken 13 years for her diagnosis to be confirmed. She was around 18 when I worked with her and one day she began telling me all about her disease. I had never heard of it until this point. The one message that was branded into her brain by her consultant was this for she said it nearly every day 'I must not eat any amount of gluten if I do I will die, my doctor said it will kill me!' So in the 1970's it appears that people were much more careful about what could happen if a coeliac eats gluten than now. Added to this, is the fact that many coeliacs are diagnosed after the age of 50 not knowling the full extent of any damage that may have occurred to both their intestines and their organs, some of which may heal but some may remain damaged. I have not been able to find any reports which currently list the extent of damage that is usual to older coeliacs or whether their organs remain in a state of disrepair. By keeping us all in the dark - it is somewhat rather gloomy. We definitely need more information rather than all the smoke and mirrors. I am still of the belief that manufacturers should be able to produce food that is free from additional gluten that is safe, that is not stuffed with additives. I also believe that the contents of all food items should be fully transparent right down to the dust.

StephenAB profile image
StephenAB in reply toApricot

Gluten is not in the atmosphere out side of areas milling or using flour, even at harvest time it is not possible.

If any ingredient from a gluten source is used in any product ie foods, beverages, alcoholic beverages or pharmaceuticals then it should be declared as such until a zero detection test is possible. Which will never happen as the gluten free market is there only for those who can tolerate it and is not the treatment for coeliac disease.

vince profile image
vince

AAAAAAAAaaaaaaaaaaaaaaaaaaaaaaaaaaaaah me so glad to be dyslexic at this moment.

Lynxcat profile image
Lynxcat in reply tovince

Lol!! Hope that this isn't caused through the gluten? ;)

Lynxcat profile image
Lynxcat

I will explain what led me to actually write the above. It was when I began to read about 20ppm and why it was settled at 20ppm. The inference was alleged that it was considered to be safe at 20ppm because they could only find evidence of damage occurring in the first third of the small intestine with this amount; it was believed that the lower two thirds may remain unscathed and undamaged. The only way a person could know whether such damage was only occuring in one part of the small intestine would be to have regular biopsies of all three.

What is obvious is that there is hidden gluten that we all take in every day and this would need to be taken into account with any additional amounts we were freely adding. Is this a risk that I would be prepared to take? No it isn't. I would simply say that it couldn't possibly make sense to take any additional risk by knowinly adding effective amounts of gluten into a daily diet not if a person wishes to be as well as they could be. Every tiny amount of damage that occurs with ingesting gluten has to be sorted out by the body this is additional to all other illnesses that develop as secondary issues. It is important to give yourself a chance to heal and how can you heal if you are causing constant daily damage by knowingly eating foods that contain any amount of gluten. You cannot control the unknown - the gluten that flies in the air at the bakery, the supermarket, the corner shop, the restaurant, the cafe and lunch times at school and at work. The miniscule cross-contamination of microscopic amounts of gluten in all foods. You can control the extra amounts when you knowingly purchase foods that contain Codex wheat starch .... (wheat - why would any coeliac risk eating wheat?); foods that have the allowed maximum amounts of 20ppm. We all have the ability to control these amounts.

People climb mountains, knowing that they may fall and die; people jump out of aeroplanes and pull the rip cord and hope that their parachute will open ... they don't have to risk their lives doing this. So why would we ever want to go that one step further and play Russian Roulette? To know that by eating one way instead of another can have such different results on the outcome of wellbeing and to my mind it makes no sense to keep spinning the barrel!

Two little extra pieces of information that you may wish to read ..

thesavvyceliac.com/2009/03/...

biomedcentral.com/content/p...

jackieO profile image
jackieO

I think I am going to leave this group. I can't stand being nagged at all the time because I "choose to poison myself". It's my body; I KNOW what I felt like when i wasn't "gluten free", apparently according to some on this group I am still not gluten free and therefore a danger to myself and others with CD. I survivied for nearly 40 years without killing myslef eating gluten and was never desperatley toxically unwell, I DO feel better eating the way I do and that does include codex wheat. While I appreciate that some people still suffer at this level I DON NOT WANT TO BE PREACHED AT ALL THE TIME!

sassyl profile image
sassyl in reply tojackieO

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zoombie profile image
zoombie

Hi Lynxcat - Oh Boy - you opened a can of worms here! Having said that, I am going to look closer still at the bread and biscuits I have on prescription because although I consider myself to be fully GF, I still have and am suffering badly from DH! Trying to get to dermatology to be seen and even try and get dapsone is proving a nightmare! Well done for highlighting this to us!

Lynxcat profile image
Lynxcat in reply tozoombie

Hi Zoombie - Won't your GP prescribe it for you? Oh not sure whether this might be of interest (just in case you may not have seen it):

healthcentral.com/encyclope...

(*If you can stay completely gluten free (nothing from wheat, barley, oats and rye) - the dapsone should be able to be reduced and even discontinued after a while - according to the link above.)

x

zoombie profile image
zoombie in reply toLynxcat

Hi Lynxcat - I do get the Juvela products on prescription - but have looked at the Glutafin products which I got free and they contain wheat and/or wheat starch - its now in the bin and I will stick to the Juvela products. I think the glutafin has been responsible for the latest outbreak of DH. Will be reading the article you posted with interest! Cheers x

Lynxcat profile image
Lynxcat in reply tozoombie

Oh Zoombie, Fancy allowing products that contain wheat and wheat starch on prescription! I wonder how many this causes to never ever get well?

Hope that you get the DH fully sorted out and you feel well soon. xx

StephenAB profile image
StephenAB

ALWAYS READ THE LAST LINE.......

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

There are those who consider they may have DH check out your histamine responses for Urticaria.

Lynxcat profile image
Lynxcat in reply toStephenAB

Hello, I am rather confused as I haven't emailed anyone. I also have never asked for any of the 'grain' family - that being wheat, barley, rye or oats to have their gluten removed. They shouldn't be considered as part of a coeliac diet as there are plenty of substitute grains and roots that do not contain gluten. Secondly, you do not know me yet presume to refer to my health issues which you also have no knowledge of.

With reference to labelling for consumer protection - please consider the following: Why can't we have products that are not made from gluten grains? Why is it considered necessary to keep saying that it is safe for people who cannot have gluten that it is? I notice that you say "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." Not that they do not cause adverse reations!

Are you a coeliac? Do you have any gluten issues yourself?

As I said - I have never emailed you - and I do not know who has in my name - but it certainly wasn't me - but find it utterly disappointing that you think it necessary for coeliacs to have wheat, barley, rye and oats as part of their diets - we have never asked for them to be included in our diets and would be extremely happy if we could have them completely removed from our diets. We would like the same helpfulness that coeliacs experience in Australia and New Zealand!

StephenAB profile image
StephenAB in reply toLynxcat

If you read this again you will see that it is an e-mail response from the person who had the resposibility for the legislation re gluten. it is not a response to you personally but to your OP and the last line is very clear "However such considerations can never preclude individual reactions" which basically means the rules are there for the majority not the minority.

Yes I am a diagnosed coeliac and yes I am a Refractory Coeliac who has given up on all medical intervention as I am also sunjected to gluten in medications of which the EU has been requested by MHRA to include gluten and derivatives on labels for the benefit of coeliacs..

As stated the above e-mail is for information only.

Lynxcat profile image
Lynxcat in reply toStephenAB

So was this a response to you? As it is under your avatar. Thank you for explaining - I was apalled to think you have problems with medication containing gluten too. I do hope that you can find something that may help - have you checked out any Australian medicines by chance?

Below is a further response to our "friends" at the European Commission for Labelling and of course apparently the laws we are currently following:

I understand that everything is linked to codexalimentarius.org/

and the standard that has been set at 20ppm. There are countries though who manage perfectly well to achieve a minimal amount - that is currently upto 5ppm - namely Australia and Newzealand to name but two. If it is so easy for them to produce food that in many instances is as low as 0ppm then why are we not aiming to do the same? This would then serve everyone who was coeliac or gluten sensitive, wouldn't it?

I still cannot see the necessity for using Codex wheat starch in food labelled 'gluten free' or any form of malt or in fact any form of grain derivative. It is not a matter of individual reactions but of pure common sense. If gluten can cause villi to die and can cause permanent atrophy of villi; if gluten leaks through the gut and weakens organs; if gluten promotes bone disease and encourages dissolving of bone; if gluten leads to early death - then surely no-one with coeliac disease should be subjected to it. Why should we have to seek knowledge to try and preserve our health? Why would people promote foods that contain grains? Surely a law is only just and true and good if it protects all the people and certainly what kind of law protects none?

I am sorry that you are a Refractory Coeliac but surely if you suffer with such a debilitating health illness you can see my point - gluten is a poison to all coeliacs even the smallest amount, so it really has to be common sense to avoid it whenever and wherever possible. No one would give someone with a nut allergy nuts, no one would give someone with a fish allergy fish or shellfish .. and yet here we are in 2012 the 21st Century and we still have people giving coeliacs gluten. And regarding the labelling - it is not entirely true is it at least for derivatives such as maltodextrin are not included in the listings - ie it should say this item is made from wheat or barley, etc. What is worse still is that newly diagnosed coeliacs are left to fend for themselves in many ways and only find out over time.

StephenAB profile image
StephenAB in reply toLynxcat

Very sadly as time has progressed I have found that the biggest problem for a coeliac is a coeliac as most swear by the gluten free diet and a minority have issues with it. I can progress no further with my quest to have glute added to all labels but lack support and you are up against coeliac charities and food manufacturers, I have only yesterday got an Appeals Officer at the DWP to start listening to my issues which following another tribunal might just help others who suffer when they should not

Celia profile image
Celia

Hi Lynxcat,

I agree totally with you. I never want to poison my body by eating anything with gluten grains with the gluten so called removed. I avoid all products like this and for grains will have rice or quinoa which I love. It's a shame coeliacs can't just avoid these bad grains. I'm going to check my DS multigrain bread which I get on prescription that it is ok and has no codex wheat starch or equivalent. Thank you for drawing our attention to this.

Lynxcat profile image
Lynxcat in reply toCelia

Hi Celia,

Yes, it is a minefield out there and made much more difficult for all of us. If only they had to list on food items whether it contained anything derived from wheat, barley, rye and oats. Perhaps I am naïve, but I cannot for the life of me comprehend why these four grains, the very ones that contain gluten are the ones that appear to be pushed at coeliacs so often. It took me a long time to realised that it wasn't just the grains that were a problem to us all but all of the many derivatives that are often in foods but in disguise like maltodextrin often made from wheat and added to foods to sweeten them because - well presumably because it it cheaper than sugar - for what other reason could there be?

Here's the DS site with your bread listed to save you worrying: dietaryspecials.co.uk/glute...

The brown DS multi-grain is listed as containing the following:

Water, Maize Starch, Rice Flour, Rice Starch, Soya Flakes, Potato Starch, Buckwheat Flour, Soya Protein, Soya Bran, Rice Syrup, Vegetable Fat, Vegetable Fibre, Millet Flakes, Yeast, Sugar Beet Syrup, Sugar, Thickener: (*Hydroxypropyl Methyl Cellulose), Apple Extract, Salt, Calcium Citrate, Acidifier: (Citric Acid, Tartaric Acid), Folic Acid

efsa.europa.eu/en/efsajourn...

*Have added the link just in case you are curious!

xx

Celia profile image
Celia in reply toLynxcat

Thank you Lynxcat for that, and providing links and information about DS bread ingredients. From reading those ingredients it doesn't look too bad, although I'm no expert on matters such as maize starch. I know buckwheat is ok as it's not really wheat at all. All looks ok!

Yes it is very annoying that so called gf derivatives ie codex wheat starch, oats, barley, rye and malt are found in so many of our foods. I avoid them at all costs. I was diagnosed 4 years ago and am only just beginning to feel better.....I'd like to stay that way please! xx

Lynxcat profile image
Lynxcat

Hi Ellen, I think most of us are probably in the same situation. I started by a casual conversation with a nurse. I confided in her that I was suffering blood blisters in the mouth and she told me that she had them too and that they may possibly be linked to developing a wheat allergy. I was having a major operation at the time so wasn't in any kind of a fit state to do anything about it. I was so frightened at the time as my blood blisters once they started kept growing and shooting in all different directions. This meant I had to confide my problem both to the surgeon and also to the anaesthetist as I had a real fear that if one started whilst I was under that I may have choked to death. The anaesthetist told me something quite interesting he said it was not uncommon for people to be suffering with these type of blood blisters - but thanked me and said he would keep an eye on me.

Once I began to feel somewhat better I began taking wheat out of my diet. To my surprise the blood blisters went completely. I re-introduced it again and they came back. I must have done this around a dozen times because quite frankly, I couldn't believe a simple food item could cause such a problem. A few more years went by and I had to have a trip to the doctors for something unrelated so I mentioned the fact that I appeared to be allergic to wheat. There and then he arranged for a blood test - I didn't know at the time but he tested for coeliac disease. I was negagive to wheat but positive for coeliac disease ... I had not eaten wheat in the form of bread or breakfast cereal, etc for a very long time at this point - yet I was still positive. At this point, call me stupid, I really didn't believe that I could be a coeliac. I only after all had problems with wheat!

Amazingly, my main symptoms didn't appear for quite some time. I very occasionally had rye bread and once after a slice I became violently sick. After about another four months I had some more rye bread and this time I was not just violently sick but my mouth and throat lost part of its skin and felt badly scalded. I wretched and wretched and wretched for hours, my head banged for several days and I began to take my coeliac disease far more seriously. Foods that only I ate that contained any form of barley or rye were binned - I was still not eating wheat - I was however eating oats. After a further 9 - 12 months the blood blisters returned ... it was the oats. So I changed to the pure oats but picked up on tiny niggles and stopped the pure oats intending to just rest them for a while. I began to read up on oats, and on all of the other additives that contain gluten and slowly eliminated them from my diet. The difference in my health was amazing. Up until total elimination I would sometimes feel overwhelmingly tired for no apparent reason, I would get headaches and bone aches, dry patches, a dry cough, joint aches, odd pains here and there, jaw pains .. I won't go on. I presume that because I wasn't 100% aware of what a coeliac diet was and what gluten not only does but how it makes your body react - and because we are all individual all our bodies act differently - I didn't really understand that there was only one hope of total wellness and that was total elimination.

I have found that it is best to build up your gluten free lader bit by bit rather than all at once. Concentrate on things that you definitely know are safe: fresh vegetables, fresh meats, grains such as rice, quinoa and if it causes no problem millet, pulses such as split yellow peas, lentils, dry beans, fresh fruits, nuts and nut oils, if you can eat dairy then it is full of calcium and vitamins so milk, cream, butter, cheese, yoghurt ... then gradually add to them - ones that you like, keep a note of so that you purchase them regularly. Stock cubes can be an issue as some contain wheat - Kallo and Knorr are both gluten free.

Penel profile image
Penel

Ellen - the increased reaction to gluten seems to be common for a lot of coeliacs.

It would be interesting to know the science behind it.

I try to buy as few things as possible that come in packets with a list of ingredients.

Penel profile image
Penel

Wow Lynxcat! I can understand why you feel so passionately about gluten and getting the information out there!

Lynxcat profile image
Lynxcat in reply toPenel

Hi Penel, It seems to me that the only people who appear to help coeliacs and gluten intolerant are those who suffer from the condition themselves. The only way we can do this is to share everything we know to each other. Sometimes we trip over obstacles as we go but we all want the same thing in the end.

I have a feeling that we may see more stringent guidelines in the future regarding gluten as there appear to be growing numbers of people who have problems with gluten -

"The prevalence of celiac and gluten intolerance has increased significantly over the last 50 years. One study that was published in Gastroenterology compared 10,000 blood samples from individuals 50 years ago to 10,000 people today and found that there has been a 400% increase in the incidence in celiac disease.3"

The above is taken from the following website:

illuminateme.org/health/glu...

US numbers of diagnosed coeliacs from 1950 - 2003

celiacdisease.about.com/od/...

Perhaps because of rising numbers we can hope eventually of having more understanding and help with gluten and gluten labelling. Let us hope so anyway!

Lynxcat profile image
Lynxcat

I have found a piece of information in the form of a video, from the Mayo Clinic regarding coeliac disease and silent coeliac disease both of which are on the rise. I thought I would add it to this particular post. Please do not play it if you are currently feeling vulnerable or a bit depressed. It shows how allegedly people in the US were tested in the 1950's for coeliac disease without being informed about their condition - perhaps in the name of science - I've watched it through twice and I am still not sure why they allegedly didn't inform them. It also confirms that for some reason coeliac disease is definitely on the rise:

youtube.com/watch?v=DKwKQ7W...

Lynxcat profile image
Lynxcat

Another useful addition is the following that is from the Welcome Trust and has a feature regarding coeliac disease:

"Professor David van Heel is at the cutting edge of research into coeliac disease, a common and debilitating condition with no cure. Chrissie Giles spoke to him and other leading figures in the field . . ."

I have never heard this piece of information before and thought it may be of interest to some:

"It can prevent you from joining the armed forces."

"When a person with coeliac disease eats gluten, their immune system attacks the mucosa of the small intestine, preventing it from absorbing nutrients normally. The effects, such as severe diarrhoea and vomiting, can last for days. Contamination can come from things as seemingly minor as breadcrumbs in a toaster. Professor van Heel says that while there's no cure for coeliac disease, there is a treatment: a gluten-free diet. Such a diet can be tricky to manage, as well as being inconvenient (see box, right). "This isn't just a treatment," says Professor van Heel, "it's a morbidity in its own right."

If you are interested in reading the full feature - then here is the link:

wellcome.ac.uk/News/2009/Fe...

sassyl profile image
sassyl

Let's just put things in perspective before every newbie coeliac runs throwing up down the loo or giving up on the diet in desperation.

Yes, Lynxcat, there are some amongst us, myself somewhat included, who cannot tolerate Codex gluten.

Let's put the current EU legislation into what it really means:-

Wheat - all wheat MUST be declared; whether this is Codex, maltodextrin or plain ol' wheat. The label must state 'contains wheat'. Whether it be at 2000, 200, 20 or 2ppm, if a product contains wheat, sold in the EU, it must be labeled at such. This includes wheat maltodextrin.

200ppm - old skool - does not exist as EU labeling anymore.

100ppm - This is the new Codex standard. This food MAY contain wheat (but not always) and was the 100ppm LOW GLUTEN label was made to placate the manufacturers already catering for the constructed prescriptive coeliac market. Some of these company's products do not contain wheat, some of them do. Some of them do in some products, but not in all. eg. Juvela Harvest Mix, Glutafin Part-Baked Rolls, both wheat-free and less than 20 ppm.

20ppm - the standard, non-CODEX level for Gluten Free products. This does not, as Apricot suggested, mean that the product contains exactly 20ppm, but rather refers to a maximum amount of gluten. These products, to my knowledge unless someone can tell me otherwise, do not contain wheat. They may contain less than 20ppm gluten levels of oats, rye, or more likely barley. But never wheat, unless it's declared. This is your standard Supermarket bread, cakes, biscuits, and branded supermarket-sold products. DS Ciabatta contains no wheat, oats, barley, rye and is labelled 'gluten free', which means it is less than 20ppm. There is nothing in its ingredients that is gluten containing. Etc, etc.

Those who still find themselves affected at such low levels of gluten may take the step of removing all manufactured (but not monitored environmental) sources of gluten from their diets. These people would remove such items that were 'produced in a factory that uses wheat'. Again, this needs to be declared on the label. Such items are Cadbury's, Walkers, Kettle Chips. These people also need to watch out for contaminated beans, pulses, rice, corn, buckwheat, etc, as they are hyper-sensitive.

Several people throughout the post have highlighted that they are quite happy limiting their diet to 200/ 100/ 20ppm and have raised the point of feeling 'preached at'. I feel that coeliac disease is similar to scale of autism; whilst there are some people/ children who are able to access mainstream, there are others who need more specialist care and education. As a mainstream teacher I have taught many autistic children who have suited the mainstream curriculum very well and gone on to make successes of themselves. I have also experienced those with more profound difficulties for whom more specialist provision was a way forward. Similarly, there are those of us with coeliac who are able to tolerate Codex, and there are those of use who cannot. Unfortunately, it is a self-determining lifestyle for us Coeliacs, one we must evaluate over the course of time. We are all on a scale.

Personally Lynxcat, I find your posts of late on the evangelical stance of coeliac. I think there needs to be a market out there for the majority. And rather than scaring off the entire catering and food manufacturing industries (who more likely than not will resort to the Walker's/ Cadbury mentality of 'cannot be guaranteed gluten free') I would like to see an industry culture of 'Gluten Free' commercial labelling meaning that a food item is guaranteed less than 20ppm, which is exactly where we are now. 10/ 15 years ago there was very little in the mainstream market for those with food intolerances. And whilst I am stating my stance, the FreeFrom aisle, albeit welcome, is not the sole domain of the coeliac; the lactose intolerant, the nut-allergists, the vegans and the just-plain-wheat-free shop there also, so if you are looking for gluten free products read the label as you would elsewhere.

If you feel you are further up the coeliac scale (as do may of us) then you have to make you own adjustments therein. I expect though Lynxcat, again like me, that you have had some time in which to contemplate and formulate your conclusion, based on your own personal experiences. This does not make your diet, the best, the once-size-fits-all or the expedient for a new EU law, one that was carefully thought out to represent the majority.

Lynxcat profile image
Lynxcat in reply tosassyl

I am disappointed that you feel the need for this kind of approach when you have decided to comment on one of my posts - it is rather like a personal attack.

My posts are not personally addressed to you. They are all general and as you may have noticed, I always try to add links so that those people who may find them of interest may read the extra information on the link if they wish to do so.

There is no getting away from the simple fact that gluten even in small quantities, will damage the villi and if gluten is consumed regularly it can lead to permanent atrophy.

"Coeliac disease is an intolerance to gluten in food.

Even small amounts of gluten can damage the lining of the small intestine (bowel), which prevents the proper absorption of food nutrients.

There is no cure and a lifelong gluten-free diet is the only way to manage the condition.

Damage can occur to the small intestine even when there are no symptoms."

betterhealth.vic.gov.au/bhc...

"To stay well, people with celiac disease must avoid gluten for the rest of their lives. Eating even a small amount of gluten can damage the small intestine. The damage will occur in anyone with the disease, including people without noticeable symptoms."

"Some people with celiac disease show no improvement on the gluten-free diet. The most common reason for poor response to the diet is that small amounts of gluten are still being consumed."

digestive.niddk.nih.gov/ddi...

I know that the effects of eating the 20ppm gluten is alleged to only affect the first part of the small intestine in the duodenum which contains least of all the villi. That said it is still a major part of the digestive system as it is believed that this is where the majority of iron is absorbed.

As far as I am concerned - if a person has coeliac disease then they have only one course of action that is sensible and that is the cessation of gluten. To take any other course of action will ultimately cause other health issues to arise.

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