A few years ago it was only a few way out, wacky souls – Dr Peter Osborne and his Gluten Free Society in the US, Micki Rose and a handful of nutritional therapists in the UK – who were suggesting that maybe ‘classic’ coeliac disease (reacting only to the gluten in wheat, barley and rye) was not the whole answer. Could the many people with unresolved health issues, and those coeliacs who failed to get better on the standard gluten-free diet, have some sort of sensitivity or intolerance to all forms of gluten found in all grains, not just to the specific protein fraction, gliadin known to be implicated in classic coeliac disease?
Now, all of a sudden, this notion seems to have gone all but viral, thanks to a seminal paper published in October 2012 and involving virtually all of the great and the good in coeliac research – Spectrum of gluten-related disorders: consensus on new nomenclature and classification. By November even the august and far-from-far-out BMJ (British Medical Journal) had clambered aboard the bandwagon. Professors Imran Aziz and David Sanders are found combing the literature once again to discover whether ‘gluten sensitivity in the absence of coeliac disease exists’. (For a helpful comment on this research see Dr Briffa’s blog). On the same day a lengthy correspondence appeared between consultant physician Kamran Rostami and a patient who had finally resolved 20 years of ill health by excluding both gluten and lactose from his diet.
And more developments are expected soon as Dr Alessio Fassano, coeliac expert and leader in this area, told About.com just a few days ago. He hopes that a clinical trial now underway will identify some sort of biomarker for non-specific gluten sensitivity which will enable a diagnostic test and thereby much earlier intervention. As he goes on to say, this would not only have implications for those with physical health problems, but for those with behavioural conditions such as autism where a vocal minority have long claimed that gluten and casein were heavily implicated in breaching the blood brain barrier and causing the autistic disconnect.
(If you want to know more about autism and the gluten/casein-free diet see the free download page on the ESPA research site. For a ‘real life’ example of how it works see ‘The Story of Matthew, Luke, Joe and Ben’.)
It is, of course, no great surprise that it is the medical profession who are the last to catch on to the fact that gluten might have health implications outside coeliac disease. The nutritional therapy world, have long had their suspicious of gluten while, attributing their own ill health to an over consumption of gluten – and following in the footsteps of medical gurus such as Victoria Beckham, Gwyneth Paltrow and Novak Djokovich – the ‘eating public’ have been busily excluding it from their diets for some time.
Meanwhile, food manufacturers, seeing the way the wind was blowing, have put some serious work into developing wide ranges of excellent (sometime better than the originals) gluten-free foods which, in turn, have merely swelled the ranks of those eating them. Would-be gluten excluders can now get lots of tasty and delicious alternative gluten-free foods so going gluten-free is no longer even a penance.
In fact one has to wonder whether it is gluten sensitivity that is so much of an issue as gluten excess.
Over the last 50 years, wheat has been bred to include ever higher quantities of gluten as gluten is such a useful product in food manufacture. Since the invention of the Chorley Wood Bread Process in the 1960s, bread has been made with higher levels of high gluten, highly processed wheat which is never left to prove properly (thus leaving the gluten at least partially un-metabolised). And since the arrival of the ‘Mediterranean diet’ the average person’s daily diet includes high gluten wheat for virtually every meal: cereal and toast for breakfast, sweet biscuit with morning coffee, pizza for lunch, piece of cake or biscuit for tea and pasta for supper!! (Not, be it said, what a true Mediterranean would see as ‘their’ diet…)
Interestingly, even the medics have cottoned on to this one. This is the last paragraph of the seminal paper mentioned above:
‘Additionally, gluten is one of the most abundant and diffusely spread dietary components for most populations, particularly those of European origin. In Europe, the mean consumption of gluten is 10 g to 20 g per day, with segments of the general population consuming as much as 50 g of daily gluten or more. All individuals, even those with a low degree of risk, are therefore susceptible to some form of gluten reaction during their life span. Therefore, it is not surprising that during the past 50 years we have witnessed an ‘epidemic’ of CD and the surging of new gluten-related disorders, including the most recently described GS.’
I rest my case…
If you want to investigate the relationshiop between gluten and ill health in more detail, check out Micki Rose’s article, No grain, no pain, and all of the TrulyGlutenFree site, a good article on GreenMedInfo.com and material on the Gluten Free Society site. If you are interested in the gluten/casein-free diet for autism you might want to check in at Paul Whiteley’s Questioning Answers blog.
Better late than never but remember all grains also contain starch which I cannot metabolise due to insufficient enzymes and stomach acid. There have to be others like me. My life has been transformed by taking Kirkmans Carb Digest with Isogest with every meal. Why do the best supplements come from abroad, and why the reluctance of our medics to accept what is glaringly obvious even if they do not have a test.
Great summary, thanks Michelle. I must admit to a very pleasant feeling of vindication (read: smugness!).
Thank you for being one of the people who believed in what I was saying even if it did sound ‘way out and wacky’; I was just reporting really on what I was seeing personally and professionally. There had to be some reason so many coeliacs do not heal despite a traditional gluten (read: gliadin) free diet and, frankly, I got annoyed with them being told it was just because they were breaking their diet. And, there had to be something else going on with gluten/grain fractions for all those people coming up negative on standard coeliac tests who got so much better on a GF/GrF diet.
It was the frustration of seeing people’s experiences dismissed because they didn’t fit set diagnostic criteria or get well following a specific set of dietary rules that spurred me on and I am glad that, finally, we seem to be having some acceptance that they were right all along. Our bodies tell us what is wrong and we do well to listen and trust in our instincts whilst science catches up.
Well, absolutely ALL credit goes to you, Micki, for having stuck your neck out in the first place with your ‘wacky’ theories – and then justified them!! I think that what you have done with TrulyglutenFree is just fantastic and totally justified by the number of those who are now following your Barrier plan and at last starting to feel that they might have got a handle on their ill health!
That is such good news about your digestive enzymes, Jacquie. Do you think you could persuade your nutritionist lady to write something for us about carbohydrate digestion?….
Thanks Michelle, that is so kind.
Re Jacquie’s enzyme success, SO pleased to hear it. Digestion and absorption is always part of the picture. It does rather suggest that she is not that grain sensitive because most of us TGFers can’t tolerate the enzymes as they are invariably fermented with corn sugar even though we get the ‘none left in the finished product’ claim back every time, which doesn’t stop the reaction. I note that the Kirkman’s product must be as it doesn’t state free from corn and they are one of the best labellers.
A real pain in the proverbial anyway! I’m sure if we all could, it would indeed help enormously: a catch-22 situation. All power to your elbow, Jacquie. I look forward to the day I can take them.
Every time I eat gluten free porridge, though it omits the headache and puffy face it is almost like I feel depressed and get very bad tempered – is this just a temporary thing like detox.
I think we have to make a clear distinction between:
1. non-coeliac gluten sensitivity – sensitivity to gluten in the confirmed absence of coeliac disease, and
2. sensitivity to protein fractions in non-gluten grains (corn, rice, millet etc.) in the presence of coeliac disease.
It is the first of these which Fasano and the BMJ et al are exploring and talking about – and it is the second which Micki’s Truly Gluten Free program is based on.
I’m afraid I don’t yet see any vindication for part 2 in the BMJ / Fasano – although it would not surprise me in the slightest if it turns out that a small percentage of coeliacs also do react to the proteins in corn or quinoa, say (which are not considered ‘gluten’ in the scientific community; and the calling such of which I feel confuses matters), much in the same way a small proportion appear to react to pure oats.
I also slightly disagree with the notion that the medical profession are necessarily ‘slow to catch on’ to the idea of gluten sensitivity. Science and medicine has to some extent be considered and slow and be sure of its position – too quick, and you run the risk of having to backtrack later, and of making alarmist and ill-founded declarations, such as that coffee is unsafe for coeliacs, which the ‘truly gluten free’ community in the States made last year. I see little criticism for that appearing online, and yet it is far more richly deserved.
As with ‘allergy’ and ‘intolerance’, I can see that the term ‘gluten’ is set to cause limitless confusion….
In the coeliac world ‘gluten’ is equated with gliadin, the protein fraction in wheat, barley and rye that triggers the autoimmune condition known as coeliac disease. Yet, according to the OED gluten is ‘the nitrogenous part of the flour of wheat or other grain which remains behind as a viscoid substance when the starch is removed by kneading the flour in a current of water’. A definition that would be certainly accepted by food manufacturers who are busily experimenting with other grains as wheat alternatives.
So, according to the OED definition, ‘gluten’ is found in all grains; but its concentration, protein content and other chemical constituents may vary according to the grain concerned – the protein fraction gliadin in wheat, for example, hordein in barley, avelin in oats – and those are only one amongst many in a complex chemical whole.
So are Prof Fasano and colleagues actually only investigating whether gliadin can cause problems in those who do not have the boimarkers for ‘true’ coeliac disease or are they investigating whether other protein fractions found in the gluten to be found in other grains could be implicated? (Incidentally, while corn is a grain, quinoa is not a grain but a seed.) If they are not, maybe they should be….
While I completely agree that the medical profession should not chase after every latest scientific fad, I do think that, in general, they remain extremely conservative in their thinking. Coeliac thinking has really not developed much since the initial (and possibly flawed) conclusion, post the Dutch starvation in WWII, that it was only wheat, barley and rye (the only grains that Dutch coeliacs had been deprived of during the war) that caused coeliac disease. Or, in a totally different field, Prof Abram Hoffer treated schizophrenia, extremely successfully, with high doses of niacin for over 50 years before this cheap, harmless, effective and side-effect-free treatment was even considered as an option by the mainstream psychiatric community.
Just to clarify there, my TGF plan is not just based on the idea of grain protein sensitivity in coeliacs. Certainly it started there with why so many coeliacs in-clinic were not getting well but improved dramatically on a grain free diet: could it be other types of gluten and not just gliadin causing the damage? It seemed likely based on the history that Michelle mentions and the fact that we used to successfully use a carbohydrate free (ie grain free) diet before the 1950s gliadin trial.
But, it has developed into a premise that anyone can be grain sensitive, coeliac or not, and that it is likely that other fractions of the grains could be causing the trouble, certainly not just the glutens and nor even just proteins. I have seen many react similarly to starches and sugars derived from or fermented on grains.
It is really complex and I don’t think we are anywhere near unravelling it all yet. If we continue just to look at gliadin, we are doing a disservice, in my opinion, to all those with true grain/gluten sensitivity, coeliac or not. That makes us ignore anything that isn’t gliadin-related, and then we only tend to look at one type of gliadin when there are several. What happens if the person isn’t sensitive to gliadin 33-mer?
It is nice to see the research community broadening it’s brief a bit finally ; there are many of us that don’t currently fit into the coeliac/gluten/gliadin diagnostic criteria but still feel so much better when we give up grains, I certainly don’t know fully why that would be yet but I am betting my bottom dollar that there is a gluten illness spectrum, that coeliac disease is just one auto-immune consequence of the gluten damage, the one that attacks the villi, that 33-mer gliadin is involved in that particular process, but that there are tons of other mechanisms and processes going on. It will be fab to find them all out, but, for now, I mostly advise trial removal of grains because, as always, I will trust the body’ answers more than the science we just happen to have done to date.
Re the coffee cross-reactivity issue Alex mentions, that was originally based on immunology research done in the States and I believe new research has been done by the same team and it is going to come down to cross-contamination. Evolving research – as a science man, you can’t diss the fact that people find new things out and then alter the advice accordingly; that’s surely what we do all the time! You won’t have seen any criticism of it anyway because it hasn’t been released yet.
An exciting time in gluten medicine and it evolves pretty much daily!
I suffer with Interstitial Cystitis. A chronically inflamed bladder with no infection present. When Micki suggested ditching gluten and dairy that I’d been happily eating for each of my 43 years I was sceptical. However she was right! For years Drs have been declaring there’s no cure for IC. For years they’ve been subjecting IC patients to awful invasive procedures / long term antibiotics. There isn’t a pill you can take BUT as there are typically more mast cells found in an IC patients bladder than in the bladder of a ‘normal’ person, it makes sense that allergies are to blame. After 14 months IC free I had a flare up over New Year. I’ve been gluten and dairy free since Jan 1st and am boosting the healing process with acidophilus and supplements. I’ve now had a week clear of symptoms and I continue to feel better . IC is very badly misunderstood and misdiagnosed. It causes untold suffering. Please tell the Urologists and shout the gluten free message from the rooftops Micki. So many people need to know that they CAN manage their symptoms with good support!
Hi Helen – and delighted that gluten/dairy seem to be the answer. I know that Interstitial Cystitis is a horribly intractable condition so this is really good news.
For another unexpected benefit of going gluten free see this fascinating article in the NY Times about a three-year-old whose juvenile idiopathic arthritis was completely resolved by following a gluten-free diet.
My point is that in all the studies / papers / discussion mentioned in paragraphs 2 and 3 of Michelle’s post, the gluten to which all the experts are referring is the traditionally accepted wheat/barley/rye gluten. If, as the title says, ‘non-coeliac gluten sensitivity’ is gaining recognition – which I agree it seems to be – it is sensitivity to this wheat/barley/rye gluten in the absence of CD that the studies and experts are referring to and are giving recognition to. So, I’m struggling to see how this has anything to do with ‘truly gluten free’ / grain free. There are no new papers on this here, and neither Fasano nor Sanders and colleagues are referring to zeins or orzyns in corn and rice etc.
Apologies I didn’t represent the TGF plan accurately, Micki.
I do struggle with the importance being placed on the 1950s here. Yes, there was the banana diet and that had success when grain was excluded, but it was before coeliac disease was fully understood. The Dutch study did not conclude that ‘only’ barley, wheat and rye triggered symptoms: it just concluded that those three did, without any implied exclusivity. Subsequent studies – really there are many through the decades – confirmed these grains problematic, and other grains safe. Often where there has been confusion / doubt it has come down to cross contamination – as in the case of a corn study of a few years ago.
I have no reason to doubt that there are coeliacs out there who react to corn, rice and so on, but I would expect the figures to be very small – hence why we have not found good evidence for it (unless you can point me to some papers?). And it is coeliacs I’m interested in here: because it is they who rely on these grains far more than wheaties like myself, and any notion of their being not gluten-free and potentially not safe for them is scary to them.
Re: coffee, no, I can’t diss the fact in principe that people find out new things and alter advice, but that research was not published in a peer reviewed journal and yet it found itself spreading around the web like wildfire, often generated by people selling related medical tests and with a vested interest in its truth being confirmed, with huge numbers of coeliacs alarmed by it. Research has to be repeated and verified and dissected and debated before advice can be altered, otherwise you’re constantly chopping and changing and confusing people.
I am particularly interested in the link between non coeliac gluten intolerance and lactose intolerance. This appears to personally apply to me. Even the otherwise unhelpful gastroenterology consultant agreed that there needed to be more clarification and research into the links between lactose intolerance and gluten intolerance. Surely lactose intolerance can occur due to the damage caused by coeliac or gluten sensitivity? However, it is also known to exist on its own through lack of lactase production. Is the production of lactase triggered by lactose consumption or does it diminish over time in all of us and only those with other sensitivities feel its ill effects? Does anyone have any more information on this angle?
Hi Emma – The production of lactase is triggered by lactose consumption but, we are genetically programmed to stop ingesting lactose at the point that we are weaned so continuing to produce lactase to digest the lactose that we choose to ingest after weaning is an adaptation performed by the body more or less unsuccessfully depending on the individual. Our ability to produce lactase is certainly impaired by gastrointestinal upset (such as a bout of gastroenteritis) so it is logical to assume that it can also be impaired by the digestive damage done by coeliac disease or non-coeliac gluten sensitivity. Similarly, since digestive function tends to disimprove with age it is logical to assume that our ability to produce lactase will do also.
Are the symptoms of non-coeliac gluten sensitivity the same as having coeliac gluten sensitivity. What if any are the differences. I think I could be non-coeliac as I have noticed a lack of headaches and a puffy face when I omit gluten.
Thank you Michelle. That all makes sense. However, it does make the advice given to me by my consultant more difficult to adhere to. He suggested that if you are truly lactose intolrant all you need to do is drink a glass of milk and if within an hour if you are rushing desperately to the toilet you are intolerant. In my mind (albeit non medically qualified) I would assume that there are varying levels of tolerance and especially if assessing whether lactase deficient from birth you would need a better test.
I wonder how many people remain lactose intolerant permanantly after the damage done by coeliac or gluten sensitivity. I have been told that in most cases lactose intolerance is temporary. Do you know if many of your subscribers exclude lactose after diagnosis and have they then reintroduced it when other symptoms improve? Or is it recommeded by medics to exclude dairy entirely when diagnosed? It interests me most as I require products to be both gluten free and lactose free (I am still to determine whether I need to be entirly dairy free). Manufacturers appear to create gluten free products without considering lactose or dairy content and I wonder if this is because there is no market or because its too difficult and not cost effective?
Hi Janet – My understanding is that you can have almost any symptoms with non-coeliac GS (as you can with coeliac disease) the only difference being that you do not have the intestinal damage caused by classic coeliac disease – but I am absolutely not an expert….
Hi Emma –
Blimey – that is a bit approximate, isn’t it – and shows how little your consultant knows about lactose intolerance!! Lactose intolerance can manifest in a whole range of symptoms, many of which have nothing to do with digestion – and there is a perfectly well recognised test for diagnosis – the hydrogen breath test – which does not involve you going anywhere near milk!! There are a couple of excellent articles on the FoodsMatter site (A Sugar Not So Sweet – a story of lactose intolerance and Lactose limits) by a couple fo doctors, one of who suffered from very severe intolerance. I think you might find them very interesting.
Given that the production of lactase (to enable you to digest the lactose) is only adaptive behaviour anyhow I would would imagine that whether coeliac induced damage tot he the intestine will prevent your system producing lactase again will depend entirely up the the individual patient.
As far as I know, there is no recommendation to exclude dairy/lactose when diagnosed as coeliac but I am not an expert in this area.
Many manufacturers do limit themselves to gluten-free as that is where they perceive the major market to be although there are an increasing number who are looking to exclude both gluten and dairy from their products thereby giving themselves a wider reach. Those who choose to exclude gluten and dairy (as opposed to those who need to do so for medical reasons) are quite more likely to want to exclude both which is widening the market. It depends very much on the individual product whether it is either more expensive or more difficult – but you will be glad to hear that there are an increasing number of products that do exclude both!
Thanks Michelle, it’s reassuring to know that I wasn’t the only one to think his advice was unhelpful (to say the least). I will have a look at the links you have suggested.
I’m quite sure that the public who choose to exclude both dairy and gluten may include many who have been told they have IBS. My opinion is that they may have been tested for coeliac and IBD and when the results have come back negative they have been written off to make their own journey, like myself.
I look forward to the results of the Free From Awards and hope more manufacturers listen to my pleas for both dairy and gluten free products.