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THE subject of gluten generates strong opinions. We all know someone who has gone gluten-free, not always for the medical indication of coeliac disease.
For those convinced it is a fad, talk of gluten-free leads to exasperation and annoyance over why someone chooses to be so precious. For those who feel better after removing gluten from their diet, the lack of supportive evidence is irrelevant – personal experience is far more compelling.
Is this a social issue or a medical problem? What role should we play as medical professionals?
The popularity of the gluten-free diet is part social phenomenon – an example of how effective marketing and social media can transform a specific medical treatment into a “healthy”, and important, lifestyle choice. Best-selling books, celebrities and social media have all promoted this branding.
- Related: MJA — Food avoidance: some answers, more questions
- Related: MJA InSight — Susan Hookey: Coeliac vigilance
The lack of evidence hasn’t stopped a good story. The impact of these influences is very real, especially in the US. A third of Americans are trying to cut back on dietary gluten, key drivers being the perception it is “healthier” or will assist with weight loss, both of which are false. The gluten-free diet is not nutritionally superior.
In Australia, the situation is different, and the fad aspect far less pronounced. Here, 10% remove dietary wheat, the major source of gluten. For most (7%), the motivation is the presence of adverse symptoms, mainly gastrointestinal. Lethargy is also common. Most would identify as being “gluten sensitive”. Irrespective of consumer motivation, rising demand has driven a thriving gluten-free industry.
The good news for coeliac disease sufferers is their treatment is now easier and more affordable than ever.
The rise in the gluten-free diet also reflects an evolving medical landscape. Coeliac disease prevalence has risen fourfold in the past 60 years, paralleling the rise in other autoimmune, allergic and inflammatory disorders. While it can have significant health implications such as osteoporosis, autoimmune complications and malignancy, expeditious diagnosis and treatment improves outcomes.
Familiarity with testing guidelines is the key to increasing detection beyond the abysmal rate of one in five affected Australians currently diagnosed. People going gluten-free before testing is common and impairs the accuracy of current diagnostic tests. Here, human leukocyte antigen genotyping is useful to exclude coeliac disease if the susceptibility genes are absent.
So where does gluten sensitivity fit?
There is a paucity of evidence to support it as a distinct medical entity – here Google is far more informative than PubMed. The absence of biomarkers means diagnosis is based on patient self-report, which is unreliable. Gluten is likely responsible for only a small percentage of symptoms in people who report being gluten sensitive.
Major Australian research has shown that other cereal components, notably the fructans in wheat, a type of fermentable carbohydrate, are likely to drive a significant proportion of symptoms patients attribute to gluten (although gluten was associated with feelings of depression). Removing dietary gluten tends to reduce these components as well, potentially explaining the dietary benefit. Other cereal components are now emerging as potential triggers.
Gluten may indeed be an innocent bystander in many, if not most, of the cases of patients carrying the “gluten sensitivity” label. “People who avoid wheat or gluten” is a suggested replacement term that reflects our inability to define this group, but is unwieldy and unappealing to patients.
Right labels can be powerful. To clinicians they provide a specific management path. To patients they give form to the years of suffering endured without a diagnosis, and validate the legitimacy of their symptoms. Unfortunately, “gluten sensitivity”, while convenient, is an inaccurate and arguably unhelpful label.
- Related: MJA InSight — Gluten-free definition concerns
- Related: MJA — Modifying the gluten-free threshold for foods: first do no harm
Irrespective of how we define this group, it is clear they need medical care – two-thirds have not had coeliac disease adequately excluded, and almost a third have persistent symptoms despite removing gluten. A formal diagnosis of coeliac disease will require specific treatment and systematic medical follow-up.
The knowledge void makes for difficult clinical encounters. Doctors are dismayed by the lack of evidence, are annoyed by patients who favour unproven approaches, and can come across as uncaring. Patients, frustrated by what they perceive as a dismissive attitude by the medical profession, turn to self-diagnosis and alternative practitioners.
Ultimately this situation will be resolved by research that defines mechanisms and triggers to guide optimal diagnosis and care. In the meantime, clinicians should maintain an open and compassionate approach and ensure thorough medical work-up to exclude illnesses that have specific treatments.
Dr Jason Tye-Din is a Melbourne gastroenterologist. He is Laboratory Head of the Walter and Eliza Hall Institute of Medical Research’s Immunology Division, and is also affiliated with the University of Melbourne.
I was diagnosed with Coeliac Disease approximately 15 years ago. I am one of the more fortunate people who don’t get drastically unwell if I do accidently ingest some gluten. I was, however , accidently given a normal pizza base recently and the toilet and I became great friends until it was all out of my system!! I don’t have a huge issue with people that tell me they feel healthier and better when they don’t have gluten in their diet. What I do strongly object to is being with people that tell me this and then order a meal or snack with gluten init because they liked that choice better than the gluten free options. I witness this often when I am out for dinner especially.
Luckily there is research into the gut microbiome that links dietary changes with more than just intraluminal consequences. The effects of the gastrointestinal microbiome on inflammation, immunity and even mood are being studied, but not in volumes seen when pharmaceuticals are researched.
It’s not rocket science that the generational effects of antibiotic exposure, overly hygeinic and clean home environments, less contact with the land, modern diet and lifestyle, plus stress of all kinds are going to impact health in general ways, including epigenetically. It is also pretty obvious a lot of those effects are going to be symptomatically identified as gut related. I would counsel against dismissing and prejudicing patients because of their “fad” beliefs about gluten etc. Low fat/No fat was a fad we as a profession supported, so we have no high horse under us.
It is clearly not just gluten buggering up everyone’s guts. Perhaps when gastroenterologists consider the gut microbiome of equal or greater standing than the endoscope, we may be able to offer a better answer than “it’s IBS”, or “it’s not gluten – that’s a fad”.
People are prepared to invest amazing effort and go into great detail to find answers for their problems. That’s what happens when the medical profession can’t really help. With great caution, we also should not dismiss when patients are telling us a story. Those stories mean something that may last longer than the 3 year lifespan of our medical algorithms.
Excluding a large and important food group (grains) that has been the mainstay of human diet for many thousands of years including the wonderful grass seeds used by our own indigenous people in their breads and dampers makes no logical sense to me. We have scientific validation of the health benefits of whole grains. Excluding this group is NOT a healthy choice as some would argue and has nothing to recommend it without clear evidence of a condition such as coeliac disease. Compare this to the “palio” diet with no scientific validation. Even the premise that prehistoric man avoided grains is preposterous as seen by the documented and health diet of our own indigenous.
HI all
I greatly respect western medicine and its intent to support the health of mankind. I know the vast majority of doctors want the best for their patients. It is however time, the patients did take more responsibility for their health and this includes working out from the response of the body what does impact us, whether its late nights or gluten or stress- everything is registered by our body in some way. The only time we miss this vital clue is if we are so caught up and distracted by our own thoughts, then we can easily ignore what the body is registering. mediicne has got to get back to basics of recognising the body will tell us enormous amounts of individually tailored data if we value what we are being told, and take the time to listen- we cant keep overriding how the body feels. For example, after one puff of a cigarette, the body gives us a clear indication that its not good for it- the couging, the foul taste etc etc, why do we as a speciies need research to tell us that smoking is harmful when its so blatently obvious that it is? This is a very simple example but it makes a point. same with alcohol, why do we need more than one hangover to tell us the body doesnt do well from alcolhol? Alll the research in the world cant change and shouldnt override this simple fact from the body.
Thank you, for considering this perspective,
Felicity
Since the 1970s I’ve seen a long series of diet related health concerns come and go in the common mind. There was Hypoglycaemia; there was poisoning by plants in the Solanum family (tomatoes and potatoes etc); there was lack of Fibre. Now it’s Gluten Sensitivity. Each “problem” is seen, in it’s era, as causing multiple health problems (lethagy always being a major symptom), and books and speakers spruik the dietary solution. Lots of people follow the prescribed diet and feel much better. Many of the diets have advised mutually contradictory components, but each is embraced for a decade. What will the next one be? (Perhaps we lack reptiles in our diet; may be caterpillas are essential – who knows?)
Hi, Kevin. The problem with doing an uncontrolled trial on your own body is that you don’t know whether the change was due to the intervention, or some other confounding factor. Again, OK for individuals, but not for health care providers who need good evidence to help their patients.
Hi there,
I echo the sentiments of Felicity above, in then end, the untimate and only true trial is that of your own body, all else is in fact an approximation at best.
Kevin
Hi, Felicity. Your personal experience is, of course, meaningful to you, but it can’t be the basis for the other clinicians reading here to help advise their patients. We need to understand both the science and the research in the area – whether altering diet in a particular way has measurable benefits, or whether there are other influences. Many people feel better cutting out wheat because they lose weight. Others feel bad eating whole grains because they aren’t used to the fibre bulk.
The well-studies Mediterranean diet contains all the fresh foods you describe, together with a wheat-based staple – pasta and/or bread. The lifestyle combines a minimally processed with physical activity. People can feel better, having made these dietary changes, without eliminiating gluten.
I appreciate articles like this, from people with a deep understanding of the research. I go back to the closing paragraph: ” Right labels can be powerful. To clinicians they provide a specific management path. To patients they give form to the years of suffering endured without a diagnosis, and validate the legitimacy of their symptoms. Unfortunately, “gluten sensitivity”, while convenient, is an inaccurate and arguably unhelpful label.”
Thank you for all the great work you’ve done Dr Tye-Din especially over the past decade, bringing greater awareness of Coeliac disease to the general public and medical community. At the time I was diagnosed, I was very ill and had been for many years. It took more than 5 years to reach this diagnosis because it wasn’t something any of the GP’s I saw even thought to test for. Luckily this aspect of medical care has changed. I have 4 other auto-immune disorders and other health issues that I think I may not have developed if I had a diagnosis much earlier. I know many people who have a low/no gluten diet, mainly for better digestive health. They aren’t coeliacs and they are all very aware of the disease and have had the blood test. They just feel better without gluten in thier diets. I don’t see how this is a medical issue for doctors. Without a coeliac disease diagnosis it’s just a dietary preference like being vegan etc. I would prefer if GP’s eliminated delayed diagnosis of this disease by testing routinely like they do in some European countries.
I dont have coeliac disease, but i feel so much better for excluding gluten in my diet I would never go back to the stuff. After 35 years of bowel disharmony and lethargy, I just wish I had on known sooner that removing gluten would make a big difference in my body. I dont care what research says if it is insensitive to how I feel every single day. How I feel matters, and now I enjoy life so much more- essentially I am my own ‘evidence.’ Surely this is reasonable? Just out of interest, i dont feel like I go without, I dont suffer from lack of gluten laden food, my diet could not be healthier, lean fish/meat/ green vegetable, surely in this increasingly overwieght world, this is something the medical community should be celebrating instead of lamenting the wilingness to make such healthy food choices.I also feel empowered by knowing clearly from my body what works for me, again, being responsibly self determining should be celebrated – if I became ill in any way of course I do seek and respect medical advice. http://www.unimedliving.com/food/gluten-free/what-is-gluten-sensitivity….
Good article & links Dr JTD, very helpful. I was at the presentation you made at the gastroenterology seminar a couple of weeks ago, you bring clarity, the science and compassion to this issue.Unlike the comment made after by a reader, it is never too late for anything and expressing such negativity, stereotyping and having such a dismissive attitude, will only drive our patients (and others around us) further away from us into the more approachable arms of the unqualified.Mario D’Cruz
Unfortunately Dr Tye-Din it is much too late to be worrying about ”self diagnosis” (Dr Google) and ”alternative practitioners” (yes an oxymoron – “alternative quacks” is the correct term) as possible outcomes of honestly speaking the truth to patients about absolute nonsense diagnoses. Thirty years of forelock tugging and ignoring the threat by the quack industry has now reduced primary care to nothing more than an economic battleground of basic survival. The Chemists have already thrown the towel in with shelf upon shelf of nonsense ‘natural’ health products being validated by their active duplicitous marketing and AHPRA (thanks to the Labor Party) now happily registering quack chiropractors, quack osteopaths and Chinese herbalists, and the Government of this country even rebates them with tax-payer dollars! They happily sit on the register alongside doctors, nurses, physiotherapist etc as though there is equal validity in the nonsense they pedal. The battle is lost, this really is the new Middle Ages and there is nothing that can be done to stop the multibillion dollar “Natural” Pharma giant as it has all developed world governments in its pocket. eg The Health Ministers failure to act on recommendations of its own Senate inquiry in 2015 and the UK Government actually adding Homeopathy to their NHS List a few years back.
Every anti-vax, herbal gulping, diet fadding patient should be given a copy of the Becker CD as a matter of course as they leave the surgery. The Truth Shall Set You Free.