Saturday, May 10, 2014

Posting after a hiatus of 7 years: on gluten!

Digesting and contesting the concept of gluten

This month there has been a flurry of commentary on gluten. The Facebook group Food Inc. on 7 May posted an article on what many see as the 'gluten free fad'. I thought about it for a while. It is of a recent episode of an American comedy show hosted by Jimmy Kimmel which canvassed vox pops of health-conscious LA residents, asking them if they eat a gluten free diet. When they each answer in the affirmative, the interviewer asks "what is gluten"? They each go on a few tangents about grains, but do not directly answer the question, failing to satisfy the standards of Kimmel and his giggling studio audience. More recently on 27 May in the Sydney Morning Herald, Sarah Berry covered some of the scientific debate on whether gluten intolerance is in fact FODMAP intolerance.

I sympathise with these jogging, vague health enthusiasts, in a similar way that I sympathise with anyone bumbling their way through the world and trying to listen to their bodies adequately and form convictions based on gut feelings (in my case, literally). Unlike some of the people on the video, I can tell you that gluten is a protein that seems to react with many peoples' immune system - but I don't believe this technical understanding alone validates my use the concept. I think knowledge of one's body is valid in its own right. 

I have avoided wheat for 12 years, and now I avoid more than that. Back then I was constantly fatigued, and felt less tired than usual after eating a lunch of rye bread and vegetables, and my friend Dom who had prepared lunch suggested I try eliminating wheat. This helped, but many other problems persisted. After being diagnosed with Crohn's disease last year, I avoid many FODMAPS- forms of carbohydrate that apparently ferment in my inflamed small intestine. This diet is based on peer reviewed evidence from Sue Shepherd of Monash University. [Update, after working with the dietician, I have reintroduced most FODMAP groups into my diet, and mainly avoid wheat fructans and mannitol (mushrooms), eating other groups such as beans/ galactans in moderation, taking lots of probiotics such as home made sauerkraut, home made SCD yogurt, home made fermented buckwheat pancakes, spelt sourdough, anti-inflammatories such as turmeric, apple cider vinegar, green leaves, gelatine and chicken bone/ cartilage broth].

While my current belief about what is going on in my body is supported by my dietician, my GP and my gastroenterologist, I haven't always had supportive doctors, and I've had plenty of sceptical friends and acquaintances. My current understanding is that the thing that is reacting with my small intestine is not gluten, but wheat fructans which along with some other forms of fructose, galactose and other sugars that my body cannot digest. But it is much easier to say to people "I eat gluten free" because now there is an awareness in broader society- particularly in restaurants, of what gluten is, so long-winded explanations about wheat flour are no longer as effective as asking whether a food is gluten free. 

Lampooning adherents of Gluten free diets has certainly stirred the hornet's nest. One comment on a similar meme on the “I fucking love science” Facebook page says "And all the hippy earth children revolt. Comedy". Another comment on the Jimmy Kimmel link posted to the Food Inc Facebook page makes an analogy between gluten and smoking: 

"Gluten affects more than celiacs. Good for those people for not eating it, who cares why they are doing it. I don't smoke for health reasons but I can't name you the hundreds of chemicals in it, nor even 1! If you want to be healthy eat fruits and vegetables, lots of them!"

This person argues that people don't need to know the intricacies of the science behind a principle in order to follow it: we don't know all the chemicals in cigarettes, so why would that disqualify any convictions we might have about the problems with smoking? 

As a proxy for a whole range of different concerns that arise from wheat and grain-based food problems, 'gluten' is a simplification. We tend to reason according to models of identity and causality that are simpler than the real thing. The concept is what Bruno Latour might call 'a black box'. Sometimes, black boxes are necessary for strategic reasons- as heuristic (educational) devices, to create clean edges and a general shape of a scientific concept where there is a lot of internal debate. But sometimes they should be broken open and science should be debated. 

Latour argues in his book Pandora's Hope that processes of scientific deliberation should be broken open by the public to see the contestations within- and to even participate in that contestation where they have something to say. This is one of the ways we can encourage people to see the vitality of science and the importance of the interactive processes of testing hypotheses and generalisations from evidence. As his allusion to Pandora's Box suggests, there is danger in exposing scientific contestation to the public, but ultimately we are all better off for it, as such contestation can assist in encouraging the general public to gain critical thinking skills in learning about and participating in the scientific process.

The reality is that scientific concepts such as 'gluten' travel into popular use and popular currency when they are successful. Since science serves as a midwife to the birth of new ideas in society, new words are created through the interaction between science and the resources and limits of our current language. Scientists do their best to nominate gatekeepers to regulate the use of scientific concepts, and make sure there are not the same problems of fuzziness, of figurative and colloquial use, that marks the dynamism of most natural language. While I accept that some people illegitimately use scientific language, to make themselves seem smart- and need to sometimes be quizzed and taken down, and that spokespeople of the alternative health communities often speak with too much confidence and authority over science, and overstep their expertise in doing so, it is impossible to keep the vocabulary of science pure from influences of the outside world, and to stop ordinary people using scientific concepts such as 'Gluten'  for their own ends, their own experimentation.  Scientific language cannot be easily protected from general use. Science is a social realm. All such realms are creative, and generate new language, words that are then adapted and used to facilitate fluency and sense-making in other spheres of human life. 

The connection between cause and effect for the problems of complex biological communities such as human bodies is rarely simple to definitively trace, unless the problem is caused by a single pathogen (then subsequent detection of pathogens through microscopic examination is adequate): it is nearly always mediated by the interpretation of seemingly conflicting signals- and often- especially with autoimmune conditions, the problems vary from person to person. To interpret these signals according to scientific standards, we would need to become experts in human biology - particularly microbiology, and read peer-reviewed journals (which often require special access through institutions), practice properly designed dietary experiments on sufferers of similar conditions, as well as weigh up of the various possible contributions of different causal factors. In tracing the effects of diet, our experience of causality is not a simple deductive exercise. We often act on the basis of incomplete information, hunches, yes, trends, and tentative hypotheses. But even if our embodied information is not strictly systematised, it can get pretty close to that. Veteran marathon runner Robert De Castella- who has advocated for grain-free diets, and has run a grain-free bread chain Deeks in Canberra for many years, may not qualify as a scientist, but his embodied knowledge of sports nutrition and what his body needs for optimum performance would be among the most detailed of Australian athletes.  I would like to emphasise the particularity of embodied knowledge, and the difficulty in particular of understanding autoimmune conditions. 

I think that scientists should not be too protective about an exclusive access to testing evidence, to innovation, even to knowledge breakthroughs in the area of diet and health problems. Scientists can't control the growth of experimental alternative diet communities. There is a necessary feedback process where scientists can gently clarify and comment on popular use. That feedback process will only be successful if there is mutual respect with ordinary people who take risks in trying to grapple with scientific concepts in relation to their own embodied understandings.  Both information and experience- properly integrated- are able to inform understanding. This is best developed within an open-ended, experimental approach to the world that some call praxis, that can be cultivated in cultures and institutions. 

There are now millions of citizen-learners, guinea pigs or dabblers, who are undergoing some version of the gluten free, paleo, low FODMAP, Specific Carbohydrate, elimination or 'clean eating' diets, who are sharing their results with friends, yes at their yoga classes- it's true, in hair salons, or on the internet, perhaps not in the most rigorous or systematic ways, but they are making generalisations from real experience. There are also numerous people with chronic disease experimenting with probiotics, with faecal transplants, with other treatments for diseases such as Crohn's disease, sometimes furthering science in the process. They need to know the risks of these self-experiments and make decision in full understanding of those risks, with information about peer reviewed evidence-based diets and treatments. However, by ridiculing those who can't explain what gluten is scientifically, and demanding a form of logical justification in the form of correct scientific knowledge, those quizzing joggers on gluten and the joggers' critics such as Kimmel deny the distinctness and validity of the embodied knowledge of interpreting our bodies and the world. Such sceptics hear a technical scientific word such as 'gluten' or 'carbon', and put on their 'belligerent hat': they fire questions at the person using it, demanding that the person have a detailed and expert scientific understanding. I think such an attitude is unfair in the case of carbon, and it is unfair and misplaced in the case of gluten.  

Of course some 'fad dieters' treat their bodies poorly- as many diets practiced by body-loathing people can do, while others practicing the elimination diet occasionally risk malnutrition. But in the vast majority of cases, people attempt such diets out of concern for their wellbeing- a 'trial and error' attempt to improve the quality of their lives, and in many ways out of frustration that their ailments have not been adequately addressed by the medical profession. Many I have informally spoken to, who like me, altered their diets to gluten free, came from a place of pain and confusion about why their body is acting the way it is. Whether it is the pain of obesity, of foggy headedness, of stomach cramps, these are problems that are modern problems, and it is an important task to examine the factors that contribute to such immense losses in the health and wellbeing of so many people, and it's important to recognise the genuine efforts, sincerity and knowledge of the people involved.

Scientific standards are often not enough: doctors need to become better listeners and more patient at following up possible leads, and the general public needs to become more tolerant of popular dietary experimentation. In my opinion we need to bring together the subjective and the objective: the experience of people with health problems, as well as the systematic evidence generated through medical research. There are numerous stories of doctors who suddenly gain a new fervour or a new perspective on understanding disease once they are afflicted by this disease. I believe the medical profession has been unreasonably complacent as well as patronising in its relationship with sufferers of chronic autoimmune conditions who have taken it upon themselves to try dietary methods of dealing with their disease. I think there is a related scepticism in the public with regard to the concept 'gluten free' - and embodied knowledge is discounted in the name of science.

So the status of embodied knowledge seems to be at stake in these controversies. I have thought of a few related questions that I can't answer here, but I feel are live in this discussion:

1. How can doctors and broader society recognise the work of patients or health enthusiasts in learning about their bodies and experimenting with dietary interventions? 

2. How can doctors and science-minded people encourage such dieters to be better citizen-scientists, while listening to their voices including both systematically and non systematically compiled information?

3. What is the standing of embodied knowledge especially on health? What kind of recognition is possible and what validity can be ascribed to the informal knowledge of patients and health enthusiasts?

Thanks to all who have helped give pointers on my dietary journey, particularly Mika Lodsman, Charlie Wood, Maureen Fitzhenry, Simon Dougherty, Jane Matheson, Chris Wiseman.

1 comment:

Jane M said...

Excellent article Anne. I appreciate the response to what has angered me as well, and a response so well articulated.