There was a terrific piece published in the New Yorker recently about the whole gluten cultural phenomenon, taking in coeliac disease, non-coeliac gluten sensitivity (NCGS), breadmaking, FODMAPs, and the free from industry. It was health journalism at its best.
And of course, some hated it and chose to get angry, as has become the pattern for discussions online when it comes to gluten-related disorders.
One was a short piece in direct response – entitled “No such thing as gluten sensitivity? Really?!” – published on the blog of Living Without Magazine / Gluten Free and More – a US print magazine for the gluten-free community.
In it, the author describes her family’s extraordinary health improvement and symptom relief when introducing a gluten-free and dairy-free diet.
But then comes her attack on Michael Specter’s article. She accuses the author of ‘trying to establish that the GFD is just another fad’. Well, for some it is. And for some it isn’t. She calls his piece ‘offensive’ to coeliacs, which is baffling, because Specter is far from a denialist – he covers the rise in CD in his piece – and he’s merely trying to explore the extraordinary phenomenon of gluten in the 21st century, and explaining where we are in our understanding of NCGS, not – like her title implies – implying it doesn’t exist. She appears to object mostly to the comment questioning parents for putting their children on restricted diets without medical call for it – but in her case, some form of intervention clearly was called for, so why does she seem to take the piece so personally?
It is in relation to NCGS that I see the most personally expressed outrage online. There seems to be a widespread failure to understand that NCGS is an ongoing subject of research, and that journalism reporting the various possibilities or studies asking questions about it are not personal attacks on those who have been given a diagnosis of it or who have resolved long-standing severe health issues through a GFD.
What is being questioned is not their sanity (the Mail is excepted in this argument ..), their symptoms, their health improvement, but whether gluten is necessarily the causative agent for health issues. It’s not about whether NCGS exists, but whether it is appropriately named. As Specter says – it could be FODMAPs, for example. But merely pointing that out appears to put you immediately in the firing line these days. Do that, and you’re a denialist, who clearly doesn’t understand gluten, and has never experienced gut symptoms of any kind, and has no knowledge of medicine. Some accuse scientists, commentators and medics of slurs which have not been made. They accuse them of being influenced by big pharma. I’ve just been asked “Whose payroll are you on?” on the Facebook thread about the blog. Scientists get this all this and much worse all the time. Check out the outrage there, and check it out in this Gluten Dude FB post too.
Kirstin Boncher, who wrote the blog, closes with a hope that science will eventually find the answers. Scientists are trying to find the answers, and journalists such as Specter are trying to report on it. As he says in his piece “FODMAPs are not as trendy as gluten” – and perhaps that’s part of the wider problem. Why do some appear so desperate for it to be gluten – especially when scientists are discovering that it may not always be?
Why are we so desperate for it to be gluten? A great question! I would suggest because we just want a 'simple' answer, a bad guy to blame. People seem to prefer a simple good/evil story to a nuanced one.
Gluten is a simple(r) bad guy, whereas the much more complicated story of FODMAPs is challenging for the non-scientific brain. It doesn't make a good read in the Daily Fail!
When I was going through coeliac diagnosis I groped around for the one answer to all of my problems, landing on one theory, then another. Coeliac/gluten intolerance presents in such a wide variety of ways that it can perhaps seem like an attractive 'cure all' if you have a range of maladies. Even now I have a tendency to blame my 'simple' gluten answer for a variety of things- feeling a bit rough after a meal out? Must have been glutened! (Definitely not the alcohol…) Feeling rough after that bottle of red wine? Better check it was definitely gluten free! (Oh look- conspiracy theories from other people who think it isn't GF to back me up!)
With my baby I have the same tendency- there must be a simple answer to the eczema, reflux, grumbles- a food cure worked for me, therefore it must for her?
The trouble with this kind of self-diagnosis is I then suffer from confirmation bias- overlooking the times when the 'cure' didn't solve everything, remembering the times it did. That's why this kind of objective research is so important.
Bit of a ramble, I guess I'm just saying I think it's human nature to want to find a simple meaning or cause for everything- the gluten thing is just one expression of that. And if you feel like you've found the answer (and some peace) after years of problems, having someone challenge it is like having someone pull the carpet out from under you. Once, my coeliac diagnosis was called into question, and I felt scared, a bit embarrassed, and a little angry- I've built a life, identity and made friends based on it- what if I'm a fraud?!- it's not quite as simple as a change of bread…
A brilliant ramble, nonetheless. Agree re: confirmation bias, something that rarely gets brought up in such discussions, but which is important to consider. I really like your 'rug pulled from under your feet' point – this may well be the root of it. The threat to a new identity that you have first reconciled yourself to and later warmed to, perhaps? What I struggle with is the disproportionate reactions towards those who are merely examining the evidence, or trying to gather some more. The more you think about it, the more complex this subject gets ….
I thought the New Yorker article was brilliant and I said so on my FB page. I was not offended in the least by what he said (as some people claim I should be because I have celiac). It was well-researched and well-written. I am a vocal advocate for celiac, NCGS and gluten-related disorders and try to get people to consider all medical and scientific evidence before getting angry and upset. Here is what I have noticed about social media and blogs and FB pages: It is clear to me that people do not read articles in their entirety nor do they look at the evidence presented. It's a shame really because all too often, people complain to me that they went GF and they still feel lousy. I suggest maybe it's not just gluten, but FODMAPs and sometimes, they follow the diet and discover that's exactly what was going on.
I am fast coming to the conclusion that you are right in regard to people getting upset before reading the headlines. I also think some are just *desperate* to comment quickly about something and be the first to get a *strike* in when a controversial discussion is kicked off. Maybe blogs should offer a one-hour delay period before people can respond?! Or make them sign a declaration that they have, in fact, read the research they are about to comment on …. Thanks for comment, IH!
Sadly, I think social media is a "hit and run" deal. I have seen my share of trolls and 'drive-bys" on celiac.com (as a board moderator) and on various blogs. It's rare that someone sticks around to actually intelligently and rationally discuss a topic. And it's rare that someone supports wild accusations with actual science or citations.