More thoughts on unnecessary gluten avoidance

I was going to respond directly to Kristen’s post, but I don’t think WordPress lets you put hyperlinks in response comments.

It’s an interesting question, worth unpacking a little. If we agree that it’s important to respect phenomenological and subjective experience, does that mean that individuals should be free to adopt any medicalized identity as long as it doesn’t cause them harm (there are no clear negative health effects of avoiding gluten unnecessarily)? This is complicated by the way that illnesses do important work of identity formation, with illness subjectivities providing potential access to valuable forms of community and social capital- particularly in the age of internet fora and support groups (we’ve looked at this a little bit in class with Nguyen). It’s a fascinating new world of bottom-up creation of categories that are simultaneously illness and empowerment- Gillick’s analysis of jogging is a kind of precursor to this new proliferation of medicalized subcultures that are only taken up by the DSM once they reach a critical mass online. Are these conditions counterhegemonic, or just another example of technologies of the self ultimately serving the interests of governmentality? Lots of good possibilities for future research here.

Just to be provocative, if you’re OK with claims of gluten intolerance whether or not there’s a biomedical justification, how do you feel about pro-ana? Or about body integrity identity disorder, the conviction that one is healthy apart from the burden of a limb that does not feel like it belongs on your body?

The bioethicist Carl Elliott (always worth reading) wrote a great essay on BIID several years ago, and pointed out that the disorder really grew only once people were able to discuss it laterally on the internet, unmediated by the medical establishment. It’s as if the discourse actually created the symptoms in people’s bodies, in a kind of Sapir-Whorf effect.

There are lots of examples of this. This American Life just did a nice piece on the strange world of ASMR, a condition (labelled and given its properly medical-sounding acronym not by doctors, but by the online community) that makes videos like this intensely pleasant to watch. Do new illness communities develop because individuals first have symptoms, and can now discover similarly-wired people on the internet, or does the category to some degree create their somatic experience?

Why is there a gluten-free version of everything now?

Killer homemade wheat bread   (c) Kristen Pierce

Killer homemade wheat bread, literally?

When did we all develop problems with gluten? Slate considered this question a couple of months ago. The article links to a five year old article in USA Today with a quote from the executive director of the Gluten Intolerance Group of North America, “Marketers estimate that 15% to 25% of consumers want gluten-free foods — though doctors estimate just 1% have celiac disease, the best-defined and most severe form of gluten intolerance.”  The Well blog of the New York Times also took on the issue of gluten intolerance vs. a health delusion based on a fad.

The vast majority of people who have problems with gluten are self-diagnosed. I know several people who are gluten intolerant, and I’m not impolite enough to ask to see a doctor’s note when they choose something other than my baked goods. Are these self-diagnosed people making a trendy health choice based on medical rumor and the placebo effect, or are they displaying agency and individual awareness of their symptoms that the medical system doesn’t recognize?  From the Slate article:

… a randomized, blinded trial in Italy just showed that one-third of patients with gluten intolerance clearly felt better with gluten-free diets, which confirmed “a distinct clinical condition.” (Since most people can tell wheat-containing baked goods from their gluten-free substitutes, the investigators cleverly had all patients follow gluten-free diets and then take capsules containing either gluten or a placebo.)

Personally, if someone chooses and can afford to eat a gluten-free diet, and it makes him or her feel better, I don’t care whether the condition is “really real” or not. It gets a bit challenging trying to accommodate every dietary restriction, but viva la potluck. What do you think?

Rumor and murder of medical workers

In class, we’ve briefly mentioned polio still being endemic in only three countries (Pakistan, Afghanistan, and Nigeria).  In December and January, more than 10 vaccination workers were killed in Pakistan.  Micah pointed out that these workers are often trained individuals from the local community, making the loss far greater than just the polio vaccine,but the loss of a person who was knowledgeable, capable, and willing to be a medical worker.  Now, nine polio vaccination workers have been killed in Nigeria.  From the BBC article:

Some Nigerian Muslim leaders have previously opposed polio vaccinations, claiming they could cause infertility.

On Thursday, a controversial Islamic cleric spoke out against the polio vaccination campaign, telling people that new cases of polio were caused by contaminated medicine.

More information about polio can be found on the World Health Organization’s fact sheet. Great progress has been made — the disease was endemic in 125 countries as recently as 1988 — but it is a hard fight in the remaining three.

Lavender Town Syndrome

When I was in elementary school Pokemon came over to America. Everyone had a game boy pocket, and a copy of the game. It was everything a kid could want. Cute, tough, creepy, crazy, or cool looking monsters we owned. It was a lighthearted adventure with hours of grinding to keep young kids occupied. It wasn’t until recently, and by pure chance, that I started to listen to the Lavender Town background music. Lavender Town was a very small town in the game, and the only town with a graveyard in it. I noticed comments on a different video that brought up how the music to Lavender Town was changed when it came over seas. This isn’t a huge deal, and it happens all the time in the gaming world.

The more I looked into it, the more rumors kept popping up about the original games being quietly recalled in Japan. They in the original music for Lavender Town had certain high pitched frequencies that full developed ears couldn’t detect, but you children between 6-14 could. A few weeks after launch, there were many cases of kids having extreme headaches, and about 200 suicides. The suicides were either hanging, or a fall from a building. The only connections were they were all kids in the age range, they played Pokemon, and they used headphones when playing. This was conducted by “officials”, but they never really say what qualifies them to make sound judgement. Over time stories popped up in America. Story 1 and story 2 are for your reading pleasure. Whether you believe in the rumors or not, these are still some creepy stories. On that note, I won’t pretend I understand how the brain works. I won’t pretend to know how certain stimulus can effect our brain. I know that those high frequencies that only kids can hear are a pain. In high school there were these sound emitters that created a noise something like a cricket. None of the teachers could hear, but it would piss off a lot of kids in class. Here is an article presenting the other side. I am ambivalent here. Part of me would love to hear that it was true, but another part say, “In all likely hood it is not”.