I had seen various speculations about developing medications to treat gluten sensitivity, and been pretty dubious overall. My comment over there threatened to turn into a book (and has grown a lot since then, especially since I went off on a diagnostic-issues tangent!), so I thought I’d post the bulk of it here instead:
A very interesting post!
While it might be a convenient option at times, as a number of other commenters point out, I don’t think I would want a daily pharmaceutical treatment for my gluten sensitivity. I would like to have the option of taking something in case I’ve accidentally glutened myself up, more in the realm of antihistamine or even antidote than any kind of perceived “cure”.
This comment turned pretty long, so I have made it into a post instead of clunking things up here. 🙂
While it’s inconvenient, and makes my life difficult sometimes, I don’t think it needs to be “cured” (if that were even possible) any more than lactose intolerance does. I actually have very similar views on both, which have been influenced to some extent by being a member of a minority ethnic group; a lot of my ancestors didn’t clap eyes on either wheat or dairy until about 400 years ago. Assuming that everyone should eat exactly the same things, everywhere–and it’s on them if they can’t–is kinda arrogant. The health problems caused by continuing to eat things your body reacts badly to are definitely a legitimate medical concern, but I’m not sure that it’s reasonable to consider these genetic differences medical problems in need of drug treatment, per se.
I, too, am far happier and healthier since I’ve had good reason to pay more attention to what I’m eating, and cooking a lot more from scratch with good-quality ingredients. Paying attention to what actually works for my body has been an excellent change. While the availability of a pharmaceutical treatment wouldn’t change my eating habits, I’m not sure that using it as a regular substitute for examining our lifestyles and learning more about nutrition and what works for each of us individually would be a good thing for many people–even if the pills did work as promised.
Nicole Wang raised an excellent point:
I wince at the thought of well intentioned people asking me why we “won’t just take the pill”
Exactly. This is liable to turn into an extra layer of perceived social responsibility, so we won’t inconvenience other people with our wacky eating habits. I’m concerned about the pressure on parents, in particular, to medicate their kids “if they care about them”. It would also take away pressure for any kind of systemic change–even as simple as providing more nutritious, less allergenic school lunch options, instead of the same old refined wheat-based meals washed down with milk.
I mention kids in particular, because I can easily see this affecting people who are newly diagnosed a lot more. Recognition is better now in the US as it is; I was almost 30 and had moved to the UK (with more awareness then) before I even found out that gluten might have been causing problems all my life. If there is medication available–and it’s seen as even more of a real, treatable health problem–you can bet that more people are going to get tested earlier.
Which also leads me to related concerns about even more medical dismissal of non-celiac immune reactions to gluten, and minorities’ reactions further getting missed. Celiac is already seen as a problem primarily found in obviously European-descended populations, when there haven’t even been any kind of comprehensive prevalence studies among certain other groups (who might be more prone to non-celiac manifestations, anyway, judging by the scarce data available).
In the ’80s, the “fat, fair, and 40” profile of gallbladder problems was still current (I don’t know about now). My mom didn’t fit any part of that profile when she started having trouble, so her repeated attacks from gallstones were dismissed for better than 10 years until they blocked the bile duct and required an ER trip and emergency surgery. In fact, they now know that “Native Americans have the highest prevalence of gallstones in the United States. Among the Pima Indians of Arizona, 70% of women have gallstones by age 30” and that “Women between 20 and 60 years of age are twice as likely to develop gallstones as men.” Unfortunately, it’s easier to see what you’re looking for.
For example, people keep asking things like “Can Native Americans get celiac?” (better than average partial answer: “Most research being done has been Euro-Centric but recent studies indicate that Celiac Disease is present in every race and culture.”), or “Does anyone else in the Native community have it?”. Anecdotally, it’s a big problem (“Many, many Native Americans are lactose-intolerant and have gluten intolerance or celiac disease”)–which kinda makes sense among a population only recently exposed to grains containing gluten–but nobody really knows, because there still haven’t been any studies other than within a few individual nations, AFAICT! That still totally neglects non-celiac autoimmune reactions to gluten which don’t destroy your intestinal villi, but can still make you pretty darned sick. I haven’t seen a lot of prevalence studies on that, much less looking at different populations around the world and how gluten sensitivity might show up differently among them.
Unfortunately, some research really does seem to be conducted along the lines suggested in the second comment on a Washington Post blurb I ran across, Celiac Disease Increases Sharply :
It’s my impression that celiac disease is more common in white people of northern european origin.
Native Americans are the other ethnic group in that area, so you’d hope they were eliminated from this study.
It seems likely that blood samples would have been taken at the Air Force Base as new recruits were processed. So were they to be non-natives then the samples could be compariable.
In other words, “there is no evidence available, so let’s exclude people who might complicate our results…and incidentally give us some useful evidence.” This is also a problem with other medical research, BTW. As Frank Brown, M.D. put it, ‘Native-American subjects have historically been left out of medical research, and inclusion is necessary to “show the disproportionate rates of illness among Native Americans and the disparities in funding for diagnosis, prevention, and treatment of disease in this population.”‘ Similar applies to other minority groups, when they’re not getting lumped into largely meaningless categories like “Asians and Pacific Islanders”. (And we multiracial types really gum up the works.)
That tangent aside, I’ll get back to the idea of drug treatment after someone manages to get the diagnosis. 😉
If there is at least one kind of pill available, I’m concerned that this option will get pushed to the exclusion of managing gluten sensitivity through lifestyle changes, in a very similar way to how most doctors seem to think of managing Type 2 diabetes without meds: it’s an unreasonable hassle, and very few people are likely to be willing or able to do it. I wonder how much dietary change would still even be mentioned as a feasible option, once drugs are available. Based on some of the “but what could you possibly eat?!” responses we get already, that is unfortunately far from a stretch.
In the US at least, I’d also hate to see how this could affect people who can afford sacks of cornmeal, rice, and potatoes a lot more easily than newly developed, expensive medications–once they’re even diagnosed, with poorer access to medical care in general. Here in the UK, gluten-free food is considered a medical necessity to the point that you can get it on prescription under the NHS, on the basis that “[f]ollowing a gluten-free diet is easier when you can get adequate supplies of staple foods such as gluten-free bread, pasta and flour.” (You don’t say!) Though I’m sure my previous GP partly avoided sending me for testing because not only does the testing itself cost, the subsidized prescription food is only available to people with official celiac diagnoses. But, in theory, it’s a saner system, even if the “giant HMO with a monopoly” implementations sometimes leave a lot to be desired.
See also Drug Companies Expect Big Profits from Celiac Disease Patients. This is a very real concern, and I have trouble believing that even though most of the prospective medications being discussed are not supposed to be for regular use instead of a gluten-free diet, there won’t be a future push toward using drugs as a first-line treatment. There’s just too much money to be made there.
I am also very wary of what any medication(s) developed will actually do. Will it mask symptoms? Will it prevent the autoimmune damage to people’s bodies, as other commenters have pointed out? Will people continue to have silent nutrient absorption problems, maybe even exascerbated by the meds? How will the end user know what it’s really doing, as opposed to what models show that it should do? Are unforeseen side effects likely to be worse than the original problem?
Having come down with iatrogenic Type 2 diabetes from the metabolic effects of other medication in my early 20s–then B12 and thiamine deficiencies from malabsorption caused by a common diabetes medication!–I have good reason to be concerned about this kind of thing. Avoiding gluten in the first place is unlikely to cause even the “minor” common side effects, like headaches, drowsiness, and nausea. 😐
You introduce a medication into the human body, you have no idea what unpleasant effects it might have down the road; this is not a problem with avoiding eating gluten in the first place in a reasonably informed manner. That’s a particularly important thing to bear in mind when dealing with children who aren’t yet able to make informed decisions for themselves, IMO. First do no harm, and all that!