Day 4: A Gluten-Free Life. Really, It’s Just Been Six Months
I have always been someone who prided myself on being willing and able to eat whatever was put in front of me. Once, the guy who lived in the apartment downstairs from me in West Philly invited me to an after-hours event at Vientiane Café, a Thai restaurant on Baltimore Avenue. He was hosting a private dinner where they were going to serve even more authentic Thai food. This included water bug pâté, which I ate. So the first time I had to positively answer the question whether I had any dietary restrictions, I was embarrassed. Even just last weekend, when a friend asked, “You guys eat everything, right?” I took it as a point of pride that we were thought to be “those kind of people,” the people who weren’t fussy. Then I had to say, well, no, I’m gluten-free.
Then you get those looks. I know those looks, because I used to be the one giving those looks. They are the looks that say, oh be serious. Only about 1% of the population has celiac. And celiac is the only legit reason to go off gluten. Because you know studies show gluten doesn’t have any effect on healthy people. (This last point is not entirely true–read this New Yorker article, but I used to maintain it, just as much as the next person.) And I would be that person, like people I encountered on Facebook and IRL, who would say that there is no reason other than celiac to go off gluten. Not just say things, but say things, you know, the way people can on social media. I confess, I considered myself superior to people who supposed that gluten was the source of the troubles when they had little evidence that this was the case.
Then I was diagnosed with hypothyroidism and told that I would need to be on a hormone for the rest of my life, and I was like, I’ll pass. So I did some research, and I learned that–what do you know?–gluten can be related to thyroid health issues. I swear I saw on the Mayo Clinic website that gluten is one food that should be avoided, but now they have taken down the discussion of how diet can affect thyroid health. Oh well. In any case, what I learned was that gluten can imitate the thyroid protein, so the thyroid sees gluten and thinks there is sufficient hormone and doesn’t make more. This leads to fatigue and brain fog. I had been living at a low-level of fatigue and brain fog for so long I didn’t realize that that was not just the general way life was supposed to be–I was napping almost every day for five years or so, and often forgetting words or using the wrong ones.
So I decided I would try to go off gluten. I was not very good at first. I got the diagnosis right before I left for a month in Europe last summer. It was hard to be gluten-free on the road, and in a foreign country where I often didn’t know how to even ask if something was gluten free. So I would describe my diet as gluten-light. When I came back, I was more aggressive about cooking without gluten, so I was getting gluten-lighter and eventually gluten-free. I found myself feeling more alert, avoiding that 2:30 in the afternoon pressure over my eyelids, and finding my words better. Someone told me when I mentioned this that the placebo effect is very real. To be fair, I probably would have said that six months before.
Then I went to the doctor and had my thyroid numbers checked again. Thyroid numbers are backwards — on a scale from .4 to 4.0, under .4 is hyperthyroid or overactive thyroid, and over 4.0 is hypothyroid or underactive thyroid. The reason is that the test actually looks at the pituitary gland. The pituitary gland is the governing gland that makes sure the rest of the endocrine system is working as it should, so when the thyroid goes haywire, the pituitary makes up for it by producing more hormones. So the more pituitary hormone you have, the less your thyroid is working. When I first had any inkling that there might be a problem, last winter, my thyroid was around 3.7. Not yet definitively hypothyroid, but on the edge. That’s when I began thinking about things I might do with my diet (like avoid high intake of cruciferous vegetables — really! There is a study for that). When I went back in June, the numbers were higher 4.2, so that’s when they recommended the hormone therapy. That’s when I made the slow transition off of gluten. When I returned in October, my numbers had returned to the middle! 2.083. I told my doctor that the only thing I had changed was going off gluten, and she said, well, I don’t know about that, but your numbers are much better.
So yes, I don’t have a study. It was just me. But the numbers changed, and I felt better. I learned two things about this. People will not believe that something you are doing in your diet makes you feel better, but they will be more likely to believe it if you have numbers to support it. People’s testimony (often women’s): not believable. Data: Truth! Yes, ok, we all know that there is a whole industry out there bent on getting you to Try This One Trick to cure all that ails you and that most of it is bullshit. But this is no reason to disbelieve the testimony of patients. There are many reasons why there might not be studies to show a thing. For one, no pharmaceutical company stands to gain from showing that going off gluten can support thyroid health, even cure thyroid disease, so no pharmaceutical company would run such a study. Lack of studies is very different than studies that show that there is no effect. Though lack of studies that show that there is a correlation between a thing and a disease could be taken as support for that thing when there are studies that show the positive effects of the thing, as when scientists repeatedly disproved the study that argued for a link between vaccinations and autism, see this write-up in the Scientific American. Even studies that contest whether gluten is indeed a problem, don’t argue either that gluten is good or that there is no problem, but that the problem might have a different cause.
The other thing I learned is stop having opinions about other people’s diet choices. There might be reasons that you have no information about. And people should not have to prove to you that their diet decisions are legit and not based on junk science just so that you will allow them their choices. I was guilty of it. Now I know better. Now like all recent converts, let me tell you why I’m more right now.
Was diagnosed with Celiac disease in spring 2015, and have been gluten free since. Very grateful that I have a cook (my wife) who has rolled with the culinary challenges of feeding me and our three gluten-eating kids. Find the biggest challenge is eating while traveling (especially at conferences). Seems like almost every hotel and pre-conference breakfast is gluten based (bagels, muffins, etc.). So now need to travel with my gluten free packets of oatmeal (and a big container of unsalted peanuts).
I agree about eating at conferences. Part of my problem has been that I don’t want to be a burden, which is why I don’t ask. But really, why should gluten have pride of place? Oatmeal packets and fruit would not be difficult to provide. I’m going to be at the APA on Wednesday. I’ll see if I can work myself up to say something.
I almost never go to a conference where there is anything worth eating for breakfast and I am not gluten free.
I’m glad you feel better, and that actually is the only important metric here.
But. When I was a kid, there was stuff I didn’t want to eat, and my brother more so. My mom, being the sole provider of prepared meals in those days and even then somewhat respectful of the worth of her own time and effort, made some accommodation, but mostly we ate what was put in front of us or we left the table a little hungry. She was explicitly not interested in cooking multiple meals for multiple idiosyncratic preferences, and who can blame her?
When I first started teaching, I had a super bright student who was in recovery from four years of severe agoraphobia. Our Human Development program was all about self-reflection, and in the course of that she gravitated toward a research study of eating disorders in relation to her own family’s dynamics. Her brother had special dietary needs, as it turned out, that her mother turned into a whole profoundly anxietizing heroic drama; but Jenna decided that every bit of it, including but not starting with the ‘original’ dietary trouble had been about struggles for control, having to do in part with the circumstances of the father’s absence, the mom’s rather confused and overbearing understanding of femininity, and the brother’s similarly confused and ineffectual understanding of masculinity. (Jenna went on to do a great dissertation on identity formation in recovery programs and the ‘recovery from recovery’.)
Now it’s starting to look like anxiety disorders, eating disorders, and generally that spectrum of existential disphorias, are associated with the difficulties of self- and other-perception loosely collected in the ‘autism spectrum’. Basically, folks who have some difficulty sorting out how they feel, how other people feel, how they feel about how other people feel, and so on. We’re talking about a whole lot of folks now, and a whole lot of ways for syndromes to get dynamically idiosyncratized.
And then I’m a historian. Personal testimony is among our most valuable sources, and sometimes all we have to go on. We cherish it and leap for joy to find it. But we never dream of taking it at face value – that would be a kind of professional malpractice. Can you imagine a historian who mistook Napoleon’s or Hitler’s or Nixon’s memoirs for what actually happened? A historian of the Salem witch trials who approached them as if the question was why Satan turned those women to witchcraft? People are routinely mistaken about themselves and their environments, for many good human reasons. Historians too, which is why history keeps changing, like minds.
Part of the problem with human studies is that we are not all the same physiologically, and until you find ways of sorting people into physiological categories it is easy to miss things that apply to only one category of specimen. When it is something like “all white pea plants have curly leaves” where both factors are easily measured, it is easy. When it is something with many more possible factors, it is harder to sort out–is mid afternoon sleepiness can have lots of possible hormonal connections. We are getting closer to personalized medicine, and until then, it takes the kind of self experimentation you did. I am glad it worked…and that your doctor even had you come back to retest. I asked for thyroid testing a couple of years ago, and it came back as 3.7, and the doctor said, you are normal, end of story. I suspect I have gluten issues too, so thanks for sharing your story, I will try the experiment…when I get back from this gluten heavy workshop 🙂
Thanks for this. I wonder what studies in medicine would look like if people weren’t all treated the same. That would seem to require a complete rehauling of the FDAs testing process. Not that that wouldn’t be a good thing! Also, I suspect that part of the reason they said you are normal, end of story, is they don’t think you are hypothyroid enough for the hormone therapy, but you could still, as I did, have low level symptoms.
Just read your two last posts. Very good. Thanks for sending them.
I thought I’d let you know that my uncle — another person who never, ever, not in a million years would have had a food allergy — also gave up gluten. He did it “by accent” at first. He had to stay off some other kinds of foods for a short time, but he found himself feeling much better, and then he realized that with his new diet, he was basically not consuming gluten. So then he went official gluten free, and he swears by it. I think it still bugs him that he can’t find enough studies or valid scientific evidence to back him up. (“enough” and “valid” being in his own judgment.) In any case, this story obviously has a lot more impact if you know my uncle, and know just how much he’s NOT the kind of person you’d expect to join the no-gluten bandwagon.
Additionally, Christie said just this morning that maybe we should try going gluten free for a while, just to see if there’s anything to it. We’re still thinking about it … and trying to get through the huge batch of bread I baked yesterday!
There’s a minor typo in the Greek article. I think you mean “sum”, not “some”. But I’m not sure. At least double check it.
Otherwise, I liked that too. Is the exhibit still worth going to? (I mean, despite the oversimplification?)
*_______________________________________Ethan J. Hollander*
*Associate Professor of Political ScienceWabash Collegehttp://persweb.wabash.edu/facstaff/hollande *
Thanks for pointing out the typo. I think the Greek exhibit is worthwhile in a ‘greatest hits’ kind of way.
Great article! It persuades me to try a gluten free diet to see if it helps my auto immune disease since age 2 – rheumatoid arthritis. Thanks for the insight!