A couple of weeks ago I discovered that the source of my yearlong discomfort is celiac disease. Which apparently makes other people uncomfortable.
In fact, dealing with other people’s reactions to my new diagnosis has been harder than actually going gluten-free. Which is saying a lot, because finding gluten-free foods has been anything but easy. Escaping breads, pastries, pasta, cereals, soups, dyes and additives, plus a whole slew of stuff you wouldn’t think contains gluten, proves challenging. And I have already said goodbye to my two favorite indulgences, whiskey and Doritos.
Yet in addition to navigating my newly narrowed food world, I’ve spent the last few weeks trying to navigate a mix of responses from others. Many people, upon hearing the celiac news, have been quick to suggest that:
- it might be curable
- it might be psychological
- it might be misdiagnosed (I had a positive blood test, but not the biopsy)
- I can probably still eat ______, because it doesn’t really have gluten in it
All of these may be true. And I hope they are. Yet I’m not really sure what to do with this advice.
Finding out that celiac disease could be the source of my mysterious weight loss, abdominal agony and inability to enjoy Manhattans had brought some relief. After numerous tests over the past year which turned up nothing, at least if it’s celiac I know where to go from here.
But in clutching (oddly) hopefully to my new diagnosis, I’ve also felt stigmatized, battled and exhausted. I believe the reactions in my social circle are well-intentioned—people want me to be able to enjoy what they’re enjoying. But at the same time I wonder, do they think that I don’t know my own body? That I’m imagining the symptoms?
There’s also a flurry of backlash in the media. Many health journalists and healthcare providers are irritated that the public is glomming onto gluten-free as a misguided way to eat healthy or lose weight. Only 1% of the population has celiac, they insist, yet around 30% of Americans are trying to eliminate gluten from their diets.
Again, all this may be true.
Could it also be true that the gluten-free diet is gaining in “popularity” because there’s an increased awareness of wheat sensitivity, leading to improved diagnosis of it?
I assure you, I’m not eager to pay double for gluten-free options, starve at continental breakfast buffets or “think” my way into extreme discomfort every day.
The Source of Skepticism
I wonder if the reactance to a gluten-free diet might be, in some cases, denial. Maybe people are worried that acknowledging the prevalence of gluten sensitivity might mean they could have it, too.
I have received some supportive responses, including a box of gluten-free “Oreos” that was gifted to me, as well as dinner invitations where all gluten foods were scraped from the menu. For this I’m very grateful.
But other reactions to my diagnosis and transition have been (unintentionally) unhelpful. I really do think people mean well. I bring it up only out of a desire to understand negative and incredulous reactions. In doing so, we might all be in a better position to ask whether we should be gluten-free—stigma and skepticism aside.
What does this mean with regard to eliminating gluten, in particular? People ask: could it be healthy? Well, if it means you’re cutting out junk food and correcting a macronutrient imbalance (many Americans get too many of their calories from processed carbs), then maybe. But you also risk malnutrition, and of course gluten-free foods also come in packaged and processed form, full of sugar, preservatives and artificial additives.
There are good reasons to be cautious about people adopting a gluten-free diet unnecessarily. (Here’s a summary of them from the Journal of the Academy of Nutrition and Dietetics.)
A Disease for Middle Class?
Celiac has also been called a disease for rich white people. I assume this refers to “yuppies” looking for an excuse to spend more money at Whole Foods. But it does seem that where gluten-free is concerned, the low-income population is screwed.
Packaged and prepared foods, which are frequently purchased by the time-poor and cash-strapped, often contain gluten as a “thickening agent.” It’s almost impossible to find completely gluten-free food that isn’t specifically manufactured to be gluten-free. And that stuff is expensive.
Fresh high-quality produce, dairy and meats are safe for a gluten-free diet, but they aren’t always accessible and are rarely cheap. Visiting Chicago last week for a conference, I would have had to take two busses from my lodging just to reach a grocery store. So instead I spent $10 on a breakfast of eggs and a banana every day. (Bagels, muffins and toast would have been free.)
Anyone trying to follow a restricted diet must be familiar with these frustrations. And people often say that the social aspect is the hardest part. Even before celiac was on my radar, I could tell that certain foods were suspect—beer and birthday cake, for example—yet people were still sliding them to me at parties after one and sometimes two refusals.
Perhaps it’s a common illness experience—to feel like the world is raising an eyebrow at you, wondering why you choose to be sick or hoping to prove that you aren’t. Or hoping, at the very least, to make you eat cake.
What does food symbolize in our society that would cause such discomfort with diet restrictions? Why does it make us squirm when someone is not eating what we’re eating? And why are celiac disease and gluten sensitivity such a bother, in particular?
I am holding out hope that my diagnosis was a false positive, or at the very least, that 100% of gluten is indeed removed from whiskey during the distilling process. But if testing the celiac boundaries means risk of pain, malnutrition, cancer and infertility, then it doesn’t seem worth it.
So this holiday, please enjoy a giant slice of pie and a glass of bourbon for me.
P.S. My physician insists that the blood test is 95% accurate. Alas. (On the bright side, I found out that Cool Ranch Doritos are gluten-free)