Tag Archives: adherence to gluten-free diet

What do you say to celiac disease ignorance?

Do you speak up when someone says something incorrect about gluten sensitivity or celiac disease? (This, by the way, could almost be a question on my celiac disease personality quiz. If you haven’t yet, try it and let me know your result for a chance to win free tickets to or a swag bag from the New York/New Jersey GFAF Expo.)

I generally do. I don’t like the idea of untruths being spread, and I feel party to it if I hold my tongue, especially when I have a personal connection to the subject.

Sometimes, I’m the one who turns out to be wrong. Case in point: last night, I learned that my parents mash their potatoes with an electric mixer, not by hand, as I had been vehemently insisting to my sister. But even then, I don’t usually regret speaking my mind. A little friendly debate is fun.

mashing potatoes with electric mixer

I still think it’s better to hand-mash. Sorry, Mom and Dad.
Photo © Robyn Anderson | Flickr

However, when the other person also feels personally connected to the subject, and isn’t my sister, and we aren’t discussing culinary technique, things can get sticky. A Google search isn’t always sufficient evidence to win such debates, which may escalate into real confrontations.

So, under such circumstances, I sometimes just back off. For example:

Scenario #1: The Fellow Patient

A few months ago, in the waiting room at my doctor’s office, I got to talking with an older gentleman who had been diagnosed for some time.

When I asked how he felt, he shook his head. “Still sick,” he said. “I think I have a parasite.”

I was sympathetic. “I’m not feeling better yet, either.”

“And you’re sticking to the diet 100 percent?” he asked.

“Of course,” I replied.

“You don’t eat out?”

“No,” I replied.

100 percent?” he repeated.

“Yes,” I assured him. “100 percent.”

“Wow,” he said. “I don’t. It’s too hard.”

Seriously?

I wanted to say, “Huh. Maybe you don’t feel sick because you have a parasite. Maybe you just aren’t doing the one thing that is known to cure the disease you have.”

But I hardly knew the guy, and he was many years my elder. Plus, he was about to go in to see the doctor and, hopefully, be told the same thing by her (with better bedside manner).

I might have looked surprised, but otherwise, I kept my thoughts to myself. When I stood, I told him to get well soon.

*

Scenario #2: The Family Member of a Patient

At a barbecue to which I had dutifully brought my own gluten-free three-bean salad, I started talking to some of the other attendees about celiac disease.

One of them said, “My aunt had that…”

I nodded.

“…but she grew out of it,” my interlocutor concluded.

My nod turned sideways. “That’s not actually possible,” I said, slowly.

“Yes, it is. She was gluten-free when she was a baby but now she doesn’t have it anymore.”

“I’m pretty sure you can’t grow out of it…” (By now, I’d already lost: in order to maintain appropriate backyard conversational levity, I was qualifying my response, playing nice, pretending I didn’t know beyond a shadow of a doubt that you can’t “grow out of it.”)

“Yes, you can.” She was as vehement as though we were discussing her own GI tract. “She did.”

I argued a bit more, then shrugged. “Okay,” I acquiesced. “Maybe you’re right.”

I let the conversation turn to other things. I ate my salad.

I moved on.

But did I really? Clearly I’m still thinking about it—about both of the conversations, wondering if I should have spoken up. Maybe I could have dammed one small stream of misinformation, if only I had thought of the right thing to say.

Instead, I reverted to a certain mode of sociability, one I’m not even particularly fond of, whose principles are:

  1. one doesn’t act like a know-it-all
  2. one doesn’t harangue one’s conversation partners
  3. one doesn’t call another’s bluff.

Was this cowardice on my part? Laziness? Did standing aside make me an accessory to the “crime” of spreading ignorance?

Or was it appropriate to just let it go? Am I, after all, responsible for educating people? Even people who aren’t prepared to accept my advice? Don’t I reflect better on myself and the general celiac population by not beating people over the head with my supposed superior knowledge? Don’t I seem less uptight, less nitpicky, less of all those undesirable qualities with which we are too often associated?

I don’t know. I’ve thought about it and thought about it, and, for once, I just don’t know.

What would you have said in these situations? Have you had similar experiences? How did you respond? 

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