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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12 thoughts on “What do you say to celiac disease ignorance?

  1. Mary Kate says:

    I think you reacted fine in both of them. Yes, there is the general socialization of women to “be nice.” But there’s also generally socially-appropriate behavior — the older man was going to see his doctor. So you left that one for a higher authority. And the other incident occurred at a party, where getting into an argument (likely the only course with such a nuanced view of, you know, things) would have been inappropriate. There are likely ways you could have shut down that conversation and changed the subject — thinking through your next response to that kind of situation is good, but mainly so that you feel you did as well as you could when it comes up again.

  2. Casey says:

    It’s definitely awkward when trying to explain it! People have so many misconceptions, ignorant ideas, and other issues with eating gluten free and celiac disease.

  3. This is definitely one of the more frustrating aspects of the disease. I’m usually all for standing by my convictions when I know they’re correct (and sometimes when I don’t know they are), but the not-wanting-to-be-a-know-it-all is compounded by not wanting to draw attention to your disease, seem like a pitiful whiner, etc etc.

    Well said, in any case.

    • These issues also illustrate one of the many ways in which the recent wave of celiac “awareness” is a blessing and a curse; it’s easier to explain the disease because people already have some knowledge about it, but it can be harder to raise actual awareness when people already have some misconceptions that make them /think/ they’re informed.

  4. I think you were right. At some point you just have to give in and move forward. You can’t make everyone a believer no matter how hard you try.

  5. I think you responded well too. With my Lupus I have never tried to correct or even inform people who don’t want to be informed. But I think with celiac it’s different especially now that gluten free is the latest health ‘fad’.

    I was at a chain restaurant shortly after my diagnosis and a group of 20 something year old girls were celebrating a birthday. One of them went through a whole long explanation with the server about how she was gluten free and how she needed her order to be ‘safe’. At the end of the meal she ate cake. I heard her tell the other girls that she’d been good all week so she could have cake.

    That’s all fine and I don’t have a problem with fad eaters BUT for us it’s not a fad and I do feel a responsibility to say something especially to servers. Unless they have a friend or family member who suffers from the disease…the people they wait are their only exposure to celiac. If people go on and on about needing their order a certain way and then follow that up by eating cake the waiter isn’t going to take the next person seriously. If any of that makes sense. 🙂

    • Molly says:

      That is a bummer. She might be doing it as a fad, or doing it because she feels better off certain grains but doesn’t have the longterm consequences associated with “cheating” that people with celiac disease do. But in either case it seems absurd to worry so much about the food’s “safety” and then order cake. Will power does erode over the course of a day, so maybe she went into the meal intending to be “strong” but by the end of watching everyone else eat food she really wanted, she didn’t have the stamina. Who knows. I’m sure people in that situation aren’t thinking about how their behavior reflects on people with celiac disease.

  6. v8mile says:

    I’ve had people not believe that it means all wheat, period. Or they’ll pester you with questions about how you know for sure.

    The best thing to do is to approach it with a sense of humor. Joke that it’s not easy to never have wheat again. Remind people it’s a matter of health, similar to an allergy, and that is isn’t something you would do without a good cause, reason, and a doctor’s ok.

  7. […] you still hear stupid things said about celiac disease. And, if you’re anything like me, it makes your blood boil. In the interest of our collective blood pressure, though, I suggest that […]

  8. […] In fact, I would love to carry one of you around in my back pocket to pull out whenever I need to calmly explain something about celiac disease or gluten-free living to someone who’s just not getting it. You’d acknowledge both sides of the discussion, calmly bring us to an understanding, and smooth out any tensions or hurt feelings as you went. In short, you’d do a much better job than I ever do. […]

  9. rachelmeeks says:

    I hate situations like this and can totally sympathize. Like just yesterday, my mother-in-law (that’s my excuse for not speaking up, btw. She’s my mother-in-law. I would loose. Maybe not the argument itself, but somewhere, somehow, I would loose.) was talking about Alzheimer’s, her dad, and her new husband’s dad. And she was saying “I’ll tell you what I told your bothers. Stay away from chemicals! My dad was a jeweler, and hugh’s dad is a painter. Both of them spent all day with chemicals, and both got Alzheimer’s.” I wanted to EXPLODE at her with my newfound knowledge of chemical sensitivity and point out that she’s probably exposed to just as many if not more chemicals in her daily beauty routine and constant hair coloring. And she lets her sons do drugs because she doesn’t see them as that different from OTC meds, which DO NOT EVEN GET ME STARTED but okay. (I had to stamp this line of thought out of my hubby, don’t worry. He is now sane). But street drugs ARE NOTHING BUT CHEMICALS OMG AHHHHHHH.

    But am I chemically sensitive? No. Do I color my hair? Only a little but yes. Is it a good idea to bring up your MIL’s grey hair and drug addicted sons? No.

    Plus I get just as mad at fabreeze commercials, and yelling at them has gotten me nowhere. *headdesk* /endrant

  10. […] you to a higher purpose. You want to feed the gluten-free hungry (all of them), or rid the world of celiac ignorance (all of it), or find a cure for celiac—singlehandedly, of course. Magnetic, passionate, and just […]

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