Tag Archives: awareness

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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Help me write a letter to my doctor

Last week (erm, two posts ago…gosh, I’ve been lazy) I asked why doctors can’t just talk to each other. I wondered if all my docs could have put their heads together and figured me out faster. The consensus was “maybe, maybe not.”

Photo © Ben Weston | Flickr

Even though celiac disease is associated with a huge range of symptoms affecting virtually every system and function of the body, with implications going well beyond the gastrointestinal, it’s GI doctors who are overwhelmingly responsible for diagnosing it. Other doctors are less likely to be trained in recognizing it, and apparently also less likely to care. (Back in February, Jess of The Patient Celiac posted a selection of anonymous comments on an online doctors forum that included this gem: “Ugh. Is there any disease more boring and worthy of turfing to the GI guys than Celiac Sprue?”)

So although in an ideal world, any of my doctors could have diagnosed me separately or in collaboration (or a supercomputer could have), in the real world it was pretty much down to the one who specialized in intestines to diagnose me.

But she didn’t.

I saw a gastrointestinal doctor for the first time back in December/January of 2011 after half a year of symptoms (my insurance made it hard to see a doctor earlier, since I was in college out of state). In that half a year, I’d had an emergency room visit, I’d tried a strict low-FODMAP diet with no results (besides an initial placebo high that wore off after a week), and I’d worried a LOT.

The GI doc did a colonoscopy but—inexplicably—not an endoscopy or at the very least a blood test for celiac disease. She wasn’t interested in talking about food (turfing it to the dietitian guys, I suppose, though she didn’t set me up with one), and she sent me on my way with OTC meds and all but a pat on the head.

Since I first got my positive bloodwork results, even before I had a fully confirmed diagnosis of celiac disease, I’ve been toying with the idea of calling or writing to this doctor. Now that it’s nearly May—celiac awareness month, as you may be (heh) aware—it seems like a good time to follow through.

What I want to accomplish here is:

1) Tell her my story
2) Understand why she didn’t test me for celiac disease (or, if she did without my being aware, why she never contacted me with the results)
3) Let her know, if she doesn’t, that my particular symptoms are commonly associated with celiac disease
4) Encourage her to test for celiac disease before diagnosing IBS in the future.

What I don’t want to do is:

1) Come off as whiny
2) Come off as condescending
3) Offend her sense of her own expertise
4) Be immediately dismissed
5) Threaten a lawsuit.

Unfortunately, I’m a whiny, condescending, offensive, easily dismissed person prone to making accidental threats. So I need your help!

Have you ever written this kind of letter? Whether or not you have, do you have any tips for me? Any specific things I should say or not say?

Is it better to do this in writing or over the phone (in your opinion or experience)?

Do you feel this kind of patient-to-doctor education is possible and worthwhile? What are other ways to go about it?

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The bathroom IS an important part of the story.

This was meant to be a lighthearted “second-favorite book character with celiac disease” post, in the vein of my Moaning Myrtle review. I was going to point to a particular scene in a Beverly Cleary book and say, “See, Ramona knows.” But when I located and reread the Ramona the Pest scene, I remembered some details that got me all righteously worked up about education and sent this post off in a totally different direction. I hope you’ll pardon my soapboxing. If you came for lighthearted, please check out my archives, where you will find plenty of absurd musing on fairy tales and brain fog. No doubt I will be back tomorrow babbling about citrus (no, but seriously).

If you’re still there, let me paint the scene for you: Kindergarten teacher Miss Binney corrals her rowdy class into something approaching order and reads aloud the story Mike Mulligan and His Steam Shovel, an inspiring tale about sticking to your guns and living up to your promises. In the face of great doubt, Mike proves the worth of his ancient steam shovel by digging the entire cellar of the new town hall in a single day, dawn to dusk. It’s a good story, and the kids, pesky Ramona included, are rapt. But they’re especially interested in one detail that the picture book skips past:

As Ramona listened a question came into her mind, a question that had often puzzled her about the books that were read to her. Somehow books always left out one of the most important things anyone would want to know. Now that Ramona was in school, and school was a place for learning, perhaps Miss Binney could answer the question. . . .

‘Miss Binney, I want to know—how did Mike Mulligan go to the bathroom when he was digging the basement of the town hall?

As I said, I was going to chop off the excerpt there and leave you with, “Anyone who places that much importance on being able to get to the bathroom probably has…” (…you see where I’m going with this.)

But when I kept reading, I found a part I’d forgotten: Miss Binney’s response.

Miss Binney’s smile seemed to last longer than smiles usually last. . . .

‘Boys and girls,’ she began, and spoke in her clear, distinct way. ‘The reason the book does not tell us how Mike Mulligan went to the bathroom is that it is not an important part of the story. The story is about digging the basement of the town hall, and that is what the book tells us.’

Miss Binney spoke as if this explanation ended the matter . . .

Miss Binney’s blunt summation, “not an important part of the story,” read from my present perspective, suddenly struck me as incomplete and misguided, as well as indicative of a larger problem in the way we’re socialized in school. Here Ramona and her classmates are thinking critically about a basic human function, and Miss B., the civilizing influence, the authoritative mouthpiece of society, is standing in front of them and explaining that it’s not important. As the story goes on to remind us, Miss B. showed her class the bathroom first thing, and she’ll surely lead them there in single file the requisite number of times a day, but other than that she doesn’t want to talk about it, doesn’t want to hear about it, and doesn’t want it popping up in her picture books.

Ramona—and good for her—learns from this that there are some lessons school won’t teach her. For now, at least, she “knew and the rest of the class knew that knowing how to go to the bathroom was important,” but for how long? How long until this understanding is beaten out of her by well-meaning teachers and other prudes? How long until she’s pretending her digestive system doesn’t exist and whispering the word bathroom like a shameful near-obscenity, if at all? And from there, how long until she’s bashfully tacking “Sorry, TMI” onto descriptions of stomach upset in a support group or a doctor’s office—or keeping quiet about it altogether?

Am I being melodramatic? Maybe a little. But whether or not I’m taking away what Bev wanted me to (and, judging from this article, I’m probably not), it’s what I’ve got. Sure, Miss Binney’s not precisely saying that using the bathroom in itself isn’t important; she means that it’s not related to the overall story, which is about the value of a good day’s work done right. But, even setting aside the implication that  access to a bathroom and the necessary breaks to use it are not important to a good day’s work (which is in itself a troubling idea about labor to be teaching to our little future workerbots in public schools, and one beyond my ability to properly dismantle in the parenthetical space I’ve granted it here), Miss B.’s message includes more than her spoken words. Her clear discomfort, her abrupt response, her effort to shut down the dialogue and move on—all of these things tell the tykes that the bathroom is not something one should talk about.

I understand that early education teachers must live in constant fear of the off topic, and I understand that this is not without reason. Still, I wish Miss B.’s response—and the response of the real teachers on whom she is no doubt based—had been different.

I wish she’d said, “Good question, Ramona.” I wish she’d said, “Sometimes writers leave stuff out, even really important details like this, because they’re focusing on other things.” I’d love it if she’d said, “You know what, Ramona? That’s a plot hole that has never occurred to me in all my years as an educator. You just might make a fine editor one day.”

In sum, I wish she’d taken the question seriously and faced without discomfort a subject no one ought to disown, least of all a teacher of kindergarteners (a poop-obsessed clan if ever there was one). Because if we were all taught from kindergarten age to speak up about things that struck us as strange or unfair, and to discuss those things that strike us as compelling or important, we might have a better educated, more self-assured, and perhaps more just population.

More specifically, if we were taught from a young age that the bathroom, and what happens there, is important (which it is—digestion affects virtually every system in our bodies, and what comes out at the end of the process is just as worthy of attention as what goes in at the start) and that it’s okay and important to talk about it, more of us might talk to our doctors about the strange things we’ve noticed in our own bathroom habits, and digestive disorders from Crohn’s to colitis to celiac to food intolerances to IBS, that chimerical beast—might be discovered and dealt with earlier.

Moreover, if it were taught that it’s important and okay to talk about the bathroom, more kids might grow up to be gastroenterologists or digestive science researchers, because those fields might be recognized as the incredibly intricate and fascinating areas of study they are, rather than being widely considered the least glamorous and least compelling arenas of medicine. If it were important and okay to talk about the bathroom, we might have found a cure for ulcerative colitis by now; we might have a working celiac vaccine by now; we might have banished the diagnose of IBS and replaced it with true knowledge and solutions by now. If it were important and okay to talk about the bathroom, we might even be a bit closer to making that talk truly less important by eradicating digestive dysfunctions.

Finally, if it were important and okay to talk about the bathroom, we might be able to stop losing people (including many who are, in the grand scheme of things, not much older than those kindergarteners) to suicides precipitated by the depression that attends many digestive disorders, because they might feel comfortable speaking up about it and getting help, instead of becoming more and more hopeless and more and more humiliated by their unimportant condition until life itself starts seeming unimportant, too. (And, again, because we might have more researchers turning up results that could tangibly ease their symptoms.)

In short, although I know teachers have lesson plans to stick to and criteria to meet, I can’t help but feel that an important part of any teacher’s hard day’s work done right should be to encourage students to speak up about the things that trouble or confuse them, especially those things that concern the very most basic stuff of human functioning. And yes, that includes the bathroom.

Asking these questions shouldn’t make you a pest. It’s the refusal to listen to them that’s really annoying.

Photo © daveparker | Flickr

Photo © daveparker | Flickr

All excerpts from Ramona the Pest, © Beverly Cleary 1968.

Please share your thoughts! If you have kids, do you encourage them to speak up about “uncomfortable” topics? Do you speak up about digestive issues, if you have them? Are you (or your kids) shushed for talking about the toilet? How might we go about increasing our comfort level with this topic on a societal level? And do you think we should?

P.S. I know celiac disease isn’t all digestive trouble—trust me, I know—but this isn’t really a post about celiac disease. It’s a post about the BATHROOM. Which is, to me, very important.

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Celiac disease is not a game. But it should be!

I’ve always wanted to invent my own board game. As a kid, I was the mastermind behind several new games, including Cops and Robbers II—an elaborate affair involving a three-strikes-you’re-out-via-electric-chair rule (the strikes cleverly tracked by attaching clothespins to the unlucky robbers’ T-shirts)—and Orphans, which was exactly what it sounds like and always starred a resourceful eldest orphan child who thrived in her new pseudo-maternal role (played by me, every time). These games were a hit in my neighborhood (or at least in my own head), but a decent board game was always beyond my reach. Turns out, it’s hard to invent a board game. You need a head for logistics, design skills, and, above all, I felt, an imaginative concept.

Then again, if you pay attention to the board games market, you begin to see that innovative concepts are few and far between. I swear, every board or card game introduced in the past ten years has been a remake of an older game that required no special equipment, a mash-up of several previously published games, or yet another addition to the -Opoly family. If there’s one thing I’ve learned from my extensive research, it’s this: forget innovation and just rip someone off.

With this rule in mind, I’ve come up with a new board game called Sorry!—The Celiac Edition.

Photo © schrierc | Flickr Creative Commons

Photo © schrierc | Flickr Creative Commons

For this game, you’ll need a board, pieces, and numbered cards from the game Sorry! (which is, by the way, itself a ripoff of Parcheesi).

Although it could be said that for 3 million Americans, this is already the Game of Life, the game is for 3 to 4 players. Every player except one represents a celiac patient and, unlike in the standard version, receives just one of the 16 pawns.

The remaining player represents Gluten. Assigned based on highest cruelty level as determined by popular vote, this player gets all the remaining pawns.

As in Sorry!, the object is to get your pawn from Start to Home, here known as Health. The players all have their own Start and Health spaces, because every road to health is unique.

Play proceeds clockwise, beginning with the sickliest player—again, determined by popular vote. Players draw one card per turn and move their pawns according to the numbers on the pawn. To move his/her pawn off of Start, a player must draw either a 1 or 2 (or, for added realism, 1 only). Gluten is not bound by this rule and may proceed from Start as soon as at least one other player has a pawn in play.

If Gluten moves one of his/her pawns onto a space already occupied by another player’s pawn, that pawn must be returned to Start and the player begins again. Sorry!

If a player draws a card directing him/her to move his/her pawn onto a space already occupied by one of Gluten’s pawns, the player’s pawn must still be returned to Start, because gluten is gluten, no matter how you come by it. Sorry!

Because Gluten has many more pawns in play than anyone else (it’s everywhere!), most players will likely return to Start many times over. Sorry!

If a player besides Gluten moves his/her pawn onto a space already occupied by another player’s pawn, a card is drawn. If even, the players advance each other’s knowledge of the gluten-free lifestyle and are both allowed to remain on the spot. If odd, they confuse each other with misinformation they learned on the internet and must both return to Start. Sorry!

When any player besides Gluten reaches the midway point on the board, Gluten must take one pawn out of play permanently. This signifies the players’ improved ability to manage a gluten-free lifestyle and increases the likelihood that they will eventually make it to Health.

As in the standard game, when a player’s pawn occupies one of his/her own “safe” spaces, he/she is safe from Gluten but may still draw a negative numbered card and be forced to leave the safe space of his/her own little gluten-free counter in his/her own little gluten-free kitchen.

Also as in the standard game, at various designated “slides,” players may skip their pawns forward a few extra spots toward Health. However, if a pawn encounters Gluten at any point along the slide, it must be returned to Start. Once again—sorry!

Photo © LifeSupercharger | Flickr Creative Commons

Photo © LifeSupercharger | Flickr Creative Commons

An accepted—and encouraged—variant calls for beginning the game with all players (except for Gluten) blindfolded. Players must keep their blindfolds on until they reach the midway point; until this time, Gluten reads their cards and implements their moves for them. Depending on personal preference, the player representing Gluten may choose to disclose information about other players’ progress toward Health and say “Sorry!” when sending their pawn back to Start, or leave the players completely in the dark until they have progressed far enough to take their blindfolds off. (I often feel this is the way I’m playing: unsure of how far I’ve come, what mistakes I’ve made, or whether I’ve even moved from Start.)

The first player to reach Health wins—unless that player is Gluten. When one of Gluten’s pawns arrives at Health, it is returned to Start and remains in play. Gluten will never go away, but provided the other players persevere, Gluten never wins.

Sorry!

Tell me about your favorite board game (with a gluten- or allergen-free twist, if you like) in the comments…as long as it’s not Monopoly, because seriously? No one really likes that game.

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