Tag Archives: celiac disease

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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The luck o’ the Irish

Photo © YankeeNovember3

Photo © YankeeNovember3

Are you wearing green today? I am! I’m not fully Irish, but I’ve always felt most attached to the Irish bit o’ my heritage (maybe it comes of being named Molly and having an older brother named Patrick—if you’re reading, happy name day). Lately, with all the St. Patty’s Day fervor—Irish soda bread recipes right and left in the blogosphere, viridescent-clad ladies walking arm-in-arm down the street belting “My Bonnie Lies Over the Ocean”—I can’t help but let my thoughts drift to the Emerald Isle. In particular, I’ve been musing on the luck o’ the Irish.

Given the colorful (and I don’t just mean green) history of the Irish people, this phrase has always confused me. Sure, the Irish gave us four-leaf clovers and leprechauns, but it’s not as though the Irish are particularly lucky, all things considered. They’ve faced oppression, famine, prejudice, and internecine strife; their heritage has been reduced, in the United States at least, to a single day of green food coloring and daytime binge drinking per year; and the international financial crisis of the past several years hit them, well, not exactly like a pot of gold. As my thorough internet surfing has confirmed, my confusion is well founded. Experts suggest that the phrase may have originated as a slur at worst or an ironical joke at best. In other words, the luck o’ the Irish is no luck at all.

I’ve heard again and again that the Irish also have bad luck when it comes to celiac disease. The Irish have the highest rate of celiac disease in the world, I’ve read; western Ireland apparently has it even worse than the rest; and the Reverend Peter Green even used JFK’s Irish heritage as additional evidence in his case that the president may have had celiac disease. How’s that for an end-of-the-rainbow reward?

But…when I started looking into the origins of this claim, I found a 1970s study indicating a 1 in 300 prevalence of celiac disease in Ireland. Although multiple articles since then have referenced this statistic to shore up the claim that the Irish are disproportionately affected by celiac, the going statistic for the prevalence in the United States is 1 in 133—clearly a higher probability than 1 in 300. And the more recent the study or source, the less likely the author is to claim that celiac strikes more often in the Irish population. The most recent data seems to indicate the highest rate of celiac disease appears in the Saharawi population in the Western Sahara—not an Irish- or otherwise European-descended population.

So, have the Irish have gotten luckier, or the rest of the world a little unluckier? Or is it simply that the authors of the original study were unlucky in their margin of error?

Photo © cuorhome

Photo © cuorhome

I’m not sure. But as a proud part-Irish lass, I feel lucky to know there’s no pressing need to blame my celiac diagnosis on my Gaelic forebears. Plus, although some celiac-stricken Celts may feel unlucky to lose their Guinness and soda bread, their true national treasure, the potato, is naturally gluten-free. Personally, I count this as good fortune indeed.

Happy Saint Patrick’s Day! I hope your eyes, Irish or otherwise, are smilin’.

Are you celebrating today? Cooking anything special? Perhaps enjoying a pint or two of green beer (or Green’s beer)? Do you, too, find it hard to feel unlucky when potatoes aren’t blighted?

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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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A revised hygiene hypothesis (with tips for the hypothetical slob)

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Photo © pfly | Flickr Creative Commons

Researchers, as you likely know, are eager to learn why food allergies, gluten intolerance, and celiac disease appear to be on the rise. Many are fond of the hygiene hypothesis, which states, in a nutshell, that decreased early exposure to bacteria—i.e., being too clean as babies—predisposes us to all kinds of autoimmune and allergic BS.

I’m fond of this hypothesis, too. I’ve been known to turn down offers of hand sanitizer, citing it as my reason. Still, I propose that it is incomplete. The full hypothesis should read:

Good hygiene may cause celiac disease, but bad hygiene keeps it strong. 

We all know this on a basic level, and some people don’t even seem all that blown away by it. I’ll mention, shuddering, that having this disease means I’ll need to wipe down countertops for the rest of my life, and they stare at me as though wiping down countertops were something they’d always done. People diagnosed with celiac disease who know how to wield a sponge are lucky; they’re one step closer to good health. But those diagnosees who trend toward the slovenly side must cultivate a neat streak, and (as you may recall from my ode to mess) it’s a heavy leaf to overturn in a day! I would contend that a leading cause for a lack of response to a gluten-free diet, right up there with non-adherence, is poor hygiene.

Sloppy sufferers who have spent weeks on a strict diet and still feel ill may need to look beyond the standard “sneaky gluten” hiding places. For these hypothetical sufferers, I’ve taken the liberty of compiling a list of additional warnings. Please keep in mind that the below suggestions are intended to address a strictly hypothetical celiac patient.

  • If you bite your nails or put your hands to your mouth, you may be picking up traces of gluten. This is especially likely if you don’t tend to make a specific point of cleaning under your fingernails.
  • If you were accustomed to eating breakfast at your computer before diagnosis and if you ever dropped a Cheerio (or several) onto your keyboard, you might be picking up cereal residue every time you touch said keyboard. If you then put your hands to your mouth—say, if you have continued to eat breakfast at your computer—you might be ingesting particles of gluten.
  • If you are a green type who carries your groceries home in a tote bag, and if you have also eaten a hunk of apple cake out of said tote bag on the subway, and if you happen to have not washed that tote bag since before diagnosis, you might be ingesting cake crumbs that are stuck to your potatoes (if you aren’t the most finicky ever about washing your produce).
  • If you have been known to wipe your hands on your jeans when no napkin was available, and if you happen to have not washed those jeans since before diagnosis, and if you continue to use said jeans as a napkin and then put your hands in your mouth, you might be ingesting traces of—really, who knows what at this point.
  • If you are partial to eating in bed, and if you don’t fret too much over dropping crumbs in said bed, and if you haven’t washed your sheets since before diagnosis, and if you bite your nails or put your hands to your mouth in your sleep, your dream about eating cookies may not be so far off from reality.
  • If you drop a fork on the floor and if you decide to use it anyway without washing it first, and if you haven’t swept your floor since—charitably speaking—before diagnosis, you may be consuming forkfuls of gluten.
  • If you have always been an unrepentant slob, and if you haven’t yet changed your ways, and if you still feel sick as a dog, you might want to think about quitting your nail biting and doing a few loads of laundry. One way or another, it’ll probably do you good.

Like I said, this post is all about hypotheses and hypotheticals. The above list is not even a little connected to my personal life. However, you may be interested to know that I did recently quit biting my nails and do a few loads of laundry. Before sitting back down at the computer to eat breakfast.

If you have more hygiene suggestions or tough love for the aforementioned hypothetical celiac patient, feel free to include them in your comments!

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