Category Archives: On a serious note

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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Playing spoons

Are you a spoonie?

Photo © Holger Eileby | Flickr

Photo © Holger Eileby | Flickr

No, I didn’t mean Moonie. The word spoonie is a catchall term for people with chronic illnesses or disabilities. I first learned it from Rachel’s fantastic blog Do I Look Sick?and then I started seeing it all over: in other blogs, Tumblrs, Twitter bios and hashtags, even tattoos.

It’s a catchy name, in my opinion, because it’s a bit silly (and therefore a more pleasant self-descriptor than, say, patient or sufferer—ugh) and because it brings together people who share similar concerns but risk never realizing it because of the differences between their particular conditions.

The term comes from “The Spoon Theory” by Christine Miserandino, Christine’s story of explaining to a friend how it feels to live with lupus. Since they were at a diner, Christine used spoons as a visual aid. She collected a pile of them and said that these were her spoons for the day. Everything she needed to do for the day, simple or complex, would require one or more spoons. She then talked her friend through her daily routine to demonstrate the choices and sacrifices involved in living with a limited amount of spoons. There’s a sweet end to the story—click the link to read it in full. (You can also play a demo to get the idea.)

The spoons, of course, are simply a metaphor for energy. Not necessarily a perfect one: After all, sometimes energy just seems to disappear for no reason, which spoons do not, unless they’re being collected in someone’s bedroom awaiting a dishwashing session, or being snuck out from under your nose in a game of Spoons.

Photo © tsmall | Flickr

Photo © Tom Small | Flickr

Still, the story spoke to me in a way that stories in this genre generally don’t. It perfectly captured how I feel when my friends want me to, e.g., stay out later than I planned: If I do it, I’m choosing to throw away my entire next day because I’ll be too tired to do anything. And if I’m too tired on a Sunday to do my errands and laundry and cook for the week, those things most likely won’t happen at all that week because I’ll be too tired after work to do them. Not to mention that my body does at least a little better with routine, and I hesitate to lose that edge by messing too much with my sleep cycle. To say all that is so much more whiny and defensive than simply, “I’m out of spoons.”

Of course, everyone has their own energy level, and many healthy people—particularly mature people—do think about how best to parse out their energy to avoid burnout. But I, with my lack of nutrient absorption and all that, have fewer spoons than a lot of my healthy 20-something friends do, and more to lose by using them unwisely.

Lately, despite careful GFD adherence, I seem to have even fewer spoons. Avoiding cross-contamination in a shared kitchen adds extra little steps to my routine, all of which take spoons. Gluten fear probably snags a few more spoons. Plus, giving up caffeine has been like dumping an entire cutlery drawer into the trash. (Upside: I’m sleeping more. Downside: All that sleep is really cutting into my writing time.)

Pretty, and probably super gluteny, wooden spoons  © Alan Levine | Flickr

Pretty, and probably super gluteny, wooden spoons © Alan Levine | Flickr

Since learning that I have an actual disease with a real name, I’ve cut myself more slack when I don’t feel up to doing something, and my friends have, for the most part, borne it patiently—though it has been suggested that I use being sick as a crutch for laziness or antisociability. Probably in at least a few cases that’s true (and a tendency I need to work against), but overall it’s more that I see this as a time to be extra careful with my health. To use my energy well in hopes it gets me through this healing stage more quickly. To keep up with the things I most want and need to do now, and save some things for, say, six months from now. To be the best spoonie I can be.

Although I identify with the spoonie community (that’s a fun phrase to say out loud), I recognize I’m extra fortunate in that, with just diet changes and no medication, my energy should increase, eventually. Eventually, I should have more spoons. I’m also well aware that I have a whole lot more spoons than a whole lot of people, and that I’m very fortunate and privileged to have the ones I’ve got.

This is the last day of Celiac Awareness Month, and I started the month intending to be more aware, generally, not just celiac aware. Although I’ve had fewer blogging spoons available this month than I hoped (spent a few of them on giveaway-entering), I’m ending it on the same note, aware not just of celiac disease and gluten sensitivity but also the full spectrum of spooniedom. We’re not the same, but we’re similar. If you’re a spoonie, you’re welcome here. Use your spoons as you choose, and no, I won’t steal them from you while you’re focused on the other cards you’ve been dealt.

How do you feel about the word spoonie

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Not enough celiac awareness? I’ve got plenty.

So we’ve come to Celiac Awareness Month. I’m excited for all of the special features and extra blogging everyone will be doing this month, and maybe I’ll even get out to an event or two in the real world. But for myself, I’m mostly going to keep doing as I’ve been doing. Because I’m already celiac-aware. Celiac-hyperaware, you might say. If you split open my skull to check, my brain might look something like this:

celiac_aware_brain

Okay, maybe with a little less space for spatial awareness. But you get the picture.

Point is, I already devote a lot of gray matter every day to thinking about, talking about, writing about, obsessing about celiac disease. If I could only remove tiny hunks of my brain tissue and implant them in other people’s brains to repopulate their awarenesses, then they could think a bit more about it, I could think a bit less about it (and more about my novel), and we’d have ourselves a healthy celiac awareness ecosystem. Like a fecal transplant!

In a small way, that’s what I’m trying to do with this blog. (The awareness transplant, not the fecal kind.) Although, let’s be honest here, most of you are pretty darn celiac-aware already.

When I learned I had celiac disease, I started from a point of heightened awareness. I’d been researching food-related illnesses for some time—call it a hobby—and in my professional life I worked (and still do) with gluten-free cookbooks. I also reaped the benefits of living in a place and time that is in fact more celiac-aware (or at least gluten-aware) than ever before.

But I definitely became more aware once I had it myself. I started this blog, I saw celiac symptoms in everyone I knew, I began musing on grandiose ideas like hosting gluten-free speed-dating events or providing gluten- and allergy-free birthday cakes to kids whose parents can’t afford them. So far, these ideas have foundered on the shoals of logistics. If you live in New York and want to talk about any of them, please get in touch!

Although I’m enjoying this blog and being a part of the smart, supportive, friendly community here on the internet, I’ve struggled with this. Given that I have celiac disease and I think a lot about celiac disease, I feel vulnerable to the claim it’s “self-indulgence” more than “celiac awareness” that fills my brain. I feel guilty.

For example, when I wrote about the connection between hunger and celiac disease, I looked into how one could donate gluten-free food. But then I thought, where was I before I knew I had celiac disease? And even setting that aside, where have I been in general? The hurricane that wiped out huge portions of the New York metro area happened months ago, and no doubt the best time to begin contributing would have been in October.

Plus, hunger was of course a fact long before that, a systemic problem affecting an enormous population nearby me and worldwide. I knew that well before the fall of 2012. Why haven’t I been better about contributing to the solution? Why has it taken me having a problem to want to help others? And why is the idea of donating Rice Chex so much more appealing to me than the idea of donating money to a general fund for the hungry?

Then I get cynical. I wonder, does every celiac disease advocate have celiac disease? Are all food allergy advocates people who have, or whose family members have, food allergies? Are all antiracism activists all people who have experienced racism? Are all GLBTQ activists GLBTQ? Are all feminist activists women?

Is all activism selfish?

Are we all too wrapped up in ourselves to get involved in helping people whose concerns are foreign to us? And is a disabled person who spends his life advocating for disability awareness less noble than an abled person who does it?

I believe the answer to all of these is no. There are people who advocate for others almost reflexively, whether or not there’s a personal connection. There are entire industries built around nonprofits and public service that allow many, many people to work or volunteer in support of awareness or advocacy campaigns of all kinds.

And furthermore, I don’t think activism is really cheapened by being beneficial to its advocates. If someone spends a lifetime advocating for the rights and happiness of a population to which he happens to belong, is that so bad? Plenty of other people are part of the same population, and not doing much to help it or any other group.

A life of service is a good life. Sacrifice and selflessness can support a life of service—but only to a point. If you feel unconnected to your work, you’re more susceptible to burnout. And if you have the impulse to help but allow yourself to be stymied by regret that you didn’t help enough before, or aren’t helping enough people, or aren’t helping for the right reasons, then you won’t end up being helpful at all.

Part of any awareness campaign must be an awareness of just how many things there are to be aware of. There are good and bad causes, selfish and selfless concerns competing for everyone’s attention at every moment. By focusing our energy on one concern, we’re setting aside others.

I aspire to be aware of suffering, injustice, and inequality, broadly speaking. I hope that my daily words and actions demonstrate this, and when they don’t, I hope to be called on it so I can do better. I hope that as my life evolves and settles, I find the time and the energy to help more people more than I do now. And in the meantime, I’ll strive to be self-aware about my own divided awareness.

That said, bring on the Bob’s Red Mill giveaways. I’m ready.

Happy Celiac Awareness Month, folks.

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Hunger, service, advocacy, and pizza

Domino's Wisconsin 6 Cheese Pizza Slice

There’s a homeless shelter in walking distance of my apartment, where I volunteer once a month. It’s “transitional,” meaning it’s intended for families who need short-term housing assistance (though I’m not entirely sure what “short term” means, because I volunteered there several times last autumn, then recently signed up for the same volunteer project again and encountered many children I recognized from the fall). The project I do is called “Read to Me.” We volunteers come in, read with one or two kids each for about 45 minutes, then the kids do a craft, then they get pizza.

As you might expect, the reading is tolerated but the pizza is the main event. The kids get jittery and excited as pizza time nears, chanting, “We want pizza!” and—even more tellingly—actually settling down upon being told that was the condition for receiving the pizza. The kids are of all different reading levels, all different personalities, and all different shapes and sizes, but they’re united in their love of pizza.

But one kid, small for his age, chanted along with the rest but barely nibbled the very tip of his slice, getting his hands smeared with grease but otherwise hardly touching the pizza. When the others were clamoring for seconds, he just sat quietly. I couldn’t help but notice, and to wonder why this would be. Obviously, there could have been any number of reasons why this kid wasn’t eating his pizza: maybe he’d had breakfast late, maybe he was picky, maybe he didn’t actually like pizza but enjoyed joining in the collective effervescence of anticipating it. There was no real reason to jump to the conclusion that pizza made him feel sick, but I did wonder if that could be it. 

For a kid who has certain food intolerances or celiac disease, pizza could be a painful present. I wondered if there was any chance he did, and if so whether he was diagnosed and whether the shelter staff was aware. I wondered whether their being aware would make any difference. Introducing gluten-free options to a pizza party for 30 kids adds logistical issues and extra expense. This particular party was no-frills: plain cheese pizza with juice drinks and fruit snacks that were already in the shelter’s cupboards. The only difference might have been that this boy would have been told not to eat the pizza, to simply go without.

I know I see the world through gluten-colored glasses recently, and I try to work against my own tendency to see celiac everywhere. I’m really not claiming that this boy has celiac disease. But watching him not eat that pizza got me thinking. From a statistical standpoint, it’s of course true that some people in homeless shelters have celiac disease or food allergies. I am not sure what kind of food is provided on a day-to-day basis in homeless shelters, but given the ubiquity of pizza and cake as special treats and the high representation of wheat and allergens in, for example, public school cafeterias, I have a feeling there isn’t much accommodation of special dietary needs. I wonder if any accommodations are made to avoid or treat diabetes. If anyone knows more about this, I’d love to hear from you in the comments.

Similarly, some families whose incomes qualify them for food stamps must contend with food allergies or food-related disorders like celiac disease. This is troubling because, according to the image below, the most subsidized and therefore cheapest foods in the US are wheat, corn, and soy—two out of three of which are on the list of the top eight allergens, and one of which of course contains gluten. (And corn really isn’t a particularly nutrient-rich food compared to other whole grains and is often used in highly processed forms such as syrup.)

60609_375547115892353_1317881117_n

As much as I’m in favor of cooking from scratch using whole foods, and as much as I feel that this can in the long run be considerably cheaper than convenience foods, convenience foods really are more convenient than whole foods, or at least they seem as though they are—especially to a parent with multiple jobs, long commutes, health issues of their own, older and younger family members to support, and any number of other issues that impact the energy and time folks have available to cook. And gluten-free/otherwise “safe” (dairy-free, organic, low-sodium, low-sugar, etc.) convenience foods are almost always more expensive and difficult to find than their counterparts.

1166663921_00905Sure, I might consider it easy and inexpensive to buy a package of corn tortillas and a few cans of beans, sauté them with onions and garlic and spices, top them with cheese, tomatoes, and lettuce. With this kind of simple recipe in one’s back pocket, there’s not much need to ever buy a premade meal. But people need to know the simple options available, and they need to get past the initial grocery shopping barrier, where a stressed shopper may find it easier to throw a few bags and boxes into a cart and get in line rather than visit several aisles to select fresh ingredients. Then, even if the time to cook a fresh, lower-sodium, lower-sugar, no-allergen meal is about the same as to cook, say, Hamburger Helper or Kraft mac & cheese, people need to know and believe that it is.

I don’t think parents of any economic bracket are feeding their kids peanut butter if it’s going to send them into anaphylactic shock—though please correct me if I’m wrong—but for parents of children with celiac disease who must choose between feeding their kids food that makes them ill or not feeding them at all, the “correct” choice is clear but incredibly unfair. Feeding a kid with celiac disease a sandwich is “just” going to cause them discomfort, albeit in some cases severe discomfort (as well as long-term intestinal damage that can be reversed in the future). Living Without covered this topic some time ago in this article, which includes this wrenching quotation from a mom discussing the available options at her local food bank: “My daughter will just have to live with diarrhea.”

But she shouldn’t have to. No one should. People who have (or whose children have) celiac disease and who can’t afford groceries, much less pricier gluten-free staples like bread and cereal, need to be able to get gluten-free food from shelters, food banks, and soup kitchens. Foods stamps need to cover gluten-free or allergen-free food. Companies need to donate things other than peanut butter and wheat pasta to food banks (which, from what I can tell, actually prefer to get donations of money or time from average citizens, since the foods donated are sometimes unsuitable). We need to provide support for those in need that addresses all their needs. 

I found out about Food Bloggers Against Hunger yesterday, and I didn’t try to officially sign up since it was so last minute and I’m not really sure I’m a food blogger anyway. But I felt inspired to join in, so I wrote this post. Check out the other posts and consider sending a letter to your Congress reps asking them to protect SNAP funding.

I fully understand that in a time when we’re fighting to keep even the financial assistance we already provide to the hungry, it may seem excessive to ask for even more specialized care. But I think it’s important. Celiac disease advocacy, though important, seems to often focus on issues of available food and awareness in restaurants and, recently, in college dining halls. As important as this may be, it concentrates our energy on spaces that already cater to the relatively privileged. I feel that we as celiac or food allergy advocates need to broaden our scope, to focus on the pressing daily reality of starvation in our country and in others. I’m just not totally sure how to do it, which is why I’m opening this up to you now.

Do you agree we as celiac or food allergy advocates need to broaden our scope? What concrete things can we do for those of us who are struggling to get by? What things do you do already to help the hungry, whether food-restricted or not? Do you support SNAP funding?

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