Category Archives: Breadcrumbs in the wilderness

Sep 19 2013
18 Comments
Breadcrumbs in the wilderness

Bloated

Do you get “the celiac bloat”?

Spend enough time in the gluten-free blogosphere, and you’re sure to find posts about bloating. Many consider it the first sure sign that they’ve consumed gluten. Some even share photos, as though to prove they aren’t imagining things (which, no doubt, many of them have been told).

Though I won’t be posting a photo, I wanted to share a bloating story of my own. This one’s from the archives: an email I sent to my dad back in 2010.

The only context you need is this: my junior year of college, I lost a third of my body weight. (On purpose, although I kept it going a bit longer than I should have.) Just weeks after hitting my “target” weight, I became very ill.

By the time I wrote this email, I’d started to experiment with what I now see as Band-Aid management strategies. They were helping, but not entirely—and not at all with what seemed to me the worst part.

. . . the thing that’s most upsetting is that my belly is constantly swollen and bloated, and gets progressively worse throughout the day. After I worked so hard to get in shape, now I can’t wear my new clothes because they’re too tight. I haven’t had any days for a while where the pain got as bad as it did those few days, so I’m really only dealing with mild discomfort most of the time (although sometimes pretty bad discomfort by the end of the day). But I just feel depressed and embarrassed all the time about the way I look.

I guess you’ll probably think that I’m noticing it more than other people are, and that’s probably true, but if I wore my fitted shirts people definitely would notice. By the end of the day my stomach is often so distended that I literally look several months pregnant. . . .

I’m afraid this will never go away no matter what I try and I’ll never be happy with the way I look or feel ever again. And I’m trying to gain some perspective because I know I could have far worse troubles, but it just seems so devastatingly unfair that at the time in my life when I should be my most healthy and look my best, instead I get this.

Note: This was originally all one very long paragraph. I’ve made cuts and added paragraph breaks because it was utterly unreadable. Sorry, Dad.

When I wrote this, I was strength training several days a week, “doing abs,” and running almost daily. To have this uncontrollable bloat “ruin” those efforts was frustrating, especially since I was more image-obsessed then than I’ve been before or since.

Back then, I felt I would rather deal with mild and increasingly worse discomfort every day possibly forever than be bloated. It was more important to me to look good than to feel good. Sad, right?

Since then, some of my other symptoms have improved. My weight has gone slightly up and down; I’ve worked out more or less consistently; and I’ve eaten more or less cleanly, on a few different diet plans (omnivorous, vegetarian, low-FODMAP, and now gluten-free). But the bloating has continued. I both feel bloated—that awesome “please just pop me now” balloonlike feeling—and look bloated—just a little, usually, but sometimes a lot.

sad mime holding onto balloons

See? Balloons make him sad, too.
Photo © Jorn Idzerda | Flickr

I’m in a healthier place now than I was then, body-image-wise. But you know what? I still find the bloating unfair (if not devastatingly), and I still find it depressing. Some days, I still want to just stay in bed.

Bloating is one of the symptoms that consistently pops up in descriptions of celiac disease, perhaps because it’s less graphic than the alternatives. But it also affects 10 to 30 percent of the general population, often for unclear causes.

Some people don’t think of bloating as a big deal. “Oh, everyone has that from time to time,” they might say (as a friend did to me back when I first got sick). Protesting that it’s different when it’s every day may or may not penetrate, but it’s true: it is different. Sure, in comparison to other symptoms—including my own!—bloating is mostly just a nuisance. But when it happens every day, it gets to you.

These days, I think of bloating as just one more frustrating aspect of a frustrating illness. One more daily bit of proof from my body that I’m not the boss of it.

One day, maybe, I’ll prove it wrong.

What’s your least favorite symptom of celiac disease or gluten sensitivity? Any good “bloat begone” tips to share?

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Aug 12 2013
8 Comments
Breadcrumbs in the wilderness

I’m gluten-free. I’m single. Do I need Gluten Free Singles?

Gluten Free Singles dating site

I am a gluten-free single. I have celiac disease, so I’ll never eat gluten again. I do still want to date…but what does that have to do with gluten?

Judging from the response to the newly launched dating site Gluten Free Singles (hereafter GFS), the majority opinion is “nothing.” Reactions to the site from the non-gluten-free have ranged from bemused to dismissive to downright derisive.

But the premise isn’t really all that crazy. Here’s why:

1) Eating gluten-free (really, truly, not-continuing-to-damage-your-body-through-lax-adherence gluten-free) is hard. Lots of packaged foods are off the table, and it’s recommended not to eat out at all, anywhere, until your symptoms have resolved, which can take six months to two years. Even then, most places boasting “gluten-free” menu items aren’t actually trustworthy. One bread crumb or a few drops of soy sauce cause harm, and most restaurant kitchens are too cramped and frenetic to prevent such contamination. Eating at someone else’s house? Forget about it.

2) Dating someone who isn’t gluten-free, if you’re gluten-free, is really hard. Not only because the person might not fully get it or even believe you. And not only because our dating culture is so intertwined with food—think dinner dates, ice cream cones on the beach, romantic home-cooked meals in. It’s also because you, as a gluten-free person, might not want to hold hands with someone who was just holding a sandwich, in case you forget and touch your own food afterwards. Or you may not want to tongue-kiss someone who drinks beer, because research suggests that food particles linger in saliva for hours in high enough quantities to trigger reactions. And, eventually, if you start thinking about moving in together, you won’t want your squeeze to move a bunch of gluten into your kitchen. Cross-contamination city.

3) Convincing someone who doesn’t need to eat gluten-free to eat gluten-free just so you can be together is really really hard. Because, let’s face it, eating gluten-free kinda sucks.

Given all of this, when I was diagnosed in January, my usual priorities—from intellect to appearance to love of board games—shrank to nothing compared to the need for a significant other to be either gluten-free or super supportive. (Here’s a flowchart demonstration.)

Since GFS didn’t then exist, I set out to hack OkCupid into a gluten-free dating site of my own. Under “stats,” you can label your diet vegan or kosher, but not gluten-free (an unfortunate oversight), so I couldn’t search that way. Instead, I dropped my usual criteria (“single,” “needs photo,” “minimum height,” even “male”—because if I’m going to make this work, I’ll need to be flexible) and searched by keyword. Show me, I asked, anyone who has mentioned “gluten” or “celiac” in their profile. ANYONE.

At that point, I learned why dating, even with gluten-free boys, is still hard:

1) The options, even in a metro area, are scant. After weeding out the profiles that claimed, “I love anything with gluten” or, perhaps worse, “I’m gluten-light,” I was left with…not many.

2) Not every gluten-free boy likes me. Of the handful I messaged, only half responded. Huh, I thought. Don’t they know they need me?

3) I don’t like every gluten-free boy. I learned this after meeting up with two of them. They were nice enough, but it turns out there’s more to compatibility than gluten-free.

I decided to put the whole thing on ice and focus more on fixing my own intestines than on finding a matching set. I learned my way around the diet, hunted down new recipes, started a blog. As for dating? Let it be, I thought. It’ll happen.

Six months later, I’m still single. You see? Gluten-free dating is hard.

Enter GFS. The solution, right? Well…maybe. It levels the playing field, sort of. Everyone is gluten-free, so you can concentrate on things such as, say, your sexual orientation. If the site manages to amass a large enough pool of daters, it could make dating more convenient.

At first glance, such convenience is appealing. But on further examination, it’s less so. In the founders’ words, this is a network in which “you never have to feel alone, awkward, or a burden because you are gluten-free.” This implies that around “normal” people, you do feel this way—but that shouldn’t be the case.

Of course, shared qualities and logistics play a role in every relationship. Some long distance relationships fizzle, and some couples whose lifestyles don’t mesh call it quits. But, says the idealist in me, those aren’t the relationships I want. I want a relationship in which we do compromise—even in big ways—and do it well, without breeding resentment.

My family and close friends, for example, have gone above and beyond in accommodating my gluten-free diet. My parents bought new cutting boards, bowls, and cooking utensils when I visited, because those things can harbor gluten. A friend brought gluten-free groceries to my “safe” kitchen and cooked for me there. My sister agreed not to eat gluten at home when we moved in together (and then found out she had celiac disease herself—but that’s a different story).

I don’t take their consideration for granted, but if these loved ones can do it, can’t a lover do it, too?

To join GFS seems almost to answer that with “no”—to suggest that a guy wouldn’t find me worth compromising for. I don’t want to send that message to a potential date, and I don’t want to date someone who feels that way about himself, either.

My dad has always said that true love is waking up to make coffee every day even if you don’t drink it yourself. In an admittedly larger way, that’s what I want for myself. I wouldn’t say no to a gluten-free boy (or hell, who knows, a girl), but only if we also fit in other ways. Should that match not appear, I’m sure I can find love with a non-gluten-free boy, one who will look out for me as loving people do—that daily cuppa, if you will.

I’m not saying there’s nothing appealing in the idea of meeting someone who shares my lifestyle, and I don’t think a website for gluten-free singles is worthless. I’m just saying that having celiac disease doesn’t make me worthless, or worth something only to others who have it. I am not only a gluten-free single, you see; I am also an intelligent, attractive, talented, ambitious, (mostly) confident young woman well worth a compromise or two.

So…will I join GFS? I can’t say for sure I won’t (I’m curious). But if I do, I won’t give up on meeting folks offline, and I won’t abandon OkCupid, either. After all, with all those 93% matches to choose from, I’m bound to find the one sometime.

Note: I originally posted this on Kinja in response to a Jezebel post about Gluten Free Singles. I’ve now reposted it in full here.

Gluten-Free Singles online dating logo

What are your thoughts on dating gluten-free?

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Jul 31 2013
3 Comments
Breadcrumbs in the wilderness, Really long posts

The big 6

On Monday, July 29th, I intended to write about a momentous milestone in my life. But I wasn’t sure what to say that I haven’t said already before.

Finally, at the end of the day, feeling the need to mark the date, I went with, in the manner of all aspiring and procrastinating writers today, a Tweet: “As of today I’ve been gluten-free for 6 months. That calls for cake.”

If you’re into brevity, you might want to stop there. (But if that’s the case, I’m not sure why you put up with my blog in general.)

In response to my proclamation, probably picking up on the mention of cake, one Twitter buddy asked me if I ever cheat. We’ll come back to that one.

Another response came from Wendy of Palm Trees and Gluten Free, who wrote to congratulate me. She said, “It’s amazing how that date becomes as important as a birthday!”

I hadn’t thought of it that way, but it’s true. As on a birthday, I had that uneasy sense that I should feel different but don’t. Despite the importance we give to the occasion, a birthday usually doesn’t, in itself, represent a step forward. Sure, a few do grant you special privileges, like your 21st or 18th or 13th (if your parents truly didn’t allow PG-13 movies before then, that is). But by now, the majority of that kind of birthday is already behind me.

Instead, I’ve entered into that vast, undifferentiated stretch of road called adulthood, where birthdays are just markers of another year’s worth of life experience, thought of so rarely that I often can’t remember how old I am right away when asked. A birthday just means another year has passed. Not all at once, but second by second by second until 31,556,926 have fled.

Similarly, although six months’ worth of gluten freedom is a milestone of sorts, there was no reason to think that on the morning of July 29th I would wake up a changed person. Any change between the 28th and the 29th would have been so incremental as to be unremarkable. What’s important is the accumulation of improvements (however piddling) and experience over the course of those six months. Just like a birthday, this day meant no more than that I had made it a certain unknown percentage of the way through my gluten-free life.

As with a birthday, the amount of time the 29th marked seems simultaneously much shorter and much longer than it had really been. Shorter because, as has been observed again and again by writers more eloquent than I, it is in the nature of time to appear shorter when viewed backward than forward.

Longer because January 29th, the day of my official celiac diagnosis, wasn’t the first time I ditched wheat, barley, and rye. Almost three years before, I’d experimented with a diet low in pretty much everything thought to be tough on the gut (that’d be FODMAPs, and includes wheat, rye, and barley); I’d dabbled in “low-gluten” eating (which is basically a joke); and I’d done a whole-hog six-week gluten-free diet trial half a year before. Although it’s been six months of celiac-induced GFdom, gluten has been on my mind for longer.

Also because it’s been an intense six months. “I’m not sick because I’m stressed; I’m stressed because I’m sick”—how many times have I made that response? I still think it’s true, but it turns out not to be true that a diagnosis and prescription could take my stress away (hum that to the tune of the Berlin song). The certainty has eased some worries but added others: that the healing isn’t moving fast or far enough, that X, Y, or Z might have gluten in it, that I’m driving everyone crazy by talking about it all the time.

In honor of this date, I originally thought I might reveal all of my celiac symptoms on this blog (which you may or may not have noticed I’ve been quiet about, even as I bemoan our collective inability to talk about some of them). This wasn’t because you likely have any desire to know them but because I felt it would be terribly satisfying to cross off all those that had gone away.

But, after the sixth month, the truth is that few of what I believe to be celiac symptoms have actually resolved themselves. The gastro stuff is getting better, a little, but I still don’t know if the rest even are celiac symptoms. All I’ve gotten so far are “maybe”s and “we’ll see”s. To list what remains would be to jinx it.

So instead, dear readers, on this belated half-anniversary of my gluten-free rebirth, I leave you with only a promise: that six months, or twelve, or eighteen, or however many it takes from now, I will have crossed off more of that list. That I will not again succumb to the kind of complacency about my own well being that led to three years without a diagnosis. That I will beat this thing.

And—to answer my friend on Twitter—that no matter how long it takes, and how long it seems to take, under no circumstances and for no reason will I ever “cheat.”

Not even for cake.

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Jul 26 2013
10 Comments
Breadcrumbs in the wilderness

How many crumbs would a wood table suck if a wood table could suck up crumbs?

If you’ve been reading my blog for a while, you probably already have a sense of this, but let me remind you: I’m kind of an anxious person.

That said, I’m also a forgetful person. This combination means that sometimes I forget to be anxious until after something has already happened. It’s like my brain decides, “Hang on a second, I didn’t hear your heart racing. Let’s try that again.”

Throughout my school years, this tendency manifested itself in anxiety dreams about tests and report cards after I’d already received my grades. And, not to brag, but they were generally good ones—so what was I so worried about? Today, I keep up the tradition at work by hitting “send” on emails only to immediately scroll through them to check for typos or misaddressed salutations or other pernicious little errors—too late to take it back, but not too late to stress about it.

And, of course, if I run out of fodder for my after-the-fact fretting, there’s always gluten.

Take this recent example: my sister and I bought a table.

“What’s so stressful about that?,” you might ask (if you didn’t read the post’s title, that is; otherwise, you’ve probably already guessed, you smartypants, you). Here’s what’s stressful about that:

It’s a used table.

A used wooden table.

Now, a used wooden table is not in and of itself stressful. In fact, when my sister and I were at the store picking it out, I was quite relaxed. We spotted the table almost right away, so I didn’t have to worry we wouldn’t find one that day. We’d thought to take measurements of our kitchen before heading out, so I didn’t have to worry that it wouldn’t fit. We haggled down the price a bit and got some chairs thrown into the bargain, so I didn’t have to worry about price. And Salvation Army delivers—every few weeks, at least—so we didn’t have to worry about transport.

I didn’t even think to worry about gluten.

But yesterday, the table arrived (no returns allowed), and all of a sudden I thought to worry. People (including me) throw out wooden spoons and cutting boards after diagnosis, after all. How many times have you read that “wood is a porous material that can trap small amounts of gluten” (on sites like About.com). Wood is pretty much the first thing to go, after, you know, the sack of semolina you’ve been hoarding to make your own pasta with one day. And here I’d gone and introduced a big hunk of used wood right into my gluten-free kitchen sanctuary.

I thought it over. Just how much gluten could be in that table? Had its previous owners used it as a cutting board for bread, or rolled out cookies directly on its surface? Was there a baby in its former home who mashed her cereal—or Play-Doh—into its wooden grains? Did the family eat dumplings or empanadas or pierogies at this table? Pasta or pizza or pie dough? And how much of it, if so, would have gotten into the table itself? Was the table, even now, dropping crumbs onto the floor beneath it? (It didn’t seem to be…but gluten is small.) Would I gluten myself just by touching the table or eating at it? Should we leave it wrapped in the plastic in which it came? Or should I simply avoid eating at my own table? If I didn’t, would I steadily lose the gains I’ve made, and gain the antibodies I’ve lost?

In short: What. Had. We. Done?

I chewed my lip, wrung my hands, and ambushed my sister the moment she got home from work.

“We have a table!” she said, happily.

“Yeah!” I said, feigning cheeriness just for a moment. Then I dropped the ruse. “What if it has gluten on it?” I said.

My sister—clever, even-keeled sister—thought that one over for about half a second, and replied, “Well, we could just eat off of plates. And maybe use a tablecloth.”

Oh.

Right.

People use plates and tablecloths, don’t they? Somewhat regularly, even. Nice, comforting things, plates and tablecloths: things through which gluten—real or imaginary—cannot penetrate.

Feeling foolish, I nodded. “Yes, or placemats.”

“Placemats,” Althea agreed decisively. “I like that.”

With that, all my buyer’s remorse and postmortem nerves—suddenly as silly seeming as any of those report card nightmares in the light of day—evaporated.

Well, almost.

When buying secondhand, there’s always one thing left to worry about: that is, of course, bedbugs.

Indulge me with your thoughts on whether, say, an Udi’s cookie dropped onto a washed wooden table should be considered cross-contaminated, or tell me about the last time you made a mountain out of a molehill. Otherwise, have a worry-free weekend.

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