Category Archives: Sister Celiact

“I’ll go gluten-free on Monday…”

This is the final installment in my little sister Althea’s series of guest posts about being diagnosed with celiac disease. If you haven’t already, read the first and second posts.

If your doctor told you you had one month to live, what would you do?

This is, more or less, the question I asked myself every morning in June and July. Well, if we’re being precise, the question was a bit clumsier, something like: If your doctor told you you were “allergic to the gluten” (yep, that’s a quote), and you gave yourself a completely arbitrary period of time to continue eating gluten, what would you eat?

There were, as usual, many things that I wanted to eat. Thus was born my gluten bucket list.

This is one bucket I really want to kick. Photo © paulshen | Flickr

This is one bucket I really want to kick.
Photo © paulshen | Flickr

Learning that gluten is poison to your body probably made a lot of you go GF immediately. But my logic was, I had been poisoning myself for—who knows how long?—so giving or taking a month or two couldn’t make much difference to my gut. With this in mind, I decided to delay my gluten-freedom just a teeny bit.

[Disclaimer: I’m not arguing that this was the smartest decision I could have made. Cutting out gluten ASAP was obviously the healthy choice. But I knew I’d be making a lot of really healthy, really annoying choices in the future, so I was in no hurry to start.]

The idea behind this bucket list, just like with a regular old bucket list, was that I could go gluten-free, regret-free. It was meant to take me on a culinary journey, down memory lane to junk I hadn’t eaten in years (am I the only person who actually likes Zebra Cakes?), into the great beyond to treats I had never heard of, and, of course, into the pizza parlors and bagel shops of my brand new hometown.

Composing the list was surprisingly difficult. It’s like when you’re playing Scattergories and your brain is suddenly emptied of everything but pseudowords beginning with “N.” The celiac blogosphere is hardly helpful to the googler trying to increase her gluten intake. For example, Jane Anderson has this great list of gluten-free candy, but I couldn’t find a list of candy that does contain gluten, so I had nothing to work from. I almost forgot Twix!

My other major roadblock was that I got diagnosed just days before moving in with Molly, so all the meals I ate at home were GF. As for eating out, I often thought, Is that really worth the money/trans fat/effort? I’m sure I could make a gluten-free version of that, or there must be something else I could eat that would be more worthy.

My most memorable gluten extravaganza was at a Yankees game, where a couple friends helped me check off something that wasn’t on my list but should have been: fried dough, fried Oreos, and fried chocolate, all in one sitting (hey, we split them between the three of us, so on average, we only ate one fried delicacy each).

Fried chocolate is heavenly. If you’re a gluten-eater, get your hands (and your face) on some of this magic.

Fried chocolate (top right; front and center are the Oreos) is heavenly. If you’re a gluten-eater, get your hands (and your face) on some of this magic.

But in the end, I didn’t complete my bucket list. I never even got a Cronut (has anyone tried a gluten-free one?). Rather than the systematic search-and-devour mission I had imagined, my quest panned out more like a series of impulse deli purchases and accidental Wheat Thin binges.

Now it’s over, and I’ve been gluten-free for almost a month. I actually feel a bit relieved from the phony pressure I put on myself to eat a bunch of junk I didn’t even always want. There’s no shortage of GF junk food, after all. I hate to end on a dreary note, but the whole thing made me realize that it’s not the gluten I’ll miss, but the flexibility to buy snacks on the go or enjoy food with friends in any locale.

Well, dear readers, this is the end of my final guest post, but my very own sprue story is—unfortunately—just beginning. My current food quests? Perfect my homemade Grape Nuts imitation, and taste-test every gluten-free beer on the market. Wish me luck!

What did you all eat just before going gluten-free? What did I miss? (So much for regret-free.) Do you hate me for making you look at fried Oreos? (Sorry! I know it hurts.)

“But you can still have beer, right?” and other stupid questions

This is post #2 in Althea’s series of guest posts. If you haven’t yet, check out the first post here. You’ll laugh, you’ll cry. And not only because celiac disease is linked to mood disorders.

Lots of people really suffer from celiac disease, and they don’t get the recognition they deserve. But sympathy is even harder to come by when you have a disease that doesn’t make you sick. No one understands why I even know I have celiac, let alone why I can’t go out to eat anymore. So I get all kinds of annoying questions like the above—salt in the wounds of my beer-deprived soul.

I’m a soon-to-be success story, I want to tell them. The poster child for early screening! If you found a small tumor, you wouldn’t wait to treat it until it was causing you to have symptoms, would you? Same idea!

But still, they say (or, at least, their bemused expressions seem to), you’re not really sick. Surely, a crumb or two couldn’t hurt you. Maybe you won’t have to worry about cross-contamination like your poor sister.

For most celiacs, the suggestion that “a crumb or two couldn’t hurt you” is cringe-worthy at best (and smack-someone-with-a-cast-iron-skillet-worthy at worst). And in this regard I’m your typical celiac. I mean, 20 ppm is not a lot! And what’s more, I have no idea what’s going on in my body, or why, so I really wish everyone would stop acting like I have all the answers. Maybe a crumb or two would hurt me a lot, and I wouldn’t even know it.

But that’s the thing. I have no idea what’s going on in my body. So I wonder, too. After all, it’s conceivable that I’m less sensitive to gluten than some, and that’s why my symptoms are “subclinical.” On the other hand, it’s just as plausible that my immune system is as responsive to 20+ ppm of gluten as the next celiac’s, but it just hasn’t been attacking me for long enough to have destroyed my villi. I like to think that my villi are particularly resilient, holding off those barbarous T cells with some home-front war effort, like a Victory Garden.

This is a section of small intestine showing the villi, but it could just as easily be an aerial shot of some home-grown tomato patches and heads of lettuce. Photo © wellcome images | Flickr

This is a section of small intestine showing the villi, but it could just as easily be an aerial shot of some home-grown tomato patches and heads of lettuce.

When you start imagining your intestinal lining growing cucumbers, you know you’ve progressed from confusion to delirium. To remedy this, I turned to Google, but even He doesn’t fully understand. Classifications abound: latent, silent, oligosymptomatic, atypical, classical, refractory types I and II. But as far as I can tell, doctors pretty much leave it up to patients in my situation to decide whether and to what extent to go gluten-free.

Turns out, nobody knows anything. Are we surprised, dear readers?

This baby is NOT surprised.
Photo © Jordan Brock | Flickr

And now it’s your turn. Were any of you diagnosed with latent or silent celiac, or do you know someone who was? Does anyone know if latent/silent celiacs can get away with a crumb, or am I in denial?

What would you do in my situation? And can anyone tell me what’s going on in my body and why?!

Maybe I won’t have to worry about cross-contamination like my poor sister. And that would be, for lack of a better word, awesome (sorry, Molly). Hell, maybe I can have a whole sandwich now and then. (Okay, okay…but an itty-bitty garlic knot? Please?!)

[Editor’s note: No.]

For now, I am 100% gluten-free. I even started a new tube of toothpaste. I’m hoping to start seeing some health improvements, maybe some unexpected ones. I’m really hoping that my insomnia, anxiety, and ditziness—I mean, brain fog—are symptoms, not personality traits.

But I didn’t go GF right away. In fact, I created what I call a gluten bucket list. Come back next week and read about my quest to find—and eat—delicious things my lips will never touch again.

SISTER (CELI)ACT: two sisters, one diagnosis, zero gluten

This is the first of three guest posts by my sister Althea. (At least, she thinks it will only be three posts…) Enjoy!

Faithful followers of Based on a Sprue Story may remember me as the benevolent sister who agreed to forgo all glutenous foodstuffs (as well as anything that may have ever come into contact with a glutenous foodstuff) in her own home, out of respect for Molly’s dietary needs (and neuroses). What a thoughtful, altruistic sister, you likely thought. That’s what I thought, too, when we first made plans to get an apartment together.

There must be an Udi’s version of this by now, right?
Photo © Tamara Evans | Flickr

Just days before boarding the trusty old Lucky Star (may she rest in peace), however, I learned that I also have celiac. But there’s a twist. (No, not one of those donut twists, or the twist in your stomach, dear reader, at the mere thought of one of those donut twists—just a twist in the story.)

The twist is, I did not suffer for years from mysterious symptoms before getting this diagnosis. Sure, I had had some mild GI trouble from time to time over the past year or so, but everyone gets constipated once in a while, right? I was probably just eating too fast. Or drinking too much coffee. Not enough coffee? (Do yourself a favor and click on that last link—but only after you’ve finished reading this post.)

Me chopping parsley (a naturally gluten-free food) in preparation for our housewarming party (details to come).

In fact, I bet I would have ignored the issue entirely if I didn’t have such a good little awareness-raiser for a sister. Said sister urged me to get tested for the sprue (which, as my case illustrates, all  immediate relatives of a celiac should do, regardless of symptoms). I asked my school’s health center to do it, but the nurse practitioner there said it wasn’t worth it; “It’s not like you’re running to the bathroom every time you eat a sandwich,” she said. (Well, no, but that’s not really how it works, so… but, okay.)

In the end, I got the blood test when I was home briefly after graduation, and my antibody levels were off the charts. I haven’t had a biopsy yet, but a recent paper concluded that blood test results are strong enough evidence of celiac that a biopsy isn’t necessary.

So, apparently, I have celiac disease just as much as Molly does, which means I need to eliminate gluten from my diet just as completely as she does. Or do I?

In my next post, I’ll delve into the questions that get asked of someone who only sort of has a disease that confounds people enough as it is. Stay tuned!

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