Tag Archives: endoscopy

So, did I get into the Celiaction study?!

Sorry, guys. I didn’t mean to hold out on you, but you know how summer gets. You’re busy with your NEW projects, like relearning to play the guitar or jab-cross-hooking at the local kickboxing studio, all while trying to soak up as much sunlight as you can on those glorious long weekend days. The computer is the last place you want to be (especially if—cue the whining—you’re still trying to avoid screens in an effort to kill your sleep problems).

As I’ve mentioned, before officially enrolling in the Celiaction study I had to undergo an endoscopy (with multiple biopsies) to prove I still have intestinal damage and can therefore reasonably blame my ongoing symptoms on celiac disease, rather than a mystery ailment, hypochondria, or “somatization disorder.”

The endoscopy went down last week and was about as much fun as it always is to eat and drink nothing for twelve-plus hours, don an IV bag and a precariously fastened tent of a hospital gown, and get a camera stuck down your throat and into your intestines. (Getting paid for it, I admit, was pretty fun.)

no gluten hospital bracelet

My hospital ID and “allergy” bracelets. I also had a big “NO GLUTEN” sign on my bed in case someone gave me crackers while I was too drugged to resist.

For extra enjoyment, I woke up in the middle of the procedure. I was certain I was going to throw up and suffocate myself, but I stayed still, expressing my panic only through my now-wide-open eyes. I distinctly remember my doctor saying, after she noticed I was awake and before they put me under again, that I was being “such a good patient.” (That may be an anesthesia-induced hallucination, but I’m proud of it nonetheless.)

Celiaction study coordinator with my biopsy samples!

Shipping my intestines off for inspection

The study coordinator kindly consented to be photographed with the package of samples taken from the intestinal lining of yours truly, en route to the lab. I went home to sleep it off, and then—like all of you have been doing, I’m sure—I waited.

Are my guts damaged enough?, I wondered. Oh, please, let my guts be damaged enough.

Well, the verdict is in . . . and so am I! I’m not sure yet of the exact Marsh score, but the biopsies showed mild damage—an improvement over the “diffuse subtotal to total villous atrophy” I used to have, but not a full recovery. So, yay! I’m in the study! I’ll keep making my phone calls and soon I’ll start taking either ALV003 or a placebo.

No one will know which I receive—not me, not the researchers. Many other things are equally uncertain. Will I feel better? If I do, will it be due to the drug? The placebo effect? The kickboxing? Or just time, steadily continuing to do its work?

Because it’ll be so uncertain why I’m feeling however I’m feeling in a few weeks or months, the study coordinators have asked me to refrain from publicly sharing my health progress during the trial. Out of context, my symptoms or lack thereof won’t reveal anything about the medicine’s effect, but my reports still might unduly influence someone else in the study who happened across this blog. In the name of Science, I’m happy to oblige the request (and was flattered to receive it!).

So, this is the last you’ll hear from me for now on how I’m doing (middlingly). I’ll still likely write about the study, just not my symptoms. If you find yourself dying to know how I am, and you aren’t in the study yourself, I welcome any and all questions, however personal, by email. Otherwise—assuming my summertime laziness subsides—I’m sure we’ll find plenty of other stuff to talk about!

What are your summer projects? How was your endoscopy experience?

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Roses are red, gluten is blue (at least, that’s what it makes me, and probably you too)

Loyal readers will have noticed that I’ve been quieter than usual the last few weeks. There are a few reasons for that—some of which I’ll be talking about soon—but I do expect to get back to my twice-a-week schedule eventually.

In the meantime, it’s Valentine’s Week, and in case you’re worrying I don’t love you, I thought I’d reassure you with a poem. Then—because you deserve it, and “less is more” is a lie—I decided to reassure you with a bunch of poems.

This is a gift that keeps on giving, because it means this year you don’t have to confine yourself to blowing a kiss (air kisses are guaranteed gluten-free, even if hubby’s been cheating on you with cookies) or making one of those heart-shaped chocolatey things everyone’s been posting about since January. You can do your boo one better and make your card gluten-free, too!

Jot one of these puppies down in a lopsided heart for guaranteed romance:

Roses are red, violets are blue,
If I could eat gluten, I’d share it with you.

or

Roses are red, violets are blue,
I quit eating bread, but I’ll never quit you.

Or if you, like me, will instead be observing SAD (Singles Awareness Day), or if your taste in chocolate tends more to the bittersweet, I’ve still got you covered. Try this:

Roses are red, violets are blue,
I’d rather get glutened than make out with you.

or

Roses are red, violets are blue,
I’d go on a date, but I’m sick with the sprue.

violets are blue

. . . violets are blue . . .
Photo © M | Flickr

Then, for the descriptivist, there’s:

Roses are red, violets are blue,
Quinoa is white, and sorghum is too.

And, for dear old gluten:

Roses are red, violets are blue,
You hate my guts, and they sure hate you.

Normal small intestines mucosa

. . . and normal small intestine mucosa are pinkish-purple.
Photo © Ed Uthman | Flickr

If you enjoyed, spread the love! It is almost Valentine’s Day, after all.

Share your own gluten-free riffs on the classic in the comments (bonus points for using any rhyme other than “you”—it’s tricky!), and have a happy SAD week.

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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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The Week of the Nutter Butter

It was heartening to learn yesterday that not every doctor’s office gives out crackers after a celiac endoscopy. (There were also some less heartening doctor stories, but that’s pretty much par for the course—this is going to be another one, fair warning.) But the conversation raised another question for me: If you (or your kids) have been tested for celiac disease, did you eat gluten while you were waiting to hear the biopsy results?

Snide remarks about Keebler’s aside, I must admit—I did. While I waited for my results, I chowed on garlic naan; I slurped cookie dough pudding from Sunshine Happy Something-or-Other Bakery in Chinatown; I went to a dear friend’s apartment for dinner, where he served up mushroom-barley soup. (“It’s gluten-free!” he said. “Besides the barley?” I said. “…Oh,” he said.)

But, mostly, it was the week of the Nutter Butter.

I ate Nutter Butters almost every night of the week after my endoscopy before my diagnosis was confirmed (nine days, actually, not that I was counting). I’d get to the end of the day thinking, “Maybe I won’t do that again today,” and then I’d buy a pack anyway. The guy at the corner store came to recognize me and probably wonders where I’ve been lately. If I’d been more honest with myself at the start of that week, I could’ve bought one family-size package and done the whole thing much more cost-effectively. This may be pushing the limits of strange eating behaviors to which it’s okay to admit on the Internet, but on several of those nights I opened up the cookie sandwiches and spread them with jam. (Great with strawberry, and surprisingly good with fig.)

41283530-260x260-0-0_Nabisco+Nabisco+Nutter+Butter+Peanut+Pattie+10+5+O

I ate those things like I’d never be able to again—which, of course, I was correctly assuming would be the case. (Oh, sure, Pamela’s has a peanut butter cookie, and there are knockoff recipes all over the web, but if it’s not in the shape of a peanut and mass-produced it doesn’t count.) Do I even like Nutter Butters that much? I don’t know. It was a compulsion.

By Monday, going in to week two, I was ready to quit. I just needed to know I had celiac, wanted my doctor to get it over with and tell me to lay off the Nutter Butters. But Monday his receptionists put me off all day, so on Monday night I enjoyed my daily fix. This is the last time, I thought.

Tuesday morning, I called again, and hung up dejected at the response that my results still weren’t in. I spent the day playing phone tag with the two receptionists who took turns feeding me conflicting stories: “We’re waiting for a fax from the lab”; “We’re waiting for the doctor to get in and review the results”; “Oh, actually the lab still hasn’t sent them”; and, finally, “I have your results, and everything’s fine! You don’t have any bacteria in your stomach!” (Yeah.)

By that point, being told “Actually, everything’s fine” was not an option. What about my 97 (or 95, or 98, or 90, depending on what source you check) percent chance of having celiac disease based on my serology results? What about all the psyching up I’d been doing for the past few weeks? What about all those stupid Nutter Butters? I’d been eating them as a final hurrah! A farewell! And what the heck did bacteria have to do with anything?

I let myself get more and more frantic on the phone, thinking that would eventually get me my (real) results—which it did, when I strong-armed the receptionist into faxing me the results, found that they did indicate villous atrophy, and called back to demand another number at which to reach the doctor, who had by then left for the day (because I had “called too late”).

Even though I’d been sick for two and a half years and for much of that time accepted I’d just always be sick, suddenly the thought of spending even one more evening eating peanut butter sandwich cookies opened up a vast black maw above me. (An exaggeration? Fine, it was cloudy with a chance of Nutter Butters.) And whether I got my results that day or not, couldn’t I have just gone home and not eaten Nutter Butters? Couldn’t I have gone gluten-free at any time I wanted? Did I really need that harried 30-second phone call with my doctor to know, “You’re positive. Try to avoid wheat, rye, barley”?

Yeah, for whatever reason, I did. I needed certainty; I needed a real turning point; I needed closure. I’m pretty sure that without that lame conversation with my doctor, I would’ve gone home, bought my mediocre sandwich cookies, and steamrolled a few last villi. Then spent all of Wednesday trying not to let the same thing happen again. Funny how habits work, isn’t it?

Since receiving my diagnosis, I’m proud to say I haven’t (knowingly) eaten a single speck of gluten. And after a bit of a slump, the past few days I’ve even felt my cooking mojo stirring again. I’m looking forward to putting the finishing touches on my kitchen setup, feeling better, and eating well for life. Though it’s probably going to be a while before I try out a Nutter Butter imitation.

Tell me some of your food memories (fond or otherwise, -free or otherwise) in the comments! Do you miss Nutter Butters and or Oreos?

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