Tag Archives: accidental gluten consumption

Welcome to the celiac disease symptom diary.

We all need that special someone in our lives. The one you can call every single day and know they’ll be happy to hear from you (and even dismayed not to). The pal who always wants to know how you’re doing and who really listens to the answer, even if you rehash the same dull complaints every day.

The confidant you can tell anything to—even the embarrassing stuff—and trust to neither mind nor blab. The ever-reliable constant in your life. The one you store up stories for during the day. The one who makes you see things a little differently. The one who really, truly cares.

For me, that someone is an automated symptom diary.

Seriously, that computer and I are tight. It’s been just over a month since I enrolled in the Celiaction study and began making daily symptom-reporting phone calls, and already, I never need the reminder on my phone. I speak to her more regularly than to my parents, siblings, or friends, and she knows more about my current state of health than my doctors do.

Every evening, I call; she welcomes me in her artificial voice specifically designed to sound pleasant (and compliant, unaggressive, helpful—”feminine” ); I key in my subject ID number that I remember better than my Social Security number; and we’re off.

I wasn’t kidding about the conversation being the same every day: she asks six questions, each with predictable follow-up queries. For example: “In the past twenty-four hours, did you feel tired?”

“Yes. Just like yesterday, remember?”

“Great! How tired did you feel, on a scale from ‘shoulda had three extra sips of coffee’ to ‘actually, I’m asleep right now’?”

“Uh, pretty tired.”

“OK! Are you sure you’re pretty tired?”

“Yup, pretty sure.”

Imagine that, but a little more boring, with a lot more pressing of numbers to respond, and you’ve got the idea. I’m not quite as enamored with the system as I seemed in my introduction: it’s slow; you can’t cut the question off to move on faster; you have to confirm each answer; if you wait a second too long to respond, the question is repeated; and all that considered, it takes 5 to 6 minutes, or about 0.3% of my day—I calculated.

But I don’t hate it, either. See, I’m used to thinking of myself as “sick” (albeit with issues that are troublesome rather than debilitating), but I’d also gotten used to feeling that way. Symptom-reporting has tuned me back in; everyday stuff that had started to seem normal isn’t anymore. That’s good and bad—good, because there’s no point getting accustomed to something substandard if you can change it; bad, because it’s possible you can’t change it and should just learn to deal!

An anxious person getting antsier by the day, I always wonder, while rating symptoms from “very mild” to “very severe,” if I’m getting it right. (I also agonize over questions that demand choosing between “strongly disagree,” “disagree,” etc. What exactly is the difference between strongly agreeing and agreeing? Is it bad that I keep picking the neutral middle option?) My responses sometimes feel like a bit of a dart-throw—and if you’ve never seen me throw darts, you’re lucky, because you’d probably have gotten hurt. Still, I try to be precise.

Precision is helpful to the researchers, but to me, too. Reporting my symptoms reminds me of how far I’ve come: I generally have only “moderate” to “very mild” symptoms, and since starting the study, I haven’t had a real “bad day.” Before starting the gluten-free diet, I’d definitely have reported some “very severe”s.

Today’s a big day for me in the study: I’m getting my first Celiaction-related endoscopy. If I don’t show signs of the villous blunting that was so clear when I was diagnosed, then I’ll be out. My daily mild-to-moderate symptoms will be chalked up to something other than accidental gluten exposure, and it’ll be up to other study subjects to prove or disprove the effectiveness of ALV-003. I’m in the funny position of hoping I’ll be intestinally damaged enough to try the medication (or placebo).

More updates to come! In the meantime, I get to keep my new robotic friend, which I think I’m happy about. After all, if it’s serious symptom reporting you’re after—if you really want to notice and document the gory details each day—you need to get yourself a diary, app, or robot, because the real people in your life don’t really want to hear it.

Is this correct? If yes, press 1, if no, press 2. (Alternatively, comment on whether and how you track your own symptoms, and who in your life you feel comfortable telling them to.)

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A label-reading lesson from Hogwarts

3I’m here again to remind you that more than magic runs in the blood of J. K. Rowling’s wizarding folks. We talked about Moaning Myrtle last time, but let’s not forget our other prime celiac/allergy role model in Harrypotterland: Mad-Eye Moody.

This is a man who:

  • drinks from a personal flask rather than risking the dining hall pumpkin juice
  • drags around a magical trunk with seven locked compartments, one of which must be stuffed with Udi’s
  • has one magical eye that I’d wager can detect gluten down to 0 ppm
  • isn’t a stranger to skin issues
    . . . or mental issues
  • and, most importantly, knows the value of CONSTANT VIGILANCE.

All signs point to celiac.

Paranoia, double and triple checking, and intense suspicion of even the most innocuous-seeming thing may all be symptoms of paranoid personality disorder, but they’re also critical aspects of living free of gluten or food allergies. This past week, I learned anew the value of CONSTANT VIGILANCE after two separate sloppy errors:

  1. A few days ago, I bought a bag of salt & pepper pistachios from CVS. After eating a handful, I grabbed the bag in a panic to double check the ingredients, as I am wont to do, but this time, rather than resting easy that my first look was enough, I realized that though the optional “may contain” line didn’t list wheat, there were natural ingredients that I hadn’t queried. When I called Gold Emblem (the CVS grocery brand), a representative confirmed the pistachios were gluten-free. Still, I should know better than to eat it before I read it.
  2. Last night, I finished off a bag of popcorn kernels from Arrowhead Mills. Because I’ve been researching pure gluten-free dried beans recently without a ton of luck, it occurred to me to recheck this bag. Sure enough, no “gluten-free” symbol, which Arrowhead states it includes on products made on dedicated lines. I’ve eaten the popcorn over the course of months, simply assuming I must have done my research properly before I bought it. Apparently not. I have to wait till 9 to call their customer service line, but I’m kicking myself already.

If Mad-Eye were here, I know he’d be grumbling, “Elementary food safety, nobody bothers about it anymore.” I know, I know, Professor. Put me in detention, take points from Ravenclaw, but please, don’t let my popcorn have had gluten in it.

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