Farewell, for now

Anyone who has checked in recently has probably guessed this, but I have been meaning to make an “official” statement. So here it is: I’m taking an indefinite break from blogging.

Like most people with celiac or gluten sensitivity, I spend a lot of time thinking or talking about gluten—by necessity. Any time I eat anything ever, I have to think about gluten. I also work on gluten-free cookbooks in my day job. Plus, I take an experimental medication for celiac disease three times a day and report on my symptoms every night. All that adds up to a lot of time and energy spent in the pursuit of gluten freedom.

On top of that, I was spending a lot of time thinking about what my next blog post might be, writing the posts, editing them, sourcing images for them, promoting them, and reading and commenting on other blogs. All this was really enjoyable and I’m not complaining about it one bit. There is an amazing network of gluten-free blogs on this Internet of ours, and I loved being a part of it.

I was fortunate enough to be able to attend the second annual Food Allergy Bloggers Conference in Las Vegas this September, and I have felt guilty for not doing a write-up of it. It was such a good time and I got to meet so many bloggers I admire. I was there representing my company, but I still felt I had to explain my absence from blogging. As I ruefully laid out my reasoning, several people commented that they’d been through blogging burnout themselves.

I don’t know if my own burnout will be permanent, but I can say with confidence I won’t be blogging with any regularity in the near future. Right now I’m channeling my creative energies into other kinds of writing, reading way more books than I have for a while, rehearsing for a musical that goes up this week, and focusing on a whole bunch of other things.

This post is in no way intended to suggest that blogging about celiac and gluten is not a worthwhile pursuit. However, I’ve decided to step away from it, at least for now. I simply need the brain space for things other than celiac disease.

I’m proud of the writing I’ve done on this blog, and if you’re stopping by for the first time, I hope you’ll read, well, every single post, obviously. And if you’re a gluten-free blogger yourself, carry on! You’re doing important awareness-raising work and I will definitely still be checking in to try your recipes, whether or not I return to blogging.

To everyone who has read and engaged with my posts: Your support has been invaluable to me and I’ll miss connecting with you perhaps more than anything else about blogging. Thank you for reading. Seriously.

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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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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