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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What the heck is a FODMAP? (A low-FODMAP diet infographic and cookbook giveaway)

We’ve talked about FODMAPs several times here, but I have the feeling at least a few people out there still aren’t entirely sure just what they are. To help, my colleagues and I at The Experiment put together an infographic that I hope you’ll read (click on the image to view in full size) and share!

What-the-heck-FODMAP.Infographic.transparent

I know this is advertorial of me, since I edited the low-FODMAP books, but I truly believe the low-FODMAP diet is a game-changer for people with long-term, otherwise unexplained digestive problems. And it’s not just me who believes it—scientists, doctors, and dietitians worldwide support the diet.

Of course, folks should get tested for celiac disease and other gastrointestinal diseases before accepting a diagnosis of IBS and trying this diet. And of course, we should continue working to figure out why exactly people have these chronic gut issues and how to solve the problem for good, but in the meantime, this regimen might help.

Along with the infographic (design credit for which, by the way, really goes entirely to Sarah Schneider, who I think did a great job, don’t you?), I’m doing a giveaway of Sue Shepherd’s brand-new book, The Low-FODMAP Diet Cookbookto help spread the word. It has recipes for every meal and everyone, and as someone who has spent many a pre-lunch hour drooling over the photos, I can tell you they’re gorgeous. Enter using the Rafflecopter below, and good luck!

a Rafflecopter giveaway

So, do you feel like you know what the heck a FODMAP is? What are your favorite low-FODMAP foods?

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