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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14 thoughts on “So, did I get into the Celiaction study?!

  1. cav513 says:

    Since you can’t write about how celiac is affecting your health, you can turn to recipes or more fractured fairy tales 😉

  2. Laura says:

    I was disappointed that they didn’t have any doctors in NYC participating…I would think just from a population density point of view, they could have gotten a lot of people, including me. Good for you for participating!

    • Molly says:

      Laura, I’m based in NYC too and the folks at Columbia’s celiac disease center are in fact participating in the study, which is where I’m doing it. I had to reach out personally to them because for some administrative reason Columbia isn’t included in the database online.

      I heard somewhere that the researchers were only recruiting through the end of July, but since the “see if you qualify” section is still active on the Celiaction website, that may not be the case. I’d encourage you to reach out to the study coordinator (who is super super nice, by the way) and find out. Her contact info is:

      Study coordinator: Maria Teresa Minaya
      Celiac Disease Center at Columbia University
      180 Fort Washington Ave., Suite 936
      New York, NY, 10032

      • Laura says:

        Thanks for the info, Molly, I am in the early, pre-endoscopy, phase of the study, thanks to you! So sorry you WOKE UP during the endoscopy, that sounds rather horrible. I had to have a colonoscopy without the anesthesia because my blood pressure went too low, which was a bit bizarre, but waking up with a tube down your throat, yikes.

  3. Mary Kate says:

    Congrats? I think that would be positive, but it’s hard to say “yay!” to “I’m sick enough!”

    Next time you visit NH, let me and Denise know — maybe we can meet up!

    • Molly says:

      I haven’t actually gone yet! We’re going to a gluten-free bed and breakfast in the North Conway area from August 18th to 20th. Are you guys anywhere near there?

      (And I’ll take congrats–I know it’s weird, but honestly I’m glad to know I still have active celiac disease as opposed to a big question mark.)

  4. Congrats on getting in! And the kickboxing 😉 Hope you get some sleep soon and look forward to hearing all the study details when you can share them.
    -Dana (in midst of my move, missing Bklyn lots, even the stinky garbage smell… Ok not that)

  5. Vik says:

    I’m glad that the tests showed that your intestines were improving, yet you were still able to enter the program, b/c I know how much you wanted to. My endoscopy experience was ok . With 2 colonoscopies under my belt (har) already, I thought the prep for the endoscopy was a snap. Didn’t like it that I had to fast so long, since the test wasn’t scheduled til late afternoon, still, the prep was a breeze compared to a colonoscopy. I slept through the whole procedure, and ate the saltine crackers afterwards since didn’t have the diagnosis yet. I’m still trying to decide if I should get a repeat endoscopsy, (it has been 1.5 years) since not feeling great lately. I think these spells go in cycles, though?

  6. rachelmeeks says:

    After Joan River’s endoscopy mishap and reading this, I can safely say I WILL NEVER DO ONE EVER. I almost did once, but that was the time my doctor stood me up (AFTER I’d already donned the precarious gown and cold IV fluid) and I had to fire him.

    I COULD NOT HANDLE WAKING UP DURING IT. I would have flipped out and kicked people and probably died.

  7. rachelmeeks says: – hey, I featured you as one of my personal health activist heroes! Check it out!

  8. Fairy Queen says:

    You are very lucky that these researchers are doing all these experiments to help those with celiac disease. I am in Italy and I have told some doctors that carbohydrates cause me a lot of anxiety but no one has yet known the cause and they do not know how to give me answers and there is no research in progress but I hope that soon some doctor maybe will propose a research on this because I I am very sick when I eat pasta or bread or rice and there are still no drugs to avoid this malaise.

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