Monday, November 7, 2016

Uncontrolled Celiac Disease

The real answers slid silently in overnight, their arrival announced by two distinct e-mails time-stamped three minutes apart from the University of Chicago’s MyChart e-mail address. 

Again, I hurried to access the hospital’s MyChart system.

When I clicked on the first lab report, for Gliadin IGA AB, the word “POSITIVE” jumped out at me.  I saw a value of 32, with a reference range in which anything over 20 was positive.

Remembering I had seen lab results for the same test after my intake visit on August 17, 2016 for the investigational study, I quickly pulled up those results.  NEGATIVE, with a value of 15. 

I marveled at the difference nine weeks -- six of them with daily doses of gluten -- had made.

And then I moved on to the next set of lab results, for Tissue Transglutaminase IgA.
Positive...with a value of 99, and a reference range in which anything over 30 was positive. 

Feeling fairly certain that the lab results for this test after my intake visit in August had also been negative, heart pounding, I quickly found them in my on-line chart and opened the results from the blood draw on August 17, 2016.  Negative, with a value of 15.

I checked in with Dr. Google, wanting to better understand the particularly high value for the Tissue Transglutaminase IgA test and was not surprised to read that such a high number is strongly consistent with “uncontrolled Celiac Disease.”  As I read on, I found several scholarly research articles that suggested a value of 99 or higher could result in a diagnosis of Celiac Disease without biopsy.  That's how conclusive such a high number is.
None of what I had been feeling was in my head...and it happened in just SIX weeks.

I tried to process what it all meant, and kept coming back to what I had been saying for a while.
Either the study drug (Montelukast) had not worked for me, OR I had received the placebo.

And while I suspected the odds of my having received the placebo were low, I felt certain that that's what I hoped had happened.

We know Susan received theplacebo in her clinical trial for her peanut allergy.  She was one of 9 subjects at her study site, two of whom received placebo. 

I would never expect the universe to protect me from receiving the placebo just because Susan had, but I will admit that I did think the odds of me receiving the placebo in the investigational study (12 subjects, 4 of whom received placebo), had to be pretty low, given that Susan drew the proverbial "short straw" back in February of 2014.

But how low?

Well…the social worker in me wasn’t entirely sure how to do the math…but I thought it was likely a function of understanding Susan’s odds, my odds, and then multiplying the two.  7.4%.  No.  Really?  

Just to be sure, I threw the question out to a group of VERY smart college classmates, one of whom (Anna Prescott!) provided this answer:

Pm = Placebo mom
Pd = Placebo daughter

Probability of Pm AND Pd = 2/9 * 1/3 = 7.4%
Probability of NEITHER Pm NOR Pd = 7/9 * 2/3 = 52%
Probability of Pm but NOT Pd = 7/9 * 1/3 = 25.9%
Probability of Pd but NOT Pm = 2/9 * 2/3 = 14.8%
Probability of EITHER Pm or Pd but NOT both = (2/9 * 2/3) + (7/9 * 1/3) = 40.7%

And so, my mathematician classmate arrived at the same answer I had (although with greater fanfare):  7.4%
Incredible, really.*

As I mulled that small number over, I scanned the lab results and e-mailed them to a friend.
And I waited.
And I waited some more.  I wasn’t sure she was up, and I didn’t want to wake her, but I wanted someone else to look at what I was seeing and assure me I wasn’t…crazy.

Eventually, she sent me a text message.
She had been busy with Dr. Google herself, and she was upset -- struggling to see how it could be acceptable for me to have participated in a study that would have made sick.

While I wish that hadn't happened, I find myself thinking exactly what I thought when Susan was in her clinical trial -- maybe this happened for a reason.  Maybe my participation will yield key data that will help researchers moving forward.  

As for me, I'm back to a strictly gluten free diet, and I don't miss my daily gluten doses of Cisco wheat bread (which I ate toasted and buttered almost every day).  I don't feel as much better as I thought I would -- whenever I eat, my stomach hurts.  And therefore, I'm not eating as much as I used to, but when I go too long without eating, I don't feel well, either.  Dairy, previously a staple in my vegetarian lifestyle, has become a trigger for severe gastrointestinal distress.

I know it can take months for villi to fully heal, so I am practicing patience.  I'm relatively confident that with time, my digestive system will heal.  Eventually, eating will not be synonymous with intense abdominal discomfort.

And maybe, just time...there will be a treatment...or maybe even a cure.  If I brought researchers even one tiny step closer to answers, I am beyond thankful to have been a part of the process.

*(Editing to add that another classmate of mine, Ann Russey Cannon, posted the following comment in response to my post which read, "I want to explain your probabilities a bit more.  If we were looking ahead to both you and your daughter participating (in the future) in the two clinical trials, then the probabilities that you calculated were, indeed, correct.  The probability that both of you would receive the placebo was 7.4%.  But since the two trials were independent - that is knowing whether your daughter received the placebo or not wouldn't affect whether you did or not - the probability of you receiving the placebo, knowing that she did, is 1/3.  And the probability of you receiving the placebo knowing that she didn't, is 1/3.  That is, the probability that you would receive the placebo was always 1/3.  And that isn't a particularly small probability.  Sorry.")  

After my classmate posted this comment, I pondered it, and after thinking about it, it made sense -- sort of.  A while later, I replied with a comment that this is exactly why I am a social worker.  As the day wore on, I found myself thinking that maybe this actually makes me feel...better.

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