Eating (the) Gluten

Day 0.

Today.

Today -- Tuesday, September 13, 2016, I ate six (6) grams of gluten.

But first, I took a dose of the study drug.

I was allowed to eat it plain, or with peanut butter, or with peanut butter and jelly.  I went for the peanut butter…and while I wished it was toasted, in some ways I am glad it was not toasted.  I had forgotten what bread with gluten in it is like -- light, airy, fluffy.  The stuff I eat (and really, can we call it bread?) is hard, and without much texture or taste (and I’ve tried a lot of gluten free breads before I arrived at my gluten free “bread” of choice).

After I finished eating the bread, I was observed briefly, and then I was allowed to walk around or sit where I wanted as long as I stayed close enough to return to the hospital for a blood draw at exactly the four-hour post-dose mark. 

I decided to walk.

I went to the University of Chicago for graduate school and I love the area. 

As I walked, I ignored the nagging headache that was slowly forming.

I had in my mind that I would make my way to Medici on 57^th so that I could take chocolate croissants (which, if memory serves me correctly, contain an ENTIRE Hershey's Chocolate Bar in the middle) and the most incredible cinnamon rolls I can ever remember eating (BEFORE Celiac Disease) home to my children.  These cinnamon rolls are made out of croissant dough, and are light, buttery, flaky and are packed with awesomely moist cinnamon filling and juicy raisins.  While I wouldn’t be eating those gluten-laden foods, it somehow seemed fitting to purchase sinfully good gluten-y goods on this day.

As I walked on, I started to feel slightly queasy. 

I ignored that funny feeling in my stomach.

I had some water. 

I sat in the shade.

I practiced some positive self-talk.

I could do this.

I wanted to do this.

When I stood, I felt slightly dizzy, so I paused, and waited for the moment to pass.

I found stable footing.

I walked some more.

An elderly couple -- he with a cane and she using a walker -- passed me.

Eventually, I arrived at Medici on 57^th, where I achieved my goal of purchasing chocolate croissants and cinnamon rolls…and the most incredible looking pecan pie (Susan is in the middle of a pecan challenge, and I couldn’t imagine a more fun way to eat pecans if I tried) I have ever seen.

As I made my way back to the hospital, my head felt swimmy.

I sat in the shade.

I had some more water.

I wondered at the wisdom of my walk, but stood, found stable ground and continued on, walking slowly, staying in the shade.

I assessed my symptoms, knowing I would be asked to catalogue them:  queasy -- no, maybe nauseous;  a very full, almost bloated feeling…and the sensation that I could draw a line across my throat exactly where that fullness ended;  some gas, some burping;  a funny feeling in my head -- dizziness and a sort of disconnected, light-headed feeling;  a growing headache different from the headache I get with impending bad weather and I was feeling sort of clammy, almost like I was having hot flashes, but not quite.

I arrived back at the hospital with about an hour before my blood draw.  I settled myself in at the Starbucks adjacent to the hospital building I needed to go to, bought a cold sparking water and sipped it slowly.  I tried to work, but couldn’t focus.  I read e-mail, wrote some and played a game on my phone.

I started to feel better. 

I reported for my blood draw, and recounted my symptoms to the study coordinator.  She was most interested in my report of nausea, and at that, texted the doctor overseeing the investigational study, who came to see me before clearing me to leave the hospital.  We talked.  She reminded me that some subjects had had a similar experience. 

The doctor also reviewed the gluten dosing protocol going forward with me, and suggested that I consider splitting the dose into smaller amounts to be eaten at various intervals throughout the day.  She suggested that consuming smaller amounts over the course of the day might decrease my symptoms.  

At the time, I found myself thinking just eat it all at once -- to get it over with.  Now, I can barely stand the thought of eating that bread tomorrow -- I feel like todays’ bread is just sitting in my stomach, a giant lump of unfriendly gluten.  But tomorrow is a new day, and I am committed to this.

About thirty minutes after I left the hospital, as I was driving home, I suddenly felt much, much worse.  I was suddenly very nauseous, and hot and sweaty.  It came over me in a very unexpected wave, and I was glad for the traffic I was in, as I turned up the air conditioning and took deep, deep breaths. 

I felt as if I was on a precipice -- if I could just talk and breath myself through it, the worst would pass, and I would be fine.  Well, maybe not fine -- but okay enough. 

As I inched my way homeward, I started to wonder if eating something might help me.  I wasn’t really hungry, and the thought of food made my stomach churn, but still.  I hadn’t had much to eat, and I wondered if all that gluteny bread was, in fact, just sitting in my stomach.  While I couldn’t imagine eating, I decided I should try to eat.  But what?  Eventually, I decided on a simple, plain baked potato.  The first bite was the hardest, and after I had taken a few bites, I was full, which was odd given how little I had eaten all day (yogurt in the morning, before the gluten challenge), the gluten challenge bread (with peanut butter)…and then nothing until the bit of baked potato.

As the day draws to an end, I feel better, I think…but still not perfect.  I find myself wondering…what if this is me on gluten, with Montelukast?  And if that’s what this is, imagine what it would have been like without the Montelukast?