TMI...?

So...as much as I wish it weren't so, I really don't feel all that well, although I'm not nearly as terribly unwell as I envisioned I might be during this, so things could be worse.


I was talking with a dear friend earlier today -- vaguely -- about how I am feeling.  She gave words to the very thing I -- and probably others -- have wondered.  Could all these symptoms be in my head?  I am, after all, most definitely eating gluten -- something that I know has the power to slowly kill me, something I know has made me very unwell on more than one occasion.

I suppose it could all be in my head, but, I really don't think so...for several reasons.  

First, when I went to the gluten challenge last week, I was fairly certain that I had received the drug being studied in this investigational study, Montelukast.  I was so certain, in fact, that I wrote a blog post entitled "Time Capsule" that is scheduled to post the morning of my last study visit.  This -- the symptoms I am having -- is not what I expected.  To preserve the double-blind nature of the investigational study as much as possible, the details of why I believed I had received the Montelukast are outlined therein, and I will not reveal them until after the investigational study has concluded.  For that same reason, despite my growing curiosity, I have not visited -- and I will not visit -- Dr. Google.

The second reason pertain to the symptoms that I have experienced when I know I am not thinking about the fact that I am eating gluten such as the nausea that woke me from my sleep Friday night and the wave of swimy, unsteadiness that washed over me as I got out of bed seconds after waking this morning.

And the third reason happened earlier today.  I met a friend for lunch, and after we decided to walk a little.  She recently had surgery and isn't walking a lot, and I think she knew I wasn't feeling great, so it wasn't an ambitious or fast walk.  We stopped in a store so I could make a purchase and as I was standing by the counter, a wave of dizziness suddenly came over me and the perimeter of my vision darkened, graying out the edges of the store.  I felt woozy as I held on to the counter and waited for my vision to clear.  I blurted out something about suddenly not feeling well and my friend asked me if I wanted to sit down.  Not being able to imagine letting go of the counter, I said no, I would stand there.  The moment passed, but I can only say that that is so like how I felt before I was diagnosed with Celiac Disease that I simply cannot believe I manufactured it.


But all of that aside, I am having physical symptoms that are unusual for me.  While I definitely do have headaches, my headaches are specific, and usually directly associated with a change in atmospheric pressure.  My headaches are distinct -- a steady, strong pounding behind my right eye as a storm brews, relief coming only when the storm breaks -- and those are the only headaches I have.  Until last week.  

At some point last Tuesday, between my consumption of bread during the gluten challenge and my release from the University of Chicago Medical Center, I developed a mild headache.  It was different from "my" headaches, in that it encompassed my entire head.  While it was not as bad as "my" typical headache, it persisted, walking alongside me, keeping pace for days.  In fact, it was not until I sat down to write this (nearly a full week after the gluten challenge) that I realized that at some point in the last few hours, that particular headache, after slowly ebbing is now finally, thankfully, gone.

But what is not gone are the gastrointestinal symptoms that started last Tuesday afternoon -- a few hours after the gluten challenge began -- and which have morphed into a cluster of symptoms which simply cannot be ignored.  (I'll add here, too, that since I never had gastrointestinal symptoms before my diagnosis with Celiac Disease, the presence of these new (and unwelcome) symptoms would further support my position that this is not all in my head.

I feel like my stomach has taken a vacation from its job...or at least as though it is now moving at the speed of sludge.  I am hungry, and yet I feel full...a fullness that starts in my abdomen and extends up into my throat -- to a point so clear that I could draw a line across my esophagus.  (If I visited Dr. Google, which I will not do, I am sure I would be tempted to read about EoE.)  I feel like I have to go to the bathroom...and I do...and yet, I'm never done.

I am queasy, nauseated even, at times.  Earlier today, as I was talking to my younger daughter over the phone, my mouth pooled with saliva, a feeling and taste I associate with that which happens just before vomiting.  I felt cold, then hot.  I swallowed hard.  I took a deep breath...and then another.  And the moment passed.  

But these moments are becoming more frequent...and they make my wonder what is happening in my crampy gut.  I picture unwelcome particles of gluten roiling around in my gut, and wonder if I am slowly damaging my small intestines by eating gluten without the protection of the Montelukast, or is it just that my body needs time to adjust?  Or...am I (and how I so hope this is not the case) a study "failure" -- an outlier for whom the Montelukast will not work?

Eating has become a project.  What do I want?  What sounds good?  What smells will not offend?  Last week I met a friend for breakfast.  I eat eggs because I think they are important in my vegetarian diet, but I do not like to prepare them.  Eggs (especially those prepared by someone else) sounded good -- until they were in front of me.  I pushed my food around, picking at the potatoes under the eggs.  I took my leftovers home, thinking I might try again later, but I could never quite imagine eating those eggs, and so, after a few days, I discarded my leftovers.  I had better luck with my baked potato from today's lunch.

When I was a child, my father regularly had terrible, smelly, loud gas...and huge gulping burps.  If my father ever passed gas that wasn't loud (SilentButDeadly), he would get up and quietly (quickly) walk from the room, leaving us in the wake of his deadly stink bomb.  His burps were incredible -- loud, belched releases of stinky air from within.  

While I remember my father's gassiness well (and have wondered about it in the wake of my diagnosis with Celiac Disease, to be sure), that has never been me.  These days, I feel a near-constant bubble in my chest...the need to burp slowly working its way up, out of me...again and again.  My abdomen is bloated and full, puffy, even -- despite the fact that I am not hungry, not eating as much as usual.  I imagine something angry happening deep inside my stomach (an image enhanced by the loud grumblings that come...and then go), with the gas building up until there is nowhere for it to go but up and out or down and out, in a hot SilentButDeadly whoosh.  While my family is on to me, I cannot quite reconcile the gas that I have had over the last few days with something that has come from within me.  


I remind myself of what the investigational study protocol spelled out very clearly -- that those who have symptoms are unlikely to experience them for more than a few days.  Clearly, I am beyond a few days.  These symptoms should resolve -- either because the Montelukast will take over and protect my small intestines or because...well, that's not as clear, but I'm opting to trust in science on this one.