TMI...2

Let me start by saying that I definitely feel better than I did the first time I wrote a TMI entry.  Well...maybe not better, but the worst symptoms have definitely decreased in intensity, which is good.  I would definitely be better if not for the new symptoms I am experiencing...


My gastrointestinal system is still not perfect, but it is better than it was.  I am definitely not feeling full and bloated like I was, and I am no longer nearly as gassy (to the great relief of my entire family) as I was.  The ever-present feeling of being constipated has been replaced by unpredictable and sudden urgent needs for the bathroom.  ("Potty emergencies" as a good friend called them while undergoing chemotherapy.  I remember thinking I knew what she meant at the time, but I have a whole new understanding now.)  I think the best way to explain how I feel is to say that it seems as though my digestive system, which seemed to have slowed to a near-standstill is now working at a more normal pace.

Earlier this week, during my Week 2 follow-up call, the study coordinator reviewed the standard questionnaire, now familiar, with me.  She asked about bowel patterns, with a very specific question that was something along the lines of:  "Are you able to completely void your bowel?"  I laughed...uncomfortably before replying "Well...yes, and no."  The study coordinator waited as I filled the silence by explaining that I can...eventually, but that it takes many trips.  I could hear her typing in the background, and thought once again that this investigational study is more intrusive than I ever imagined.  

I still occasionally feel queasy -- but that sudden pooling of saliva under my tongue, followed by a hard swallow and a deep breath or two -- or three -- no longer happens quite so often.  Sometimes these moments leave me hot, sweaty, shaky...even dizzy.  And other times, I feel that way without the nausea.  I still do not have much of an appetite, and struggle to find things that sound appealing to eat...and some smells and sights (raw egg nearly did me in earlier today) are really hard for me.   

Interestingly, while my digestion seems better, I have some new symptoms (issues?  complaints?).  First -- there is my left foot/ankle, which may or may not be related.  It is fine as long as I wear the boot, but when I take the boot off, I can see that it is still swollen at one very distinct spot, more on my foot than my ankle -- up and to the left of the ankle joint.  if I walk around without the boot on (don't go there), it hurts.  By the end of most days, I am happiest on the sofa, with my feet up.  (I think that would be true in life always, actually, but that is especially true now...)

And then there is the joint pain...in my right elbow, right shoulder, neck and just today in my hips.  These aches and pains are new, and not terrible...but having lived with them for a few days, I find myself remembering a time when I lived with terrible, excruciating, lay-awake-in-the-dark-for-hours joint pain -- for months.  I saw a number of medical professionals during that time -- including a rheumatologist -- and underwent rather extensive testing.  No one could ever figure out what was wrong, and eventually, the joint pain resolved, fading into a memory that (when I think about it) leaves me wondering if it was ever really -- if it could possibly have been -- as bad as I think it might have been.  This IS NOT that, but now, I find myself wondering -- as careful as I am about what I eat, is it possible that I had some on-going gluten exposure during that period of time?  At this point, I cannot separate that period of time from the past specifically enough to know for certain -- but I DO know that I was traveling extensively for work during at least part of that time.

A few days ago, a good friend asked me how I was feeling.  I replied cautiously "okay."  She persisted -- "You sound hoarse.  Are you getting sick?"  I didn't think so, and said as much.  And then the next day, a dear friend told me that I sounded hoarse...which made me stop and think.  I tried listening to myself.  (Have you ever done that?  It is harder than it sounds!)  As hard as it was to listen objectively, carefully to myself, I had to admit that I did (do?) sound a bit hoarse.  And then just today, while on a conference call for work, one of the attorneys I am consulting with asked me if I was getting sick.  Hmmm. Add "hoarse" to the list.

But really -- above and beyond anything I am tired...bone tired.  And yet, some nights, tired as I am, I simply cannot fall asleep.  Am I tired because I am not sleeping well?   Maybe.  But, I really feel like I am just simply tired...like something immeasurable is being taken out of me.

More Than I Bargained For

The other morning, as I sorted through the Ziplock Freezer bag filled with Week 2 doses to find the proper dose for that date, I found myself tiredly thinking -- this is a lot.  It was an unbidden thought, a surprising thought...and I took a minute to acknowledge it.  

As time stilled, I realized, this is what everyone else is thinking, too.

I'm not sure why it mattered to me, but, I suddenly had the feeling that I was the absolute last to have that thought.

If I am honest with myself, the investigational study IS a lot more than I anticipated.  Maybe I just wasn't ready to admit that at first.  That's okay -- healthy, maybe even.

I have gone from feeling good most days -- the kind of good in which one doesn't even stop to think about the fortune of one's good health -- to having a growing list of...complaints.  

And while it is not what I expected, it is okay.

I am acutely aware of others in my life, in my community, facing serious and in some cases life-threatening health issues, and I want to be very careful not to complain too much about my self-inflicted situation.  (For those following along who want the details, the real deal, the update on how I'm feeling, check out TMI...2.)

While how I am feeling is not what I expected, it is okay.  I decided to participate in the investigational study for a number of reasons, and none of those reasons have changed.

That it is not what I expected is, if I think about it, sort of laughable.  And ironic, for if anyone should have known to expect the unexpected in a medical research study, it should have been me.  (For those new to my journey, my daughter was in a clinical trial for her peanut allergy.  While it ultimately freed her and changed her life, her journey was difficult in ways we never imagined.)  

It is also interesting, because in pondering the fact that this is not what I expected I have realized that even though I did not know what to expect, I expected something different than this.  I hoped for "best case" in which eating gluten would be totally fine -- a mere blip in my day, but I was also very much prepared for the "worst case," in which my consumption of gluten would be temporarily (I firmly and truly believed) very, very bad.  

While mentally preparing myself for the "worst case," I envisioned acute gastrointestinal distress shortly after each dose, lasting for four to six hours.  I envisioned then living with that terrible post-major-gastrointestinal-upset depleted feeling until it was just about time to take the next dose -- for the first few days.  I was prepared for the "worst case" to be truly awful, but I also anticipated that it would be over fast each time...

And -- truth be told, I really, truly did not honestly think that *I* would receive the placebo.  (And just to be clear for anyone new to my journey, it wasn't that I think I am special or anything, it was really all about the math.  Our daughter, who was in a clinical trial where 2 of the 9 subjects received placebo, was one of those two.   What would the odds be of ME being one of the 4 subjects of 12 to ALSO receive the placebo?  While I never actually did the math, I still felt it worked in our favor...)


As ridiculous as it sounds, even to me, it never occurred to me that there might be a "middle" road...a road in which I have never once been acutely ill (thankfully, I did not need the change of clothing I packed myself on the day of my gluten challenge), but am instead living daily with the feeling that I have been "glutened" (a term often used by those living with Celiac Disease to describe how they feel after the exposure).  


If I am honest with myself, the investigational study IS a lot more than I anticipated.

And, when the study coordinator asked me to check in with her daily and then gave me her cell number and asked me to call her with any changes in my condition -- even over the weekend -- I knew things weren't going quite as anticipated.

The cluster of symptoms I am experiencing, which remind me so much of how I feel after being exposed to gluten, make it impossible not to wonder, not to ask myself what is happening inside my body.  

A friend, who is also a medical doctor and the mother of a child with food allergies whom I met through Eating Peanut, commented after reading my detailed post about how I was feeling that if it were her (in my shoes), she would be drawing a line in the sand -- a degree of pain or discomfort or some other point at which she would...just stop.  I responded that I did not want to think that way, and I am not thinking that way, but, her comment did prompt me to check in with her about the bigger picture, to which she responded "If I were worried that you were in serious danger you didn't know about, I'd definitely feel obligated to tell you."

I was never really concerned about that, but that is a nice thing to hold on to.

I Do Not Believe in Medical Coincidences

"Inform study personnel about any
symptoms, changes in medications, doctor's or nurse's appointments,
or hospital admissions that you may have had."

I remember reading that line in the investigational study protocol.

I remember thinking -- No problem.  I'm healthy.

And yet, today, as I was talking with the study coordinator, who is a research nurse -- on the Week 1 call as scheduled, I was sitting on the sofa, eyeing my very newly boot-clad foot. 

We reviewed the symptoms I have been experiencing since my gluten challenge last Tuesday.  

I happily reported that the headache that started while in the post-consumption observation window of my gluten challenge, that hung on, clinging to me for days had finally gone away.  

And then I had to share the details of what has been going on with my gastrointestinal system.  I told of the bloated, full feeling, the gas, the cramping, the queasiness that sometimes rises to the level of nausea (but not yet, thankfully, vomit).  I talked about not really feeling hungry, my struggle to eat, how quickly I feel full.  I shared that, thanks to many trips to the bathroom today, I have been feeling a little less full.

I explained that while all of my symptoms are the types of symptoms I have experienced after having a suspected exposure to gluten, none of them are as bad as they have been in the past.  I haven't been (thankfully) violently ill.  I haven't, as one friend calls them, had a "potty emergency."  I tried to explain, saying that it was like I am having a low-level, longer-duration reaction.

I told the study coordinator that I have had some hot flashes, some moments of light-headedness, a few instances where the edges of my vision go sort of...gray.

I added, almost as an afterthought, that I am very tired these days.

I had this feeling that while the study coordinator was carefully recording all that I was reporting, she wasn't terribly surprised.  It wasn't that she wasn't interested -- there was just something about how she sounded that made me think she wasn't particularly surprised by any of what I had to say.

As I got toward the bottom of my list of symptoms, I hurried to assure the study coordinator that as bad as it all might sound, I am fine.  She said something about how no one wants me to be miserable.  I assured her that while I do not feel good, I am not miserable.  I explained that I actually thought if it was bad, it would be much, much worse.  She laughed -- apparently she'd heard that from other study subjects, too.  I reminded her that I am very committed to the investigative study, and that I want to see it through, despite the symptoms I reported (the symptoms that ended up feeling more like complaints).

If I thought it was uncomfortable to write about my symptoms, this -- having to talk about my symptoms in detail -- was much, much more uncomfortable.

The study coordinator -- I think recognizing my discomfort -- thanked me repeatedly for my detailed reporting of symptoms and very clear descriptions.  She called me the "ideal" study candidate.  She then shared with me that several study subjects have reported very similar symptoms.  Ah.

That gave me pause.

Should I even know that?

And what did that mean?  

Does the fact that I am clustered with others who are having symptoms mean I am in the control group?

What are the odds of THAT happening?

  (For those new to our story, my daughter was in a Phase 1 Clinical Trial for her peanut allergy called PRROTECT.  There were 9 subjects at her study site and 2 received placebo.  She was one of them.  While in the end, all is good, we learned an awful lot about anaphylaxis along the way...)

As I was wrapping up my litany of symptoms, I eyed the (new) boot.

I took a deep breath.
I knew I needed to "report" it, but it felt sort of ridiculous.


[The Backstory]
At some point relatively early yesterday morning, I realized that my left foot/ankle hurt.  I was busy getting my oldest daughter out the door to skate before school, then busy with our younger children and all that is entailed in getting them ready for school.  It wasn't until everyone was where they needed to be that I realized that my foot/ankle really hurt.  

I wasn't terribly concerned, because I hadn't done anything to my foot, so how bad could it be, really?

I sat down to look at my foot/ankle and wondered if it was maybe slightly swollen.  I wasn't sure.  I stretched it a bit, rolling it around until it started to hurt more.  I was hoping that whatever it was would just resolve, but by mid-afternoon, my foot was throbbing, and definitely swollen.  I delegated driving.  I put my foot up.  I fell asleep.  I iced my foot/ankle.  I directed my kids through homework and dinner from the sofa.  I thought about Advil, but I knew I couldn't take any medications without consulting with the study coordinator, so I held off.  I sort of wanted to keep tabs on how it was feeling anyhow.

I kept my foot elevated and iced it off and on all night long.  When I went to bed, I was vaguely aware that it was throbbing, but I was so tired that I fell asleep anyhow.

This morning, when I got up, my foot/ankle was decidedly more swollen -- and more painful.  With a trip for work looming later in the week, I felt like I might have to actually do something about it.  I called a dear friend who is expert in matters of orthopedics and she confirmed what I was already thinking, that I should go get it seen.  

(I kept thinking -- but I didn't DO anything to my foot.)

So I took myself to IBJI Ortho Access (LOVE the concept) and within a relatively short period of time, my foot/ankle had been evaluated and x-rayed.  After poking around at the puffy joint on my ankle bone, the doctor asked me if I have gout.  I gave him a puzzled look and said something to the effect of not thinking I did.  He responded that I would definitely know if I did.  

As we reviewed my medical history and he inquired about current medications, I found myself looking down self-consciously.  I had to tell him that I didn't know what my current medications are.  I explained the investigational study, and told the doctor that since it was a double-blind study, while I was taking a daily dose of the "study drug," I did not know if what I was taking was a placebo or Montelukast.

The doctor sat down, and I could tell he was suddenly just a bit more interested in things.  He wanted to know about the investigational study, the gluten I am eating, the common uses of Montelukast.  Then he asked how much longer the investigative study would go.  He gave me a look when I said quietly "seven weeks."  (Actually, I'm at 6 weeks and 5 days, for those keeping track.)  

He said that the medication he wanted to prescribe would likely disqualify me from the study.  He went on to explain that he was going to prescribe a 6-day Medrol Dosepack (basically, a LOT of prednisone).  He said it would reduce inflammation, probably decrease pain associated with swelling and allow for better healing.  I looked steadily at him and asked, "What if I don't want to take it?"  It wasn't a challenge -- it was a real question.  I explained how invested I am -- at this point -- in the study.  I said things like "upper endoscopy" and "stool sample" at which point he suggested I take the written prescription with me, that I discuss whether or not to take it with the doctor running the investigative study, and that I be sure to take the written prescription with me on my business travel.  Relieved, I agreed to all that.

I have had a few thoughts of my own since I left the orthopedist this morning.  I am remembering the moment of unsteadiness I had yesterday morning as I got out of bed.  It passed quickly, but I have a vague memory of putting my foot down hard, maybe fast, as I waited for my head to clear, for the room to steady.  It wasn't a big deal at the time, and it didn't hurt.  But, now that my foot is as it is, and I am reflecting on what might have caused it to be that way, I cannot help but wonder...

A part of me thinks more sophisticated imaging might be in order, but for now, I am going to wait and see.  If there IS a stress fracture, or something else going on, treatment wouldn't be any different than what it is now -- just longer.

[Back to the Study]

As I was feeling ridiculous -- about to report some non-injury injury to my foot/ankle, I received a text from the dear friend who had advised me to get my foot/ankle seen.  She wondered if the inflammation was related to my gluten consumption.

With the study coordinator waiting on the other end of the line, I laughed one of those sort of uncomfortable laughs and said -- "And there's one more thing."  And then, because I still felt sort of ridiculous, I added, "My friend thinks it might be related to the fact that I am eating gluten."  (Like I needed to somehow justify what I was about to say...)

As I filled her in, I could hear her interest growing.  She listened raptly.  She asked several questions.  I concluded by telling her that I did not want to take the prednisone if doing so would disqualify me from the investigative study.  I have too much invested at this point to do that.  

The study coordinator was quiet.

I wished I could hear her thinking.

When she spoke, she was clearly choosing her words carefully.  I understood why, as she explained to me that several other subjects had reports of significant unexplained swelling and/or joint pain.

Ah.

So I am not alone.

That gave me pause.

Should I even know that?

And what did that mean?  

Does the fact that I am clustered with others who are having symptoms mean I am in the control group?

What are the odds of THAT happening?

I do not believe in medical coincidences.

I wonder what this means?

For now, I will wear that boot.  

I will rest.  I have cancelled my walking dates.  I will not be issuing any FitBit challenges any time soon.  I have no idea when my Pokemon Go! eggs will hatch.  I will rest.  I will keep my foot elevated.  I will do all that I can to allow whatever is going on to heal without further intervention.

Late this afternoon, the study coordinator texted me.  "You can take some ibuprofen.  That should alleviate some of the swelling."  It has also, thankfully, alleviated some of the pain.

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.

"So...How Do You Feel?"

In the last week, while I have been steadily working my way through my daily doses of gluten, slowly nearly emptying the first Ziplock freezer bag filled with Week 1 doses (it will never be empty, as I am returning the cling wrap from each individual dose to each individual Ziplock baggie and then storing them in the Week 1 freezer bag), I have had countless people -- friends, family members, acquaintances, even a few folks who somehow have found their way to my blog on Facebook -- ask me in one way or another how I am feeling.

And unlike the casual "Hi!  How are you's?" that are bantered back and forth while people are out and about, at the grocery store, Starbucks or otherwise in passing, at this point in my life, I think people really, truly want to know how I am feeling.

And...I'm finding it hard to really, truly answer them.

The biggest issue?
Well...maybe there are TWO biggest issues.


The first issue:  I grew up with two very stoic parents -- a mother who gritted her teeth and withstood endless headaches while an elusive brain tumor bore through her brain and a father whom I only saw cry only once -- the night he told me and my sister that our young mother was unlikely to ever come home to us.

I grew up to be stoic, like my parents.
I'm not used to giving anything other than a simple "I'm fine," or "I'm OK."  

And so, it is hard, so hard to say anything other than "I'm good!"

The second issue:  I don't want to complain.
After all, I signed up for this.
One might even say I asked for this -- whatever this is.
  (And...this -- whatever this is, is temporary.)

And maybe there is a third issue:  
I don't want anyone to worry about me,
  and I most certainly do not want anyone to worry that I am going to quit this investigational study.
For while I don't feel good, I'm...good.  I'm fine enough to see this through.  I'm OK.


And so, I am trying to provide real answers...but struggling.

For I know that these people who are asking really do want to know how I am feeling.  Some of them want to know because they genuinely care about me, and some of them want to know because they are hugely appreciative of what I am doing and hope something incredible comes from it because someone they love dearly is living with Celiac Disease.  (Some of them are parents, who have a hard time envisioning their children's future lives.  I can relate to this, first-hand.)  And...some of them, I think...are simply interested in the science of it all.  Whatever their reason is, everyone who asks deserves an honest, open, brave answer (even if that does mean talking about digestive issues -- like poop and farts and burps...)

And yet, I ask myself...does anyone really want to hear the answer?

For the truth of the matter is -- I don't really feel very good.  I'm not terribly sick (thankfully -- in some ways, it is nothing like I feared it might be, but in other ways, it is also harder than I thought it might really be), but I also feel vaguely (or more, at times) and persistently...not good.

But really, a laundry list of all that is not right, not perfect in my body?
  Really?
Does anyone really want all that?
  I don't know.
  I don't think so.
[Especially when I take into consideration the fact that most of it (well, a lot of it, at least), has to do with my digestive system...and I am reluctant to go into too much detail about all that.]

So, after pondering this dilemma for a few days now, and struggling to write a really honest blog post, I have decided two blog posts might be the way to go -- this, for those weak of stomach or who just want an overview, and the one to follow, which will be entitled "TMI...?"  (Recommended only for those who want the details, the real deal.)  

(And while I'm tempted to share my thoughts on whether or not I am receiving the drug being studied herein, I think it would be more appropriate for me to save that revelation for after I've shared the real deal.)

Got Gluten?

Yes, I do.

Lots, and lots and lots of gluten.
More gluten, in fact, that anyone with Celiac Disease should have.

FOUR weeks worth of gluten doses.

I couldn't believe the size of the insulated bag the study nurse gave me -- filled literally to the brim with individually packaged doses of gluten.  Each dose was individually weighed, wrapped in cling wrap and then placed in a small Ziplock bag.  Every dosing packets is individually labeled with the date it is to be consumed.  There are four large Ziplock freezer bags labeled Week 1, Week 2, Week 3 and Week 4.  Each Ziplock freezer bag contains seven dosing packets.

There was a detailed instruction sheet in the bag labeled Week 1.

The part I found most interesting about the instructions were the ones around how to handle the empty Ziplock baggies.  Each (theoretically empty) dosing packet Ziplock bag is to be stored within the bag for the study week in which it was consumed.  All four (theoretically empty) Ziplock freezer bags are to be returned in the insulated bag I received them in when I return for the Week 4 visit. 

On the advice of the doctor running the study (in response to the symptoms I had the day of the Gluten Challenge), I split up my first home dose.  I took the study drug in the morning after all of my kids were at school.  About ten minutes later, I toasted one of the pieces of bread (in the toaster everyone in the family uses but me -- I have one that is labeled Gluten Free) and buttered it (liberally, it would appear), and then ate it.

I had originally planned to eat the remaining full piece of bread in the afternoon and the last part -- the not-quite-half a slice piece later, but in the afternoon as I was preparing to toast the second full slice of bread, I decided I would prefer to just get the whole dose for the day behind me, so I popped both pieces into the family toaster and ate them.

As I prepared to take the second half of my first home dose, I paused, wondering what to do with the plastic cling wrap that each dose is wrapped in.  Throw it away?  Maybe.  But maybe not.  After hesitating for a minute, I wadded it up and tucked it back inside the bag.

Later in the day, as my girls rummaged through the freezer looking for popsicles behind my four big Ziplock freezer bags of bread, my older daughter paused for a minute to check out one of the bags.

I found myself explaining to my girls that I am required to return the empty dosing packet bags within each Ziplock freezer bag.  My older daughter looked at me incredulously.

Why?

Well, I explained -- I think it has to do with compliance.  They want me to bring back every bag -- those that are empty and if for some reason I am unable to take a dose on a certain day, they want me to bring that back, too.

She gave me a look.

(I knew what she was thinking.)

Just because the bag is empty doesn't mean the gluteny bread within it was consumed.  

She persisted, But Mom -- you don't have to do this, right?  I mean -- if you want to quit, you can at any time, right?

Right.

But I won't.

And she knows that.

I just hope she knows she is the reason why.