Chronic Abdominal Pain...

and bloating, 
and diarrhea 
and constipation...
  (yes, oddly enough...both)


As much as I wish I had sailed through the investigational study without a single complaint, that is not the case.  While I won't know for some time whether or not I was one of the four controls in the 12-subject investigational study, I feel I can say with confidence that if I was not one of the controls in the study, this particular protocol (Montelukast) did not work for me.


I consumed my last dose of gluten this morning, making today the 42nd straight day I have consciously consumed gluten after having seriously and purposefully avoided gluten for 1964 days (I was diagnosed with Celiac Disease on April 27, 2011, and have been gluten free ever since).

Late last week, I suddenly realized -- while fighting nausea and breathing deeply through waves of dizziness and holding tightly to the railing while descending stairs as the edges of my vision grayed and tiny pinpricks of light danced in front of me -- that I feel very much like I did before I was diagnosed with Celiac Disease.  

The realization struck me hard, like a run-on train.

Incredibly, while I have known (really, since the beginning), that I haven't felt well, the symptoms and complaints have slowly compiled until -- staggeringly -- if I can trust my memory, I feel at least nearly as unwell as I did before I was diagnosed with Celiac Disease...if not more unwell.

...if not more unwell.

Because, on top of the symptoms I once had -- including extreme fatigue, to the point that I could not climb a flight of stairs without pausing, without gasping for breath -- I now have new symptoms -- gastrointestinal symptoms that threaten to rule my life.


I was feeling like it was hard to explain how I feel until I realized earlier today that I know exactly how to explain how I feel.  Much as there is a very specific pre-vomit pooling of saliva that occurs under one's tongue, there is also a very specific post-stomach flu shakiness and unsteadiness -- that wrung-out feeling -- that hangs on until one is properly rehydrated and until one has eaten something solid.  That is how I feel.  But, that post-stomach-flu wrung-out feeling isn't a short-lived -- just until I drink and eat and maybe sleep a bit -- feeling...it is nearly constant...hanging on, ebbing and flowing, but always there.

And really, it makes sense.  

These days, life with my stomach goes something like this:

My stomach hurts.

I am getting (or have) a headache.

I might be hungry -- but nothing sounds good.  Nothing is appealing.
  (Just thinking about some foods even makes me nauseous.)

And I know...from previous recent experience...that while I might be both hungry AND experiencing a stomachache...eating is likely to resolve only one of those complaints...while worsening the other.

But I also know that I cannot simply not eat, and so...eventually, carefully, planfully...I eat.  And incredibly, sometimes eating is fine...sometimes I even feel better for a short while...whereas other times, eating results in severe abdominal pain and gastrointestinal distress.  And the worst of it is that I never know what to expect.

I picture the villi lining my small intestines damaged and angry, unable to do the job they are there to do, and I wonder what the doctor will see during my upper endoscopy later this week.  And yet, I think I already know the answer.  I expect she will will tell me that she cannot tell anything without a microscopic examination of the ten biopsies she will take.  It is staggeringly hard to believe that it takes a microscope to see the kind of damage I expect has occurred...and yet, I have traveled this road before.

Fortunately, my last dose of gluten is behind me.  Healing -- while likely indiscernible -- will have begun before my upper endoscopy even takes place.

I'm not done, but the biggest hard part is behind me.

And if I have learned anything?  It is that there is a tremendous need for a cure, a treatment...something.