You Have Celiac Disease Part I

I've got two diagnosed autoimmune disorders.  I've just had surgery for one and I am about to move back to West Africa.  Now to get my third diagnosis . . .

I can feel myself start to wake up.  I have that slow feeling that happens with coming out of full sedation.  Sounds are far off and my sight is just coming into focus.  I look down and remember the IV in my hand.  I've had a very rough couple of months leading up to this & another needle pushed through my skin and into my vein sets off alarm bells in my brain.  Then I see my husband sitting on a chair beside the bed, smiling at me.  I am immediately more calm knowing he is there.

"How long have you been there?"

"About a half hour," he says.

Then the nurse walks up.  She's really kind, really careful.  She gets me some water & tells us the doctor is coming to tell us about the results of my endoscopy.  I say thank you and hold my husband's hand.  We talk quietly for a few minutes.  He jokes with me.

The doctor walks up and in four words, less than 10 seconds, she helps me understand the last 10 years of my life.

"You have Celiac Disease."

I start to cry . . . with relief.  She goes on to tell us that as soon as she had begun the procedure she saw the evidence.  She uses the words "scaling" and tells us the damage is "extensive."  Then she sends us home, telling me to eat a gluten-free diet for the rest of my life.  This is a huge problem with Celiac diagnosis & I would figure that out in the next few months, but for right now I am deliriously happy.  I am not losing my mind.  I am not making this up.  Something really was wrong.  Very wrong.

I had laparoscopic surgery for endometriosis (& chronic appendictis) in March of 2010 in the United States.  By May 1st, 2010 we were standing on Africa soil again.  My husband had gotten a new post in Sierra Leone.  In hindsight, I should have taken a little more time to heal.  A little more time to adjust all the stress meters (stress is very bad for autoimmunity).  Ah, hindsight.

We got right down to business adjusting to our new locale.  In many ways, I felt better than ever.  The surgery had relieved so much pain for me.  Less pain meant I had more energy to devote to things besides pain management.  But something was still not right.  During our first week in Sierra Leone, I noticed tummy issues popping up.  They were much like the ones I'd had after pregnancy & experienced off & on since then.  I lived in a developing country, so I naturally thought it was just the name of the game & pushed it aside.

By December, I was starting to notice that something was wrong with me emotionally.  I seemed to be having a harder & harder time with emotions like anger & frustration.  I was crying . . . alot.  And I was anxious.  I was never a totally carefree type, but my cares & worries were heading into new territory.  Again, I chalked this up to our big moves in less than two years, recent surgery, cultural adjustments, etc.  I dismissed myself.

By the beginning of 2011, I had other problems.  I had begun to lose hair.  It wasn't a major concern, but I noticed it.  I talked to friends.  They all had ideas on why it could happen more in Africa.  Then I started to lose weight.  Again, it wasn't very noticeable at first.  I had always been thin, but I could feel the change in my clothing, then friends started to comment.  Then I started to get very tired.  I had been dealing with this slow winding down of my energy for years, but now it happened at an alarming rate.  I had moments where I was almost incapable of keeping my head up . . . inappropriate moments.  Like an hour after getting out of bed.  Mild depression set in.

I wondered often to myself when I would get my "self" back.  I wrote my best friend emails saying I was missing my "self."  I still did not understand that my "self" was being swallowed from the inside out by another autoimmune disease.  It would still be almost another year before I would hear those words, "You have Celiac Disease." 

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