On a cold dark stormy night...

Weeeeellll... okay, it  actually didn't start out on one of those but I have just always loved that opening line!  Wow... after re-reading the below post I may have gone on a bit but it is the tale of the beginning so bear with me... and get a drink!


Here is where we started...  In Mexico.  Yep.  Mexico and a really bad case of Giardia.  Mine.  While having a lovely time down there with our dearest friends I became a smuggler.  A smuggler of hidden travelers.  Damn Border Patrol doesn't seem to care a bit about those though!  Nope.  Just a 'free to cross ma'am! Welcome home!!'  At least they could have shouted a hearty 'shame about those pesky intestinal critters you're harboring!'  Nada.


Anyway... In 2006,  I was finally (a miserable 3 weeks later and a glorious 18 lbs lighter)  diagnosed with Giardia, a nasty intestinal bug common to south of the border travelers.  During one of the routine tests, along with Giardia, I showed positive for Celiac Disease.  What? What the hell is that?  I was referred to a GI doctor who's appointment I cancelled twice and then made the stupid decision to just ignore the diagnosis, and go about living our Foodie lifestyle that we had been thoroughly enjoying for years.   My rationale?  I wasn't going to change my way of life or my family's just so I didn't get bloated and feel like my jeans had shrunk 2 sizes while i was sitting in the restaurant having dinner.  'Craziness' I said.  Not giving up my pasta.  My bread? no way!  NEVER did I hear how dangerous it was to think like this. NEVER!  Not a mention of the possible dangers of future stomach cancer, diabetes, thyroid disease, stunted growth, brittle bones to the point of early on-set osteoporosis... all possible if Celiacs is left 'untreated'.  Which of course means to completely STOP eating ANY and ALL gluten... for the rest of your life.   I had always had a 'funny stomach' and always lived like that.  No big deal.  


Jump ahead 5 years (March, 2011) to when I was sitting having margaritas one night with some friends and one of the women mentioned that another's 5 year old was just diagnosed with Celiacs.  Now my dear friend 'A' (haven't actually asked her yet if I can use her name so she will be just 'A' until she gives me the nod) looked across her salted margarita (me? I'm a NO-salt kinda drinker by the way) at me and said 'you know it's hereditary right?'  Ummmmm... 'no.'  Again... no doctor EVER told me this.  And we have a good doctor!


I had an honest to god Oprah moment and called the good doctor the next day and asked him to see Libby, then 8.  I said I wanted her checked for Celiacs.  A simple blood test.  Although Libby would NOT agree with that assessment.  He asked why.  See... I told you he is that good!  I said because for all of that year (3rd grade) and possibly the year prior, she has been miserable.  I was like Oprah on crack.  So many light bulbs were going off I thought the paparazzi had entered the room.  All of her complaints of tummy aches, constipation, diarrhea (and both at the same time!),  feelings of nausea (thank god for spell check), the beginnings of a cute little belly on her always slight frame, being afraid of (SO sorry my dearest) leaking bowels, the odd inability to focus at school, her being the next to shortest kid in class and generally just not feeling well, were ALL coming back to scream at me "BAD mommy. REALLY BAD mommy!!"  So he took the blood but assured me it was doubtful she had Celiacs.  A week later he wasn't so smug (actually he wasn't smug at all-he's just too handsome to be anything other than handsome, oh and a really good doctor) and told me she was indeed positive for Celiac Disease.  Of course I knew it.  I knew she had it from that first sip of my margarita.  Mommy intuition maybe but I knew what the outcome would be.  On the scale of 0-30 (30 being high) her count was a whopping 140!  Our girl was sick.  Seriously sick. 


I was devastated.  I sobbed.  My husband cried.  My mom and sister cursed and wept.  I sobbed some more.  I was scared.  I felt angry.  SO very angry.  Still am.  My friends expressed sympathy.  The good doctor expressed genuine surprise and amazing sympathy and compassion... at least i think that's what he was saying but through my racking sobs it's hard to be exact.  


But I couldn't bring myself to tell my sweet baby girl that it came back positive.  I just couldn't.  She knew Celiacs was what we were looking for, but hoping like hell it wasn't.  I had of course, during that very long week, Googled my arse off (my husband is from Wales but doesn't actually pronounce it as arse but it seems so much more 'friendly' doesn't it?) with searches on Celiacs, poured over every written word, and in-between-the-lines, like an über sleuth and so I was REALLY REALLY sure we didn't want a positive result.  So we kept it to ourselves for nearly 3 weeks. My husband (henceforth referred to as Hugh)  knew that I needed to be able to deal with it myself before being able to tell Libby, without completely falling apart before her lovely and trusting blue eyes. But how to positively convey to her the truth?  The truth being that her life was about to change drastically and a lifetime of 'going without' was to be her future.   We are such a food loving, cooking, restauranting (no love from spell ck on that one!)  family that I couldn't imagine how to tell her that that was over.  Remember now, this was in the beginning stages and my information has since grown and our world has widened since that miserable day.  A longer blog would ensue if I were to  mention the 'disease' aspect of this damn disease! Another day, another blog.   Hey, I like that... but probably not an original.


I wanted desperately to be able to tell her on my own terms and with a positive spin.  She is one of the most intuitive people I know (especially where I am concerned) and she kept suspiciously asking if Dr. M had called.  I was evasive at best but then one day she and I were walking alone in the park, after dropping my younger daughter Eleri, at ballet and I told her.  Just said it.  My voice got a little shaky and she put her sweet, soft hand on my arm, stopped me in my tracks, looked up right into my eyes and said "It's okay Mommy.  I'm going to be okay.  Don't cry."  I was a sobbing mess but was the proudest mommy (NOT to be confused with DMB's Proudest Monkey) on the planet at that very moment.  A referral to Children's Hospital came next and a fortuitous placement under the excellent care of Dr. Kimberly Newton, head of the Pediatric Celiac clinic at Rady's Children's hospital.  She did the required intestinal biopsy and without a doubt, confirmed that Libby had full blown Celiac Disease.   


Oh yeah, and I don't actually have Celiacs.  No siree.    False positive in 2006.  That happens.  Go on about your business.  New blood test and a biopsy to boot, you know~just to be sure... nope, we're sure.  Are you people kidding me?  She has it but I don't?!  I have never wanted to have anything more in my entire life than to have Celiacs so that Libby wouldn't be alone in this.  Alone with this.  Alone.  I actually contemplated telling  her that my results came back positive as well.  Actually, I can't swear I didn't tell her that before I snapped out of it and realized what a disservice I was doing to her, and to our relationship.  I wanted to walk this crappy road with her.  I wanted it to be our thing, together.  But it is hers.  Diagnosed in March, 2011~gluten free since May, 2011.  And better.  Not completely, yet, but certainly much better.  And me?  Just a 'funny tummy' apparently.


And this is what began our new life as a gluten free family .  So...


Another day, another blog!


~k