Missed Diagnosis

Thirty-five years and not a single doctor could put their finger on it.  One too many surgeries to count, two too many symptoms, one hundred too many diagnoses - I never heard the words Celiac.

After years of suffering and getting nowhere - except another prescription or another *ologist*.... I took matters into my own hands.  I became a webologist.  I know - the WORST place to go when you feel like you are dying - the internet!  I had no choice.  There had to be a logical explanation why someone my age, in good shape and following a healthy lifestyle, could be this damn sick all the time.

After a 5 month period of suffering and the beginning of what I thought was *the end* of my time here on Earth, I was recommended to a fabulous G.I. doctor and made an appointment.  I calmly sat down and made a time line of what I had been through, diagnosed with and had surgically removed.  I brought it to my appointment and handed it to the doctor.  Shortly after turning over my medical diary to the doctor I had met 2 minutes prior, I promptly informed him of what I thought my diagnosis was.  I then broke down sobbing.  A blithering idiot of mass proportions.  Hell - I thought I was dying - what was a little sobbing at that point?!  I also advised the doctor not to give me any pills or creams - just answers.  He politely chuckled and proceeded to schedule me for every test known to man.  He assured me he would eliminate everything until he found what was wrong - or until he could find nothing at all.  Although I had already felt like I lost my mind, I was sure he was going to find something.  I thought it was a toss up between colon cancer or Celiac disease.  Hey - it had been a rough few months... like I said, I thought I was dying.  Little did I know - I was.

After what seemed like 50 plus tests, I went in for an upper and lower G.I. series.  First result - NO CANCER!  AMEN!  Second result - severe villous atrophy (SVA) consistent with Celiac Sprue (and a whole mess of other medical terminology).  SHIT.  At least I had my answer - finally.

After several hours of deciding whether or not to hunt down every last doctor who told me I was over-reacting, or gave me some pills, or didn't listen when I told them something had to be causing all of this crap I was going through... I got good and angry.  I screamed, I cried, I had a pity party - I panicked.  Everything I ever knew - was about to change.  

I immediately began gluten free living.  I spent 3-4 (anxiety filled) hours (each trip) in the grocery store - for at least the first 3 months of this journey.  I read labels, called 800 numbers and researched the hell out of websites on my iPhone.  I joined a *support* group in my town (by the way - TN is probably in the top 10 worst places to have to live with this disease) and it was a joke.  I was defeated.  I trudged on... I researched my disease, educated myself on gluten, hidden gluten, and and pretty much read everything and anything I could - until my eyes crossed and I had a safe handle on how to live gluten free.  I also conquered grocery store and gluten free shopping!  That was a MAJOR accomplishment!

One year later, at my daughter's school physical, I discussed my concerns with her pediatrician about my disease being genetic and my observances of red flags with her.  I was told to go gluten free with her - or have her tested.  I had her tested.  Much to my expectations, she had Celiac disease.  My only consolation was that she found out at 7 and not 35 (like me).  She now walks this journey with me.  I can remember the 4th day of her being gluten free.  Gabby: "Mommy, my tummy doesn't hurt when I eat anymore".  Me: "Why didn't you tell me it ever did hurt"?  Gabby: "Because I didn't know it wasn't supposed to feel that way..."  :(  What a bittersweet moment to learn that your daughter will now (hopefully) feel healthy and pain free... and realizing just how much she had been suffering.   

So here we both are, two years later for me and one year later for her.  I gained 25 pounds from the 8.5 months of precious steroids I took to repair my stomach lining.  I am in the middle of a diet to get rid of that unwanted weight (which is stubborn as hell and did not want to come off).  I am winning my battle and have lost almost 18 of the 25 lbs.!  Yeah ME!  In doing this diet, I am eating only whole foods.  Nothing processed, nothing manufactured, nothing that bothers me.  I have now realized that I feel better than I have (even with the restricted amount of food I am eating) in as long as I can remember.  WOW!  REVELATION - I now need to eliminate processed foods - my body does not like or tolerate it at all!!

So here I begin the second part of this crazy gluten free journey.  I have equipped my kitchen with the most user friendly and resourceful gadgets and have feverishly been baking, creating and concocting!  What an exciting time.  I feel so empowered and revitalized!  I just need to finish this crazy diet so I can finally taste something I had made!

If I can help one person get started on this overwhelming and terrifying journey - it will be worth all of the stress and trauma I endured, trying to figure this out on my own.