Monday, March 7, 2011

Celiac - the bain of my existence

I know that is a strong title - Bain of my existence - however this is exactly how I feel when I have a Celiac attack!
I am not sure if it’s because I am so cautious in what I eat and how my food is prepared that causes the heightened frustration when I have an attack or if I would feel the same exact way no matter how much I cared about staying well.  I just know that when I have an attack it is like Hercules’ Achilles heel - it drops me in an instant.
I am very particular in where I go to eat out (when I do eat out - as it’s safer to just fix it myself) and make sure the staff is highly trained.  One of my favorite places is PF Chang’s and I rank them as #1 in my book and have never worried about going there.  Well that is about to change folks!  First let me put in my disclaimer that I still think they are one of the best trained restaurants in Celiac and do not lay blame on the chain at all.  In this case I think I caught a waiter on an off day - a day where maybe he couldn’t look outside himself to realize the pain and suffering he was about to cause me.
I ordered GF lettuce wraps - my favorite- and explained I needed Gluten Free everything.  I saw the soy sauce come out separate in the little red dish so I could quickly identify it and then made my first mistake - when he brought the lettuce wraps I forgot to check the plate.  See PF Chang’s does a wonderful job of making sure your gluten free food is on a different plate so that you can tell.  Anyhow I proceeded to share this yummy dish with a friend while we talked.  Then another friend joined us and the waiter came by and said to her “Do you have any food allergies - oh never mind I see you don’t as you are eating that” and pointed to MY supposed gluten free lettuce wraps.  Now something triggered in my head to stop and figure this out - but we were in the middle of talking so I let it slide and didn’t pay the attention to it I should have.
We continued to talk and eat our main course - which I DID remember to check the plate on (and it was fine).  However as I was eating I started to feel ill.  Not wanting to make a big deal of it I wrapped up our luncheon with a smile.  As I walked out I thought to myself “Oh no!”.  As I drove home and had to stop several times I thought “Oh come on - not this!”. When I got home and not only was sick as a dog, but drained, freezing and extremely exhausted I knew what had happened.  I had been cross contaminated and those waiter’s words came back to me loud and clear.  I should have asked then - not that it would have mattered I had already eaten it - but maybe I could have helped teach him how serious this mistake was.
Now I know this sounds dramatic to say this is the bain of my existence - however here’s what happens next.  I spend all night sick, drained and feel like death has come knocking on my door.  Then I spend a horrible night of not sleeping because the pain in my stomach hurts so bad.  Then I wake up in the morning - starving as I’ve just spent at least the last 12 hours ill, purging everything I own and not eating anything to replenish it.  However there is a catch - I can’t eat - trust me I tried and it starts the cycle all over again!  It takes days for my stomach to heal enough to put real food on it - so for the next few days I will be eating broth and mashed potatoes (bland by the way).  All the while I will experience hunger like I haven’t eaten in weeks but no way to satisfy it (it’s like my body is trying to store up for all that it has lost).  I will lose weight rapidly (I am already down 6 lbs in 2 days) and feel like someone has zapped all energy from my body.  It is difficult to follow conversations or even think and I’ve watched every stupid sitcom on tv I can stand. I will spend days recouping from this and not gain a thing from the experience! My family will suffer with worry and being tied to the house due to my disease. None of us are having any fun at this point!
This disease is not a food allergy - it’s a serious DISEASE people.  Not only do I suffer from the cross contamination but now I have reset my “no sick days” back to zero.  The goal is five years of not being sick - that is how you fully heal and lower my risk of some serious diseases (like intestinal cancer).  On top of all of this - my immune system goes on vacation when I get an attack - leaving me open to being sick - which I am today.  I have some cold/flu thing going on and it’s turning into an infection. Of course my body is busy fighting the celiac attack and has no extra energy for this new development.
Celiac and gluten free are becoming common words - but what isn’t common knowledge is this is not just some food allergy that gives you hives. I can’t even count how many people say “Oh you have celiac - that’s an allergy right” or something similar to this.  This is a serious autoimmune disease that does some serious damage to celiac patients.  So for those of you who deal in food and offer gluten free - please remember your mistakes can cause us much more than an upset stomach.  For those of you who are celiacs - hang in there - be vigilant and know that you are not alone in this!
Me - well I will keep trudging forward and be more cautious in my decisions to eat out and have learned to never let my guard down - no matter how trained they are.  Lesson learned!

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