Wednesday, 7 May 2014

The Upside? of being Coeliac

So often I write about how easy it is to transform ingredients into delicious gluten free yummies and that it is not a difficult process. And indeed it's not.  It requires some adjustment and some imagination and for me, it involves a lot of love.  Love for my daughter who is Coeliac. Love for my daughter that was terribly sick as a young child because of Coeliac Disease.

But I'm not going to sit here and lie and tell you that being Coeliac is a breeze.  It's not.  I am an upbeat person 95% of the time.  I am. But today.. today I am going to shed some light on the downside of being Coeliac and be brutally honest.  Lets get down to brass tacks.  Coeliac Disease blows.

It has taken away spontaneity of going out.
It has taken away vast menu options.
It is often ostracizing.
Planning and research and continual questioning has become the norm.
The fact that gluten free has become trendy irritates me at times when people assume you're eating gluten free as a lifestyle choice rather than a medical necessity.  Just how Coeliac are you??  Kind of like being a little bit pregnant I suspect.

We often take our own food to friends and family because it's easier and to be honest I feel safer.  If they insist on making gluten free, I worry about the understanding of gluten free ingredients and cross contamination.  I have the added stress about the risk of offending by querying ingredients and food preparation.  I worry about banging on about it.  I do it anyway.  

I put together a birthday party box including cake & a take-home lolly bag for all birthday parties Abbey attends.  We don't go on overseas holidays.  Actually holidays anywhere are a rarity.
The stress of seeking out GF options for Abbey in a different country, disguised in a different cuisine gives me heart palpitations.  We'll wait till she's older and a little more enthusiastic to try different countries fare.  Imagine if she was glutened overseas.  That is my worst nightmare.  I prefer the safety of our own surrounds for the time being. 

But this impacts on not just Abb & I but our whole family.  The other 3 in our house are not Coeliac yet they are feeling the impact of these restrictions.. and this weighs heavily on me.

I have even had comments in the past from my own family who know I am Coeliac (asymptomatic) which are completely frustrating.  Comments like "oh but you can have just a little with no problems Tara - you're not like Abbey"  Aarrgghh.  "Sure.. I like to live on the edge - I guess if I can't SEE the damage being done to my insides.. it's not really happening right.."

Whilst both of us have biopsy-proven Coeliac Disease, Abbey reacts much differently to I.
Within a short time of  ingesting gluten, Abbey is extremely unwell.

The last time this happened, it was an innocent transaction of a cupcake between friends.
The cupcake was gluten free, it was just that it was innocently placed in a friend's lunchbox containing crumbs.. then handed back.  A lunchbox that contained crumbs of the gluten variety. Enough said.  There was no evil agenda or malice.
This was a regular school day that suddenly turned into a very bad and a very frightening situation. 

No-one knew the extent of what was about to happen including myself.
Those around Abbey soon realised that she had become suddenly unwell.
She was sitting in the corner of the classroom with her head in a bucket and looking pretty dreadful when I arrived.  She had already vomited so much that she had depleted her body of all energy.
I guess most would have assumed that once I left the schoolyard, I had just taken her home and comforted her until her body rid itself of the offender but sadly that was not the case.  She collapsed a couple of times before I even reached the car.  Panicking, I quickly had to make a decision - to drive to hospital or go home & call an ambulance? (home being only 10 minutes away).  I chose to go home.  My husband was away for work,  Abbey's younger brother was with us and her older brother was on his way home from school totally oblivious to what was going on.  She was becoming non-responsive and I was getting a little frantic.

I could not fault the response time for the ambulance - thank God for the Ambo's.  An assessment was done and the decision to take her to hospital was made.  The officers told me they had never really seen a reaction to gluten quite like Abbey's before.

I could breathe a little easier in the ambulance.  Although there's no quick fix, no EpiPen for a gluten episode, I was with the right people and if she got to the point of severe dehydration, they would know what to do with drips etc so until then, we just had to ride it out.  By the time we reached the children's hospital she was over the worst of it but the ambulance ride saw her being sick a few more times en route.  She managed to strip her oesophageal lining which was a little disconcerting but the ambulance officer explained it was from the severity of vomiting episodes and would settle.

The emergency department was operating at full capacity at that time of the evening, especially for a Friday so, by the time a doctor got around to us and Abbey had slept a while, she had all but recovered.  And that's the way it goes you know.  When the doctor finally got to her and she was looking pretty OK again you can't help but think that they are thinking "um..why are you here.."

And then we were sent on our way like nothing had even happened.  That's the way it goes with Coeliac Disease.  Within 24 hours she was back to her rosy cheeked, chatty self again.  What a ride.

So whilst it's not ideal, Abbey & I have the support of our immediate family and countless others who find themselves on the same Coeliac scenic cruise.

I've said it before and I'll say it again - there are far worse things it's true but it's cathartic to vent.

It pays to have a healthy sense of humour and an endless supply of laundry to keep me otherwise occupied.  I'd rather have an overseas holiday of course.. but 'til then I'll keep cooking up a storm  Smiley

Digital Parents Blog Carnival

No comments:

Post a comment