Thursday, 20 December 2012

A tough lesson

If you're Coeliac - don't be complacent.  EVER.

We recently returned from a family holiday to Margs.  We still love you Margaret River but our trip was sadly marred. You see, my daughter got glutened the second day in..
It was so bad she was hospitalised.  The doctor said she had never seen a case so severe.  Those of you that know us or follow the blog will know that when she was diagnosed, she was classified as severe.  'Careful' has become second nature at home and is obviously working for us as we have never seen her have a reaction of this magnitude since she was a baby.  Not too long ago we didn't even know what gluten was let alone Coeliac Disease

It happened like this..

We went out for lunch.  It's all part of the down south pilgrimage.. the lifestyle.. It's what you do.  With so many brilliant wineries, breweries, restaurants and cafes surrounding the Margaret River region, why wouldn't you?  We had earned the chance to go, kick back, relax.. a little too relaxed on this occasion as it turned out.

The kids were having an awesome time of it in the playground which seemed to go hand in hand with many of these places now - awesome concept thought up surely by fellow parents..
Garrick had scanned the menu and reported that they had GLUTEN FREE options available including GF pizza bases.  Awesome.  We decided to get the kids a GF pizza and some chips to share, our eldest (non-coeliac) chose the burger option , I chose a fancy schmancy salad and Garrick also decided on a pizza but of the gluten variety.

We didn't question anything.  Why?  The short answer is.. I don't know.. We never do that.

We enjoyed our afternoon. Garrick had a couple of beers, I was skipper.  We all enjoyed lunch.
We all had a great time.  It was all good.

About an hour after we had returned to our apartment Abb suddenly cried out and ran to the bathroom saying "I'm going to vomit".  It was so sudden and unexpected, we were really taken aback. Moments before, she was laughing & playing and well.

We praised her for being such a good girl and making it to the bathroom in time.  We had no idea what was about to follow.  We initially thought it had been all the running around, eating, treats etc on top of a full stomach.  We suggested she have some quiet time and have a little lay down for a while but the vomiting came with a vengeance and force that took everyone by surprise.  She didn't stop and her slight frame was really put through the wringer with her body trying to purge itself of the offender.  I knew then it must be gluten.  It was very upsetting to see her like this and to helplessly watch on.  We stood her up in the shower recess with the shower running and told her "don't worry baby, it's OK,  just be sick in there" but by this stage she couldn't stand without being held up and she had depleted any energy reserves she had, to the point where she basically collapsed in my arms whilst still retching and her eyes started to roll back.  We were upset and panicky and decided the best course of action was to get her up to the local hospital - and quickly.  

Our eldest came with me, Garrick stayed back with our youngest.  I was the best person to taker her as I was also Coeliac and could answer any questions about history, diagnosis etc.  I told the staff in emergency the series of events that led us here, the fact that we were Coeliac and what I suspected.
They were concerned.  Aside from her obvious condition, her body temperature was low indicating something sinister - they were concerned about sepsis.  They scoured her body for rashes and prepped the backs of her hands for an IV and inside arm for blood to be taken.  I was told they would be transferring her to Bunbury by ambulance as they had better facilities there.  I was thankful for their thoroughness but it scared me even more.  It was at this point that I suddenly felt very unwell.  I had just enough time to tell the nurse "I think 'I'm' going to be sick.."  She whirled around "You?" she said.  That was exactly what happened.   Several times.  I was certain now it was gluten.  I along with our eldest son, had eaten the remainder of the kids' pizza and both boys were well.  Abb was put on a drip - saline & antibiotics were administered.  Blood was taken.  She was sleeping now - exhausted.  I watched over her for a while before swapping places with Garrick back at our apartment to look after our youngest.  Garrick texted a bit later to let me know they would no longer be going to Bunbury.

What a relief.  She was showing signs of recovery.

The next morning I arrived to find our smiley girl had returned.  She had colour back in her face and was her usual happy self.  She had recovered well aside from some residual diarrhoea.  Her system was still trying to rid itself of any traces of gluten - this continued for the remainder of the day but she was allowed to go home. 

The purpose of this post is to let you know what kind of effect gluten can have on a person with Coeliac Disease.  Gluten Free is unfortunately not a diet of choice for some.

I'm not going to name and shame here. That's not the purpose of this post and if anyone is at fault - I am.  The fault is not with the restaurant.  In this case, we didn't highlight that we were Coeliac.
We didn't ask the appropriate questions or request specific food prep.  People don't understand the detrimental effect that gluten can have for someone like Abbey.

As a Coeliac we (meaning me and others like me) should be promoting awareness of Coeliac Disease and the gluten free diet.  Don't expect people to be a full bottle.  They aren't.  Sadly, cross-contamination in a restaurant can be a real concern but it doesn't have to be - if people like me speak up and explain the need for clean pans, grills and utensils when preparing our meals.  Ask about ingredients in menu items, explain that you are intolerant to gluten.  Explain that your need for a gluten free meal has been medically diagnosed.  And if you have done all of this and you are still in doubt, don't eat there.  IT'S THAT SIMPLE.  Really. 

I write this to let people know what can happen.
I write this as a warning to those of you that have Coeliac Disease.

If you are travelling well - good for you - continue to do the right things, ask questions, query food prep and possible contamination issues and don't ever be complacent.  EVER.  If we had of done these things, it would be a different story.  The fault is ours. 

I will however write to the restaurant and let them know what happened to us and highlight the importance of careful food prep, clean utensils and possible contamination issues they may not be aware of.  We found at several eateries for example, that although their chips were gluten free, the oil that they were cooked in was also used to cook gluten containing foods. This means that the chips are no longer gluten free.  I will be writing to these places also.  The point of this exercise is to educate, not to point the finger.

I'm not trying to save the world here, just trying to look after my family and maybe help out someone in the process.  Maybe by speaking up, one small voice can make a difference.  I hope so.