Audrey Update: The First Diagnosis

photo(7)After 5 years of questions, pain, suffering and more doctors than I can count we have received our first diagnosis for Audrey.  Before I get into the details of what that is I need to make a huge request from you all:

Please no advice, no shared stories, no “I know how you feels”.  I realize that everyone’s hearts are so well meaning, and always good intentioned.  You each have your own story & journey, and while I value what you’ve learned along the way I’m not in a good place to receive it, at least not right now.  No two people face the same things in life and right now, I need to work on how we are going to face ours.   I appreciate the love & compassion, those kind words will always be something I love and welcome – just for now, please no advice.

Today, Audrey was diagnosed with Celiac Disease.

Back in late October Audrey began showing serious symptoms of fatigue again, pain in her head and tummy pain.  We once again made the trip to our Pediatrician, she ran a gamut of tests, including the one that tests for Celiac disease.

This test has been run many, MANY times before and has always come back negative.  Running it this time was an after thought and one we assumed would come back the same.

It didn’t. 

The levels it came back at where much, much higher than normal and from there it’s been a whirlwind of Children’s hospital, urgent biopsies and today diagnosis.

Hearing those words shifted my world upside down.  I truly didn’t believe Celiac was what we were facing.  I’m also feeling intensely overwhelmed at the moment, this is going to take a while to process.

Here’s what Dr.I said when he called today (some he told us when we met in his office, per-diagnosis):

– Audrey’s biopsy came back positive for Celiac disease and due to the nature of her symptoms and the results, starting tonight we had to implement her strict gluten free diet

– Her Celiac is relatively new.  While she always carried the gene for it, it’s only become active in the last year (which was when her last test came back negative) and it isn’t what has caused the things that have landed her in hospital to date.

– They don’t know what causes Celiac to become “active” in a person sometimes it’s an intense illness (like what’s had her in hospital before) that shocks the immune system and kicks it in.

– Hopefully our immediate changes to her diet, lifestyle, including what touches her skin will begin to show us results within 2 weeks

– If some of the other symptoms persist we are still in for more doctors and tests to identify if there is a secondary illness causing them

– Bethany will need to be testes for Celiac as well.  Since it is a genetic disease she has a 1/30 chance of also having it.

– Children’s has a dietician who will be contact me in the next few weeks to help us learn this new world

What I know:

– For a while this is going to be hard but it will get better.

– Eating in this house is going to be tricky at best.  Most of what Audrey will be able to eat is danger food for me, corn is one of the main subs for gluten. 

– School is going to be hard for a while but we’ll adapt

– Even though I’m frustrated, God is still good.  He still loves us, and His purpose in all this will shine through, it will only take time.

– I will forever be thankful that nobody told me she was dying today, they aren’t taking her away from me, and Celiac is something we can control.

– It is a massive blessing that Audrey’s favourite foods are chickpeas, hummus and veggies.

After I hung up with Dr. I today I cried.  I cried harder  than I have cried in a very, very long time.  I needed those tears, I needed to mourn and then I needed to pull up my socks and carry on.

Audrey is handling this new beautifully as is Bethany, they are a “team” and this is another thing they want to face together.

 We’ve told them God has made us each special and that this is another way Audrey’s body is special.  We’ve given this diagnosis to her and we’re going to teach her to own it.  She’s a knowledge based kid and the more she knows the more power she has.  And if you know anything about Audrey you know that she loves her some power!

Again friends, thank you so much for the love, the prayers, the support and so many other things.  You are incredible gifts to us that we will eternally be thankful for. 

Our road with Audrey’s health hasn’t ended, we know there is more that lay ahead but for the first time in her tiny life we have the makings of a planned course.  It may still be the bumpy path of gravel but somewhere up ahead is the pavement, and one day things will begin to smooth out.

2 thoughts on “Audrey Update: The First Diagnosis

  1. So glad that you have an answer….I can’t believe what she and your family has had to go through. She is a tough girl and you all will adapt to this change. ASHLEY you are one of the toughest Mom’s I know and AJ is very lucky to have you looking out and helping her through this very critical life change. My love and thoughts are with you all. Xoxo Auntie Chelsea

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