Thankful for Celiac Disease

Audrey 2015

February 10 2015 is a day I will never forget.  That phone call a permanent recording in my memory bank.  I cried harder that day than I have cried in my life.  My body physically hurt from the sobs, my stomach turned with nausea and my mind spun with all of the “couldn’t eat, couldn’t do, never will again”‘s.  It was the day that Audrey was diagnosed with Celiac disease.

It was a pivotal day for not only Audrey & our family but for me and my faith.

For the first time in my life I felt like God had let me down.  I knew that He had answered my prayers, and I knew that He cared, but in the days that followed, I struggled to understand.  I couldn’t understand how He could have answered my desperate prayers with Celiac disease.  Selfishly, how had He let Celiac disease happen to me, as a mother.

I wish I could go back and wrap my arms around that me.  I’d tell that broken mama what I’ve learned about Celiac disease, about Audrey and about God’s true faithfulness.

Believe it or not, the diagnosis of Celiac disease was not the worst thing to happen to our Audrey girl or our family.  Oh, I still have moments where it leaves me frustrated, where I wish it were gone (don’t get me wrong, if I could make ALL of her health struggles disappear I would..but no matter how hard I try, I can’t), where I want to rip my hair out because people are ignorant and don’t understand.   I also have many more moments of something else… 

Perspective and clarity.   They have shown me that inside a diagnosis of Celiac disease are many hidden blessings:

  • Above all else, I’ve learned how strong our Audrey is.  She has handled this diagnosis with grace, courage and determination, owning this part of her life.  She asks questions, makes good choices (she could sneak things if she wanted to, but she doesn’t) and won’t eat anything unless I’ve OK’d it first.  The strong willed nature that God gave her might be making my hair go grey but it’s also the thing that will allow her to flourish in life.
  • We no longer find Audrey curled up on the floor in pain, or hear daily complaints of tummy aches. 
  • Removing gluten from her diet has given us yet another door to teaching our children about label reading, processed food and making healthy choices (with or without gluten).  Conversations that will benefit them greatly as they become adults.
  • The massive, over the top, exhausting mood swings vanished in a matter of a week.  From mid August 2014 (when they guesstimate her Celiac “kicked in”) Audrey had the most bizarre, physically exhausting, emotionally trying mood swings we’ve ever seen.  They left us afraid that we’d never survive raising her, that she’d never survive being raised by us!  Changing her diet was like getting a new, firey, sweet, stubborn little creature and believe it or not ALL of those traits were a welcome exchange for who she’d been.
  • We are SO lucky that Audrey was diagnosed with Celiac disease in 2015, when gluten free is “trendy”.  Many restaurants are learning quickly how to prepare celiac safe meals and stores carry gluten free options for almost anything.
  • Cooking & baking gluten free is NOT the bland, horrible, daunting task everyone made me think it would be.  I’ve been able to replicate most of our favourite baked treats and let’s be honest – when you’re eating clean & healthy (which we do 85% of the time) you don’t have to worry a lot about gluten.  Fruits, veggies, real meat, rice, quinoa etc are all naturally gluten free.

We are in a rough spot with Audrey again.  She’s been facing other (non-tummy) health issues again and at times has really been physically struggling.  We have test results once again coming back not good and are in a position very similar to the one we were in last year at this time.  We are waiting on more results to come back, have referrals to 3 new departments at Children’s hospital and are currently awaiting those appointment dates.  The fevers have returned and I touch her often with trepidation, that my touch will be met with heat.

It’s easy to let the fear creep back in, and while I really have my moments of panic this time is different.  This time I have the perspective of a diagnosis I thought would destroy our world and instead it’s given Audrey a piece of her life back.

God answers our prayers always.  Sometimes those answers are the ones we want, sometimes they’re the ones we dread and other times the answer is simply to just wait. I’ve spent the last 6 years thinking we were in the “wait” zone, but that’s not true.

Our prayers have been continually answered, in the number of diseases that have been ruled out, the number of times they looked for cancer and found none, in the fact that she’s going to be 7 years old – in a diagnosis of Celiac disease.  

BEST

Remembering that gives me confidence that He will continue to do as He promises in Jeremiah 29:11-13, it gives me the strength to face each day with joy and it gives me the courage to say, I am thankful for Celiac disease and all of the blessings it brings.

2 thoughts on “Thankful for Celiac Disease

  1. Ashley, you have been through the fire with all that Audrey has endured and through it all you have been such a phenomenal momma and advocate. We will keep your family in our prayers! Love to you all!

  2. Love to you, as you navigate even more uncertainties with your baby girl. You really have been through the fire. I appreciate your perspective and spirit of gratitude. xo

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