Thursday, October 1, 2015

The Dark Horse: Our Backstory

Oftentimes, people who do not know me think I am a Martha-Stewart-y type woman, or at least one that loves to bake - why else would I use weird flours like tapioca starch or garbanzo bean flour? (Nope, not Martha. Nor do I love to bake, just do it for the eating part.)

What they do not know is that it is the ultimate in irony I have a child with a diagnosis in which I would have to learn to keep him safe and healthy through my kitchen. My kitchen! Here was my first attempt at making a Christmas tree cake for the kids oh-so-many years ago, so you get a feel for my inherent culinary skills:

Our Celiac backstory actually begins when I lost feeling in my face seven years ago. I had been experiencing other issues the previous year (mainly unexplained neuropathy), and had been seen by umpteen doctors and had no real answers. When half of my face went numb, the doctor ordered an MRI - which came back "brain is unremarkable" (the only time I would cheer at being told that, right?) - and was left with no answers and a numb face. So - it was up to me, Google, and God to figure this out.

In Googling "half numb face," the only real hits I was getting were about this disease I knew nothing about, Celiac disease. Journal articles at that time claimed that up to 15% of people with this type of numbness had undiagnosed Celiac disease. Next step was looking into this "Celiac" - and while researching, I saw pictures that stopped me in my tracks. Skinny little toddlers with enormous, distended bellies - they looked just like my three year old.

A few weeks passed and with the turning of seasons from winter to spring, it was time to switch out clothing for my sons. My three year old tried on clothes from the previous year and they all fit perfectly. I measured him and it seemed as if he had not grown at all. We decided to call the doctor and get an appointment for verification - and ironically, his pediatrian was a man of short stature; their website that month joked "are you taller than the Doctor?"

Our doctor confirmed that our son had indeed not grown - and had fallen completely off the growth chart. He ordered tests for bone age, thyroid and growth hormone. I asked him if he would run tests for Celiac - to which he replied - "if this is the Kentucky Derby, Celiac is the dark horse" - but graciously, he ordered the tests. He spent several minutes in his office, researching which tests to order, and told me to give him a call in two weeks for the results.

Four days later, upon returning home from a park playdate with my sons, there was a red flashing light on the answering machine. It was the doctor himself, saying the test results were back - and to call him. Of course it was noon straight up, and the office had just closed for lunch. My heart raced through those next 60 minutes, and my gut knew what was coming.

When I called, I was patched directly to the doctor, who started off with "it's not his thyroid... it's not growth hormone... I've never seen anything like this before, his numbers are off the charts!" Four of the six panels had come back, levels over 200 (normal range is under 20), yet my son was not having stomach pains or diarrhea (*though in hindsight, this was an issue when he was younger but it seemingly resolved) or anything the doctor was taught were the signs of Celiac. He said it was "silent Celiac" and wanted us to get him to the Cleveland Clinic (we lived nearby at the time) as soon as possible.

We were fortunate to get into a wonderful pediatric GI within the week, but it was weeks before the endoscopy could be done (though the doctor said she had never seen blood levels so high without a positive endoscopy, the endoscopy is the gold standard for diagnosis). Those were the hardest weeks, feeding my graham-cracker-addicted tot what I now knew was poison to him, grieving as I knew those favorite foods would soon be forbidden.

The doctor came out of the endoscopy and showed us pictures of our son's intestines; she could see the damage and knew the diagnosis though the lab would have to confirm in the next few days. A week later, we met for the results and our son was officially given the diagnosis of Celiac Disease, had a consultation with a dietitian, and were sent on our way.

I am so grateful to both of these doctors - our pediatrician for listening, and ordering the tests. The  pediatric GI, who had the bedside manner of a mom, which is just what this mom needed to get started on this journey. The average time it takes for diagnosis in America runs anywhere from 7 to 11 years --- and for us, it was a matter of months.

Rarely do I journal, but strangely, I wrote a lot during this time. I was in the midst of Beth Moore's Bible Study "Stepping Up" and it encouraged me greatly in that time of stress, very comforting as we were ruling out scary diagnoses while being assigned other ones. I'll leave you with my favorite encouragement during that time: "...everything we believe to be the death of us is instead a hand-engraved invitation to a new beginning." With my health issues, my son's new diagnosis, and a 227 mile move in our near future that was not even on our radar yet, this was the start of our new beginning.


  1. Thank you for posting this today - I needed to hear your story to help me understand that our family is not alone - I wish more doctors understood celiac so it's one of the routine tests for poor growth and low iron!

    1. Thank you so much for your comment! You are not alone - and that is my exact motivation for sharing. I never want anyone to feel that way!