Our Celiac Disease Story {Part 1}: Those Silly Yaks!

Honestly, I can't remember if I have shared our Celiac Disease story on the blog. It's quite possible I did. I have people asking me all the time how I figured out that my 3 year old daughter has Celiac. So I can't remember if I have typed this out in an email, a Facebook bar, a blog post, or just talked to some random stranger in the grocery store. If it was here, forgive me for being redundant.

If it wasn't here...well, it's high time I got this written down, eh? (That and stop talking to strangers in the grocery store.)

The story really begins with my oldest child, Dee. He has had a severe milk allergy, as well as other allergies (shell fish, fish, seasonal, animals) and asthma since he was a brand new baby. We discovered his allergy quite by accident when he was only a few months old. A pediatric allergy specialist and all his high-finagled testing confirmed our suspicions when he was 6 months old. But that's another story for another day.

After parenting this first-born, allergy-ridden kid, I was aware of some of the signs and symptoms of food allergies in children. And I saw some of these signs and symptoms in my third child, Elle.

Early 2011, we had moved to another state and I needed to make contact with a new allergist in the area for Dee. While Elle didn't seem anywhere near as "allergic" as Dee (he has anaphylactic reactions where he swells up and has a hard time breathing when exposed to milk among other things), there were enough signs and symptoms of a food allergy that I wanted to have her tested (dark circles under the eyes, watery eyes, diarrhea, often mucousy diarrhea, dry skin). If for nothing else, it would give me peace of mind. I made her an appointment at the same time I made one for Dee.

The allergist is a busy lady so it wasn't until early Fall of 2011 that we finally found ourselves sitting in an exam room. Both children were tested via skin testing for food allergies. Dee was retested to see if he had outgrown any of his, which he had! (Add fish and shellfish back on to our meal plans! Yes!) Yet, he still tested highly sensitive to milk. Bummer.

When Elle's skin testing came back negative for all the major food allergies (including wheat by the way) I was surprised. I just felt that something was amiss with my little 3 year old. Call it a hunch. Call it Mother's Intuition. Call it Hypochondria.

The doctor suggested we draw blood and do more sensitive testing. Then she asked about Celiac Disease.

Huh???

Was there any family history of Celiac Disease.

Yes. My uncle and his daughter and her daughter.

Well, let's throw that test on there too since we're drawing blood anyway. Can't hurt to just check.

We had Elle's blood drawn and I admit, I walked out of the office wiping the whole incident from my mind. I figured I was just being a hypochondriac mother. There's nothing wrong with my kiddo. Moving on...

A couple of weeks later, it was a Tuesday night. 9 pm. My cell phone rang and I didn't recognize the number. Who would call this late at night?

"Hello, is this Elle's mother? This is Dr. B. I wanted to talk to you about Elle's recent blood tests."

I was caught off guard. Honestly I had hardly remembered she had even had blood drawn.

Then the doctor's voice took on the tone of an adult on a Charlie Brown show.

"Waa waa wah waaaa Waaa waaa. Wa waaaaah Waaaa Wah. Waaah wah waaaah."

Hardly a thing she said registered in my head. Mud. Clear as. Still I found myself nodding and saying the words "Yes, I understand" and "Okay" when a voice inside of me was saying, "Hold up! We DON'T understand! And this is NOT okay!"

She then asked if I had any questions to which I calmly said, "Nope. Thank you." and promptly hung up.

Then the dam broke and the flood rushed forth.

My daughter has tested positive for Celiac. And not only tested positive, but has soaring high numbers. My daughter has Celiac.

Huh???

Several hours of googling, a few flabbergasted Facebook status updates, two teary phone calls, a multitude of prayers, and some grieving for lost life expectations later...

I was ready to begin facing this monstrous thing called "Celiac Disease". Or at least what felt monstrous at the time.

There are mountainous learning curves to climb when adjusting to a gluten free life, but we come from hearty stock. Mountain climbers we shall be. Perhaps whiny, dawdling, stumbling mountain climbers. Yet, still, moving in an upwards and onwards direction.

Several months later we are still learning, but we are finding our groove with wonderful help from our GI doctor, a dietitian, friends and family who struggle with CD as well, and a wealth of information available at our fingertips online.

So while life is a little more complicated these days, it is still very, very good! (And delicious!)