Disease is a Scary Word

Disease is a scary word.

Especially when attached to your four year old daughter.

My baby, my BABY, has Celiac Disease. That word. I hate it!

Harper has been having some health issues. Nothing that seemed detrimental. Symptoms so random that I would have never put them together. Chronic diarrhea (causing accidents in my potty trained big girl), nose bleeds, body aches, mouth sores, low grade fever. Her tiny frame we weren’t so concerned about…she has always been itty-bitty. But when we saw the pediatric gastroenterologist last Monday, this seemed to be his main concern. Her BMI (body mass index) was 4. Not even close to being on the charts. Our girl is underweight. “Failure to thrive” is how the doc described it.

We had already done blood work in January for a swollen lymph node, so when the specialist ordered more, I thought it a waste of time. But two days later he called…and our world was changed. Harper had tested positive for Celiac Disease. We would need to get her in immediately for an endoscopy and biopsy of her esophagus and intestine. Endoscopy? Biopsy? Celiac???

I cried even before I understood what Celiac Disease was. And I have cried a hundred times since.

This is Celiac Disease as described by The Mayo Clinic:

Celiac disease is an immune reaction to eating gluten, a protein found in wheat, barley and rye.

If you have celiac disease, eating gluten triggers an immune response in your small intestine. Over time, this reaction produces inflammation that damages the small intestine’s lining and prevents absorption of some nutrients (malabsorption).

The intestinal damage can cause weight loss, bloating and sometimes diarrhea. Eventually, your brain, nervous system, bones, liver and other organs can be deprived of vital nourishment.

In children, malabsorption can affect growth and development. The intestinal irritation can cause stomach pain, especially after eating.

There’s no cure for celiac disease — but following a strict gluten-free diet can help manage symptoms and promote intestinal healing.

The more research I did, the more frightened and overwhelmed I became. No cure. And Celiac’s are 3 times more likely to be diagnosed with lymphomas and other stomach cancers, and to suffer fertility problems, miscarriages, and pre-term deliveries.  Harper was born to be a Momma, and I have prayed from day one that she get to experience the love and wonder of having a baby…So I cried.

I cried thinking of Easter and how my four year old will hunt eggs filled with candy that is poison to her body. I cried when the school told me that along with her breakfast, lunch, and snacks, I would need to be sure that she is always sent with a ‘special occasion treat’, because when the other kids celebrate a birthday, she cannot have the cake. She’s FOUR. We have a birthday party every weekend. I cried because I was sad for her. I was afraid she would feel different, left out.

I selfishly and ridiculously cried for myself. I am a working Momma. I don’t have a spare second in my day. And now I have to shop at specialty stores, and bake special treats, and pack every meal, and worry every time she is under another’s care that they will be dismissive, or uneducated.

The more I learned, the more I cried. Separate toasters to prevent cross-contamination. Squeezable jelly containers for the same reason. New chapstick, and vitamins, and shampoo…all gluten-free.

And the more I cried, the more guilt I felt. It could be worse. Way worse. Other Momma’s go through so much more, a fact that was not lost on me. Even in the midst of my breakdowns, I understood this.

But the more I learned, the more impossible this all seemed. Until Sunday…when our class at church studied the book of Acts, chapter 12. Peter could have never escaped Herod’s prison on his own. He could have never broken those chains, and walked past those guards, and opened the prison gate, without God. My task isn’t nearly as daunting. What am I whining about? Me and God, we got this.

Yesterday, Harper was put under. A scary thing for any Momma. She was so brave. Only I cried. The doctor performed the endoscopy and biopsied three spots. We received the best news we could have hoped for-there isn’t a sign of advanced stages of the disease. We caught it early, before much damage was done. We will receive the biopsy results later this week. And then we will begin our lifestyle change. Then we will meet our dietician and our nutritionist and we will be on the road to recovery.


Post-procedure Popsicle

Post-procedure Popsicle

I took Harper to the grocery store yesterday evening for an experimental shopping trip. I have briefly explained to her what is happening and she is very relieved by the idea that she will no longer have accidents at school. She proved to me once again that she is a toughie, my resilient little angel.

“Momma, is that gluten-free???”- Every time I added an item to our cart.

I know that there will be struggles, and more tears, but right now I can smile as think about her wedding day, her Daddy’s arm around my waist, as we watch our Lady Bug cut in to her gluten-free wedding cake.


One Response to “Disease is a Scary Word”
  1. The Mommaleh says:

    I am so sorry for what you and she are going through. The good news is that there are absolutely tons and tons and TONS of gluten free options to choose from now and most of it is kid friendly. Even our local WalMart has gluten free chicken nuggets and gluten free cookie dough. I’m thrilled they caught it early before it was out of control.

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