When You Can’t Actually Make This Up…. 

We have been gluten free for one week. As soon as her labs came back the pediatrician informed me to make sure Oo has a gluten free diet immediately. I went grocery shopping within the next hour, and spent the weekend sterilizing our kitchen. 

I also have spent a week talking about a gluten free lifestyle with Oonagh. I’ve given her language to always tell grownups she has Celiac. I’ve researched, and communicated every new finding with my family. She looked at the Starbucks bakery display today, and said that’s gluten. 

My friends bought and purchased fancy gluten free bagels for our weekly play date. 

I’ve meet with a family nutrition counselor, and an Occupational Therapist. Give me a job, and I get it done. 

After a million phone calls, and hiring a patient care advocate (PCA) we were rushed into a pediatric gastroenterologist today. (Seven days after receiving labs that indicate Celiac. Prior to PCA intervention I was given an appointment 12 weeks out.)

We learn that Celiac can only be confirmed via endoscopy. We learn that a gluten filled diet must be present to get a positive biopsy. We learn that one week gluten free means we now need to reintroduce gluten for 25 days to get a positive diagnosis with endoscopy .

Puppies and Besties brightened our Friday.

We learn that without a diagnosis we can never ask for schooling accommodations. We learn that without a positive diagnosis we can never receive coverage for Celiac health care. (Everything from diabetes screening to counseling can and will be denied.) I quickly realize that without a diagnosis I can’t advocate for her. 

So the speacilist said “yes these lab results are very consistent with Celiac, and yes her symptoms also suggest Celiac, but I can’t diagnosis.” We also heard “all of the indicators of Celiac are present.” 

There is no choice to be made here. I asked my spouse three times on the ride home if we made the right decision to reintroduce gluten and proceed with testing. He confirmed that we made the only choice. 

I gave her gluten filled bagel tonight, and it made me sick. I have to poison this sweet girl for 25 days to be her advocate. You can’t actually make this shit up. 

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2 thoughts on “When You Can’t Actually Make This Up…. 

  1. Mommy, I got tears in my eyes and actually got a sick feeling in my stomach when I read this. My heart is breaking for your baby girl and for you. Just want to say lots and lots of bad words. Will be praying. Big Hugs to everyone.
    Love,
    Granny D

    Like

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