Ok…confession time. When it comes to celiac disease, I know tons and tons about the realities of the disease and how to best deal with the ins out outs of it. But when it comes to the actual medical lingo, I’m not quite as versed as I should be.
But when I received an email from a scared 12-year-old girl whose doctor is saying he wants to test her again for celiac disease, my internal WTF alarm went off.
Here is her email:
I’m 12 years old and I was diagnosed with celiac disease about 3-4 years ago. I recently went back to my specialist and he wants me to get another blood test so I have to eat gluten again. Luckily, my celiac isn’t that severe but he also put me on laxatives and Vitamin D supplements. I feel really embarrassed about all of this because just today I pooed in my pants without even noticing! Luckily, I was at home but it’s still pretty embarrassing.
My mom said it was just my bowel getting used to the gluten again.
My doctor also said I might have to get three small bowel biopsies which scares me. I also might have low thyroid and to top it all of I’m hyper mobile! So when I don’t have a sore stomach from gluten, my joints hurt. With my celiac, whenever I go to parties I always take my own food and at my class party a girl Brought in gluten free lollies for us to share.
Anyway I just thought I’d share my celiac story!
I thought it was great that this brave girl reached out to me for help, yet at the same time I felt totally frustrated for her. Why go through an unnecessary medical procedure? Why go back on gluten again when you have celiac disease? I responded as follows:
Hi there. I am so sorry you are going through this. Why does your doctor want to test you again? If you were diagnosed once, than you have celiac disease. Is there something I’m missing? Is he retesting you for a specific reason? What does your Mom say about all of this?
I just heard back from her and her is what she had to say:
I’m getting retested because on the scale thing (I’m not sure what it’s called) I originally was on 41 but since I’ve been on a gluten free diet it’s gone down to 13. They believe it could be something else, but they aren’t sure so I’m getting retested. My mom is okay with it I guess but we’re just slowly introducing gluten into my diet so my bowel can get used to it I guess.
Ok folks…please help me help her. Any medical professionals out there who can guide me in the proper response? What is the “scale thing” she is talking about.
She’s 12, she’s scared and she is poisoning herself. My question to you. Is this necessary?