Knowledge it is said, is power. Most of the time, this is very true. However, there are times when a little less knowledge never hurt anybody. Like knowing exactly what my teenager is up to while out with his friends. Or what hot dogs are really made of.
I didn’t want to know that my daughter has Celiac disease. She was asymptomatic and has grown like a weed. Okay, so she had the very intermittent, minor stomach pains but show me someone who doesn’t. My daughter already had one autoimmune disease – Hashimoto’s Disease (which affects a person’s thyroid function.) Thank you so much for your interest Celiac, but we’re not hiring anymore diseases, have a good day.
I only have me and my big mouth to blame. Last October, I was chatting with a close friend who is a Health & Wellness Coach and mentioned my daughter’s periodic stomachaches. My friend casually suggested that I consider cutting gluten from her diet. I raised this topic to my daughter’s endocrinologist a few days later and the whole diagnostic process was set in motion.
Nine months later after several blood tests, a visit to the gastroenterologist and a biopsy, here we are. Part of the Celiac people. It’s my daughter’s GI system, yet I feel like I’ve been punched in the gut. I know, I know – countless well meaning people have tried to console me:
- It’s better to have Celiac now that there are so many food options; it was much harder in the past.
- It is better to know when she is young (11-years-old) as it will be easier for her to change her eating habits.
- Knowing this young can prevent health issues in the future, like stomach cancer for instance.
I appreciate people’s kindness but the truth is, I don’t wanna deal with it. Aside from my own self-pity, I feel badly that my child has to deal with this latest diagnosis and be hyper-aware of her health and diet at such a young age.
My husband runs an association of gastroenterologists. I told him, “I want you to search far and wide and find me a doctor who says we can blow this off. Our child is perfectly healthy and asymptomatic.”
No such luck. Fortunately my daughter is being way more mature about it than I am. We held off telling her at sleep-away camp and thought we’d tell her when she came home and asked about it on our beach vacation. That didn’t happen. The days flew by, we all indulged in a gluttonous gluten-fest and she never asked about the biopsy results (which she had inquired about in a letter from camp.) Driving home from the beach, she finally asked.
“Do you really want to know?” I asked her.
She rolled her eyes and sighed. So we stopped and bought her a pony on the way home from the beach, to soften the blow of the diagnosis.
Not really. We told her we would learn about the disease together, gently dip our toe into the Celiac waters and gradually make the switch to a gluten free diet. And that’s what we’re doing.
“I think I’ll start by going gluten-free for breakfast,” she announced.
Sounds like a good plan to me. We’ve begun the trips to the grocery stores to purchase a variety of foods and snacks for her to sample.
Before she got the news about this latest auto-immune disease, my daughter remarked that if she hadn’t been diagnosed with Hashimoto’s disease, she would not have met her endocrinologist who would not have recommended the dance studio where she happily dances now. Wow – I was struck by her ability to make lemonade out of lemons.
Thank God she’s resilient. I guess it runs in our family. Let’s hope that Celiac doesn’t.
Thank you for sharing your stories with such honesty and humor. I can relate to them all. Susan, I admire you. Your family is lucky to have you. -Sharie
We’ve all got something. Sometimes it’s visible and sometimes it isn’t, but it’s what makes us who we are ( :
I’m sorry Susan, but welcome to the Celiac Community 😦 I am happy to chat about managing Celiac and Griffin wouldn’t mind talking with your daughter on what is like to be GF as a kid/teen. He was recently diagnosed with Crohn’s as well and I felt the same way…. no thank you Crohn’s we’re already Celiac. He remarked why not be C squared. Kids are amazing!