A Mother’s Reflections of Raising a Child with Celiac Disease
- By Amy Leger
- Published 05/15/2009
My daughter was diagnosed at 15 months old back in 2000. I have been passionate about celiac disease and the gluten free diet ever since. Now my brother was just diagnosed and during the 2008-2009 school year my husband and I took in a Norwegian exchange student with celiac disease. I have just started a blog called www.thesavvyceliac.com and enjoy sharing my views and experiences with others through my blog.
On this Mother’s Day, I found myself thinking back to all those times during Emma’s illness, subsequent celiac diagnosis and eventual permanent lifestyle change where the Mom really came out in me, both quietly and ferociously.
Here’s my list starting with before diagnosis and goes chronologically from there - maybe you can relate:
- Before diagnosis, wondering why my daughter, celebrating her first birthday, refused to eat cake and threw a tantrum.
- Looking at my 1-year-old daughter with skinny legs, bloated tummy, and crabby disposition and wondering - is this the way the next 17 years will be.
- Questioning doctors about why my daughter throws up so much and has such a big belly - I was treated like I was an overprotective mom who knew nothing.
- Cleaning up vomit on the carpet, on clothes, in the kitchen, in bed, on the wall, on stuffed animals, etc.
- Leaving work early and in tears because something was wrong with my daughter and no one knew what it was.
- Feeling the best relief ever when a gastroenterologist confirmed our doctor’s eventual diagnosis of celiac disase - just by looking at her. Solidifying the fact that we weren’t crazy!
- Getting up at 4:30 a.m. to fix 16-month-old Emma breakfast at the latest acceptable moment because she couldn’t eat for 8 hours before her endoscopy and biopsy.
- My eyes welling up in tears as the anesthesiologist put the mask on my daughter to put her “under” for the biopsy. She was fighting and crying and then her whole body went limp.
- Panicking at our local grocery store, as I looked for gluten-free food for the first time. I only came home with eggs, Cheetos and Corn Pops (which now are no longer gluten-free).
- Being so happy that my husband had gotten me a bread maker for Christmas the year before; a gift my male co-workers thought was so dumb, ended up being such a blessing so I could make gluten-free bread.
- Feeling the joy after only 7 days on the gluten-free diet, Emma was a completely different child. Happy and no longer sickly.
- Being frustrated because I had to convince many friends and family that celiac is a lifetime disease and her diet had to be taken seriously.
- Grieving the loss of “normalcy”.
- Being relieved after finding other parents who had recently started a celiac support group. We all came together and eventually started planning our annual fundraiser: Making Tracks for Celiacs.
- Being nervous about sending Emma to Kindergarten, but pleased we found one hot lunch she could take: Tacos!
- Celebrating victory when she ate tacos for the first time at school and they were “awesome!”
- Feeling bad when I had to tell her that tacos were no longer available on the menu.
- Making 3+ years of daily cold lunches for school.
- Feeling victorious when our school found gluten-free food options for Emma, which led to a gluten-free menu!
- Feeling strong enough as a mom of a celiac child, that we took in Ida, an exchange student with celiac; I started this blog; and I am teaching an occasional gluten-free class.
Now that’s a great mom! Happy Mother’s Day!
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