I love this. I really, really love this. It’s a celiac rant with a positive spin.
Because our disease is connected to food, it’s the food that tends to get all of the focus. Food is sexy I guess; disease…not so much.
But the conversation needs to be about the disease.
Believe it or not, as much as it can be a gigantic pain in the butt, not eating gluten is the easiest thing about celiac disease. It’s all the other crap that goes along with our disease that makes it challenging to live with.
So this mom’s rant is spot on.
We’re not deprived. We’re not missing out on life. We have an autoimmune disease and we are doing what we have to do to stay alive.
So please don’t pity us because we can’t have bread. Honestly…it’s the least of our worries.
Here’s her awesome rant…
My son has celiac. He is almost three. We found out when he stopped growing and had persistent diarrhea.
His growth chart is less smooth curve and more flat line followed by a spike. After almost a year and keeping a photo of his growth chart on my phone as a visual aid (better than the alternative visual aids) I still feel like people think I’m the crazy mother that takes things too seriously. I can never tell if that look of pity that follows when I intercept the bag of chocolates headed towards my son at his cousin’s birthday party is because he can’t eat the treats or because crazy mom won’t let him.
I wonder if people actually think I do this for fun sometimes. A little won’t hurt him. Why would there be gluten in chocolate? What happens when he eats gluten again? What CAN he eat?
I spend so much time just explaining this disease and educating and trying my hardest not to clock those stupid pity faces. Its tiring.
Meanwhile I feel as though my son gets lost in his label sometimes. He’s the one with the special diet. That has special snacks and special bread. He’s the two year old that knows how to say “gwooten fwee”. He’s the boy that doesn’t get to eat cupcakes with everyone else and whose mom is always helicoptering around him while he eats with other kids.
It would be great if they would see all the positive that come with his “special diet”. That spike on his growth chart. His smile. His outgoing nature. The boundless energy he has found. The color in his cheeks. The adorable way he says “gwooten fwee”.
I guess what I am raging against the most is that folks are raining on our parade. It’s hard enough having to tell him no he can’t eat this or that, helplessly trying to comfort him when he gets glutened, worrying about what he can eat when we go out and how he will survive sleep overs and kindergarten.
It would be nice if people would stop pitying his diet and rejoice with me in all it does for him.