Today is Celiac Awareness Day.
Today, like everyday, I prep my gluten free food for my family. Today, like everyday, my son JT has to be careful about what he eats, what he touches. So even though we are very aware everyday of Celiac disease, I am glad that more people will learn about it.
I get frustrated when people treat Celiac disease like a mild allergy or like we are all going gluten free because it's trendy. First thing you should know is that we are very far from ever being trendy. The second thing you should know is that even though gluten free food has come a long way (even in the last two years) no one would ever choose this for fun.
A gluten-filled cake still tastes a million times better, believe me. And the cost is astronomically more. When I walk by signs in the grocery store for loaves of bread on sale for $2.00 I feel physically ill. A gluten free loaf usually costs around $6 and is half the size of a "normal" loaf.
But the most important thing you should know is that Celiac disease is an autoimmune DISEASE. It is a lifelong, no-cure, disease. If left untreated it's a harmful disease that can lead to infertility, cancer and neurological complications.
What I know about Celiac disease is that my little boy has it. He is little, or as he says a "short 6," but strong. He rolls with not ever being able to have the snack at school, birthday parties or after the game, but deep down it sometimes bothers him.
What I know about Celiac disease is that my heart hurts for my son. I hate that his immune system doesn't work properly. I worry that he will eat something with gluten and get terrible stomach pains and feel sick for days.
What I know about Celiac disease is that our whole family eats a gluten free diet at home. Two years after we began this journey, we still have a long way to go to find a wide variety of affordable meals.
We are lucky that we can treat this disease with the right diet. I truly appreciate that fact and I am so grateful my son can live a "normal" life. But at the same time, I am going to stop downplaying my son's Celiac Disease. I'm going to stop apologizing for being worried or getting upset because he's not anaphylactic. It is a disease. A disease that my son will have for the rest of his life. A disease that he will have to manage and watch over.
It is my job to find the right balance between making him understand this and respect it, but also not feel left out or let it define his whole existence.
To learn more about Celiac Awareness Day click here.
A gluten-filled cake still tastes a million times better, believe me. And the cost is astronomically more. When I walk by signs in the grocery store for loaves of bread on sale for $2.00 I feel physically ill. A gluten free loaf usually costs around $6 and is half the size of a "normal" loaf.
But the most important thing you should know is that Celiac disease is an autoimmune DISEASE. It is a lifelong, no-cure, disease. If left untreated it's a harmful disease that can lead to infertility, cancer and neurological complications.
What I know about Celiac disease is that my little boy has it. He is little, or as he says a "short 6," but strong. He rolls with not ever being able to have the snack at school, birthday parties or after the game, but deep down it sometimes bothers him.
What I know about Celiac disease is that our whole family eats a gluten free diet at home. Two years after we began this journey, we still have a long way to go to find a wide variety of affordable meals.
We are lucky that we can treat this disease with the right diet. I truly appreciate that fact and I am so grateful my son can live a "normal" life. But at the same time, I am going to stop downplaying my son's Celiac Disease. I'm going to stop apologizing for being worried or getting upset because he's not anaphylactic. It is a disease. A disease that my son will have for the rest of his life. A disease that he will have to manage and watch over.
It is my job to find the right balance between making him understand this and respect it, but also not feel left out or let it define his whole existence.
1 comment:
I could've written this myself. Just substitue "he" for "she". We haven't had to deal with school yet, but she'll be in preschool next August. I may be tweeting you for help/wise words/inspiration/pep talks.
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