Since sharing my raw post about what it feels like to live with celiac disease, I’ve gotten hundreds of comments, emails, and DMs from the celiac community thanking me for putting some of what they feel into words.
This year I wanted to share more of a community perspective, so I posted the following statement on my Facebook page and asked people to comment. “What I wish people knew about celiac disease is _______________.”
I asked my friend Gluten Dude to share it on his page as well, and we got almost 300 responses.
If you have celiac disease, feel free to share this with friends and family who might not understand. If you don’t have celiac disease, you will at some point know someone who does, and this can help you have a better understanding of what they go through.
So, without further ado, this is what we want you to know about celiac disease.
It’s real.
Celiac disease is not a fad, it’s not a diet, it’s an autoimmune disease.
It’s not an upset tummy disease.
While some of us have gastrointestinal symptoms, celiac disease affects the entire body. There are over 200 known celiac disease symptoms, ranging from joint pain to neuropathy to infertility.
No, I can’t have just a little gluten.
It’s hidden in a lot of things and a tiny bit can make me sick for weeks.
I’m sorry but I can’t eat the “gluten-free” cookies you made me.
But I would be happy to teach you how to make your kitchen more safe for me if we’re going to be hanging out a lot.
Bringing my own food keeps me safe.
It has nothing to do with being picky or snobby. Believe me, I wish I could just eat whatever I want.
Eating out is hard for me, but I still want to be invited.
I want to be part of the group! If you truly want to make sure I can participate in the meal, I can teach you some questions to ask before deciding on a restaurant. But please don’t exclude me because of my gluten-free diet.
Gluten-Free ≠ Vegan
I’m not sure where this misconception stems from, but gluten-free means avoiding wheat, barley, rye, and contaminated oats. Vegan means avoiding all animal products. Just because something is vegan doesn’t mean it’s safe for me.
Celiac disease doesn’t have a cure, and there is no medicine I can take to treat it.
My only treatment is to eat gluten-free for the rest of my life.
I’m not trying to be difficult.
Speaking up for myself, reading labels, asking questions…honestly, it’s all exhausting and sometimes even embarrassing. I’m doing what I need to do to stay healthy, not to be a pain or to seek attention.
Just because I can’t eat gluten doesn’t mean my diet is boring.
There is so much delicious food I can eat. Fruits, vegetables, potatoes, rice, meat, beans, gluten-free grains, ice cream, wine, cheese…don’t feel sorry for me!
Did I miss anything? Feel free to comment below to fill in the blank.
What I wish people knew about celiac disease is ___________.
