Are your friends supportive of celiac disease or do they make it harder? Tough question, I know. While the support of my close friends make it easier, the ignorance of newer or more casual friends can tie my tongue in knots and leave me struggling to find a response.
Here are 10 things I really wish my friends knew about celiac disease:
1. There is no such thing as “a little celiac”
Unless you catch me at a free catered event where I’m the only one with food I brought from home, I am very good at hiding my celiac disease. I live a relatively normal life, travel often, and have energy (most of the time)!
This leads to comments from friends about how lucky I am to be only “a little Celiac” because their friend / cousin / boyfriend / etc is “very celiac”.
I wish you knew that we are all the same! We have our own ways of coping, sensitivity levels and symptoms, but all of us are limited in the same way. Small traces of gluten are not safe for us, and we do all sorts of ridiculous things to avoid it!
2. I would rather join you for a food event than be left out, even if I can’t eat anything.
Food is great, but my connection with you is better. Please don’t leave me out of an event because you think I can’t eat anything.
I am very accustomed to bringing my own food and attending food events where I can’t eat anything… In fact, I’m an expert – I do it all the time since my diagnosis 8 years ago.
3. Unless we had a conversation, please don’t make me gluten-free food.
You are very sweet and I know you mean well, but there’s a good chance I can’t eat that. And now it’s awkward… Do I eat it because I like you and want to thank you for going through the trouble? In that case, I risk my health…
Or do I risk damaging our friendship by declining, or at best asking you a million questions about how you prepared it deflating your happy and generous bubble?
It’s a sticky situation for both of us. I very very very much appreciate your efforts. Next time, please talk to me first… or how about we cook together the first time?
4. Don’t knock gluten-free food until you try it.
This is a painful story to tell. I made a big batch of gluten-free chocolate chip cookies before an end-of-year work party. I stayed up late, used a tried and true recipe my non-gluten-free friends love, and was excited to contribute.
When we laid out the spread of goodies, NO ONE tried my cookies. One person even educated someone who was reaching for them with: “Sarah – those are the gluten-free ones.” She instantly pulled back with a disgusted “oh…”.
I left with the ENTIRE plate. It was a group of 8 people and I made over 20 cookies. I was mortified.
I brought the same cookies to a friend’s gathering later that evening and they were demolished quickly. I even got requests for the recipe.
I still have not contributed anything other than fresh fruit to that original group of people. A year later, I still feel humiliated when I think about it.
So please… before you decide it’s gross, at least give it a try?
Related: How to Persuade Anyone to Love Gluten-Free Food (this post was heavily motivated by the experience above)
5. I am not “lucky” to have celiac disease.
This one comes from friends who struggle to lose weight. I understand they’re frustrated, but I am not lucky to have a dietary restriction that “keeps me thin”. In fact, I’m not thin because I have a dietary restriction. I have the genes for it and I live a healthy and active life and my body reflects that.
If anyone has a good response to this one, please share it with me! The few times I heard this my jaw dropped and I spluttered something unintelligible about chronic illness…
6. “Gluten-Free” does not mean gluten-free enough for me.
Gluten-free options at restaurants are often not safe options for me. I am sensitive to crumbs of gluten and bits of flour, which can be anywhere in a kitchen. I can’t pick croutons off a salad – the leftover crumbs would make me very sick.
This brings me to my next point…
7. I only eat at celiac-friendly restaurants.
This is not a choice, it’s a necessity. I cannot tell if a restaurant is celiac-safe just by looking at the menu. I need to do research ahead of time, check one of my gluten-free apps, and ask the manager and chef some questions.
My favorite dining experiences are at 100% gluten-free restaurants or ones known for having celiac-safe practices.
8. There is more to gluten-free than avoiding bread and wheat flour.
Gluten is in wheat, barley, rye, and sometimes oats. These ingredients are added to soy sauce, salad dressings, natural and artificial flavors, alcoholic beverages, spices and more!
I really do need to ask questions about every part of my meal and read every label in the grocery store.
9. I don’t get sick right away if I eat something with gluten.
This varies from person to person. I get some minor symptoms fairly quickly after eating gluten but the real fireworks start 20 hours later like clockwork.
Please don’t nervously stare at me to see if I get sick during a meal…
10. I am not alone.
I may be the only person you know with celiac disease, but it’s a fairly common condition and I chat with gluten-free friends online every single day!
I need your support, I need their support, and learning more about celiac disease will help you be an awesome friend to me and your future celiac pals.
To any non-celiac friends reading this, you are so incredible for caring, for taking time to learn about our struggles, and for your unending support.
With love and gratitude,