10 things I wish my friends and family would understand about my Celiac Disease.

When it comes to Celiac Disease no one likes it. Not the people who have it, or the people who love the people who have it. It’s SO hard. It complicates life and deprives us of delicious foods and wonderful social experiences that most people take for granted. I remember when I was first diagnosed and I felt like my life was over, and while my family was extremely supportive, many of my friends were not. They just didn’t GET IT!

I wished I could scream and shake some of them sometimes, but it occurred to me that it’s not that they didn’t want to understand, it’s that it’s hard to empathize with something that is so foreign to you. So for myself, and for all my fellow Celiac friends here’s a list of things I wish other’s would understand.

1.Gluten Free diet is not a choice for me, it’s a method of SURVIVAL

A lot of times when I make a new friend and I tell them I eat gluten-free they respond with. “Oh yah I did that diet for awhile I lost like 10 pounds.” Or if I am out to eat and a food server says, “Sorry we can’t accommodate those sorts of dietary CHOICES here.” (Cue RAGE).

For people with Celiac Disease eating gluten means knowingly choosing to allow your body to attack itself. It means choosing to be sick for days, choosing to have your hair fall out, or to develop painful itchy rashes, it means vomiting and diarrhea, and late nights sitting on the toilet miserable it means choosing a 30% increased risk of Cancer!

So yah- I guess if I want any of those things, it’s a choice.

2. No, I don’t want to share my snacks with you.

Ok, this is not entirely true, I don’t mind sharing snacks actually. I love showing people how yummy it can be to eat gluten-free, because if they like it then they will eat with me, and there is nothing like sharing a meal with the people you care about!

BUT I hate it when people get into my gluten-free snacks without asking. I also hate when there is LOADS of regular food but very little gluten-free foods around and I am eating a meal I purchased and brought for myself so I could actually eat something and someone asks to try some. It’s not that I don’t want to share, it’s that I don’t have ANYTHING ELSE TO EAT! Also, gluten-free snacks are EXPENSIVE. A good way to gauge if a GF person is cool with sharing their snacks is instead to ask “How do those taste?” or “Do they taste similar to (insert comparable food).” This gives the GF person an opportunity to offer to let you try if they’re up for it, or to describe it to you and politely say- “I would offer you some but I can’t eat anything else here and I am starving.”

3. Don’t tease me with your gluten-full foods.

This happened a lot when I was younger/ to my sister who was diagnosed in childhood with Celiac. (I was not diagnosed until I was 19)

Eating something like a Pizza or a piece of cake in front of a Celiac person and saying things like “MMM this is so good, too bad you can’t have any of it.” Is just a jerk move. To give some perspective, to someone in the Celiac community this act is akin to making fun of someone in a wheelchair for not being able to walk. Yah we know your regular pizza is good! STOP RUBBING IT IN!

4. Don’t invite me to a dinner party and have NOTHING to offer me to eat.

This is always awkward. If I have told you I have Celiac disease please don’t serve only gluten-full things.

Also if you have Celiac make sure when you’re invited to the dinner party that you make your host aware of your dietary needs and offer to bring something. I almost always offer to bring food (and usually bring at least two dishes to share).

5. If you go out of your way to prepare me gluten-free foods, don’t put them on the same plate as the bread.

This is something that happens to me a lot, and it’s almost always on accident. But nothing makes you (the other party) and I feel worse than when you go to a bunch of trouble to make me food and then put it on the same plate or cutting board as your non-gluten-free food. It’s hard to remember especially if you’re not used to it, but when my GF garlic bread that you have lovingly slaved over touches the crumbs of that regular garlic bread you made I can no longer partake in or appreciate your efforts. It’s sad for everyone.

My aunt Banana (first of all I just sang Hollaback Girl to spell that word, second of all no, her name isn’t Banana, it’s Nancy) is really great at preventing cross contamination. She’s a badass cook and she ALWAYS makes sure I have stuff to eat. She always preps my GF food first with clean tools on a separate counter and then leaves my food in a separate area (like the kitchen counter) and puts regular food on the table or island so it’s distinctly separate. I love her for it, and it’s actually just a practical way to prevent cross contamination.

6. Don’t make food recommendations for things you know I can’t eat.

This is something that happens a lot. Especially because of the work I do writing about food. I can’t tell you how many times someone has said something like, “Oh my gosh, we went to this amazing Bakery on 4th street and they have incredible bread!”

Or “Oh you might be interested in this, I went to such and such a restaurant and they just have the best pies.”

If you know I can’t eat food, but you had an amazing gluten experience I just prefer you don’t share it with me. I have people do this all the time. They’re excited about an experience they had and in an effort to connect with me they try and talk to me about it.

“Well I know you can’t have it, but maybe they have some stuff you can eat too! You should check, I mean their pies are so good.”

This person is always coming from a good place but for people like me with Celiac statements like this makes me/us SO SAD. It’s not that I am not happy that you found a food experience that you enjoyed. I am, it’s just that in going on and on about how amazing it was you’ve reminded me of something I will never experience. I also can’t say “Oh that sounds so good.” because to me it sounds like poison, and then I am sad I can’t join you in your excitement. It isolates me, and while it comes from a place of trying to relate to me, and share what would normally be a regular social exchange it hurts our relationship.

Instead, maybe look up some gluten-free places, or check the menu at your favorite restaurant to see if they are Celiac or gluten-free friendly! Then tell me about the meal you had and add, “they also had a lot of gluten-free options! I asked and they said that it’s safe for people with Celiac Disease!” That allows me to join you in excitement rather than having to disengage or change the subject.

7. If you are at a party, don’t put your crackers in the communal dipping bowl.

I was at an event for Travel Massive earlier this week. (It’s an AMAZING organization and if you want to connect with other travel writers or people in this industry it is the place to be!) They actually had a lot of gluten-free food options including a favorite of mine, chips, and Guac! After the discussion panel, I was planning to grab some and schmooze a bit with folks when I watched a guy at the event walk up, grab a cracker, take a scoop of guacamole and plop it on his plate (there was a serving spoon available). There went my food safety, no guac for me!

If you are having an event consider placing tongs in the chip bowl and place signs on the shared dips or offer a separate dip for food allergies and or restrictions that you keep in a separate area. If you are at an event where there is a shared food experience offered, please be considerate of those who may not be able to eat everything you eat. Use serving utensils to grab your food and don’t use food/ your hands to scoop up dips and sauces. It’s kind of gross, but it also ruins the food for people like me.

8. Check ingredients on your seasonings if you are preparing gluten-free foods.

While I think you should make your own seasonings because I like being a food scientist sometimes it’s just easier to buy one at the store! I get it, we are busy people. But I can’t tell you how many times I’ve been to a BBQ and got glutened by food that should have been gluten-free. There’s sneaky gluten in most processed foods if you are making something gluten free and adding a seasoning packet of any kind CHECK IT!

9. Salad is not a substitute for pizza.

You know what is lame? When everyone is eating pizza and you offer me a limp leaf lettuce side salad.

SO MANY places make GF pizza now, and it’s not very expensive (you can get a take and bake Gluten Free Pizza at most grocery stores). If you are planning pizza for an office party or for a birthday let your Celiac friend know in advance and ask what type of GF pizza brand they like from the store and just bake it while you’re waiting for the other stuff to be delivered. But don’t pretend like you thought of me by offering me a salad. It’s offensive. There I said it.

10. If you make a mistake I love you anyways.

If you’re reading this and someone in your life has Celiac and you are cringing right now because you’ve done one or several of these things, know that they probably still love you. I know I love all my family and friends even if they mess up. We’re not perfect and this disease is hard to navigate.

Celiac disease is really hard, the fact that you are reading this right now shows you care. That’s like 90% of the battle. The rest is education and you will learn with time. I encourage you to ask the Celiac person in your life about their condition and how you can make them feel more included. They will love you for it.

Also if you want more information on Celiac Disease, and tips on how to navigate a world full of gluten click here to sign up for my email list! (Located on the right-hand side of the Home Page.)

3 thoughts on “10 things I wish my friends and family would understand about my Celiac Disease.”

  1. Sorcha, you did a great job of educating folks about Celiac disease. A good friend shared her struggles with me-she had a good 20 years of misery until she found a savvy doc who really listened. Too many people have done GF as a fad, but for those with Celiac it is survival! I’m grateful for your post and if I ever have the pleasure of having you in our home, I’ll be careful to make sure that you have what you need, and hopefully it will be yummy as well as healthy for everyone 😊❤️

  2. UGH YES YES YES YES!!! Sometimes us Celiacs gotta starve when we are in those crazy situations. It’s all happened to me. I try my best to educate others kindly as I go, but seriously it’s so frustrating. I had a teenager eat bread and rub it in my face one day and I had to sternly tell her that I do not care about her bread nor the attitude!

    Love your blog! Now following it. Thank you for being an advocate for us!!

    • I am so glad this resonated with you! Also thank you so much for following! It means a lot to me! If you want to stay updated on my posts I have an email list make sure you sign up for that! I also occasionally send special discount codes and freebies to my email list! Sooo check it ouuuut. 😀 (located to right hand side of home page)

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