In honor of Celiac Awareness Month I wanted to talk about the challenges of living with someone with celiac. As I don’t think I’m particularly difficult to live with, I hit up my family for the truth. After seven years I consider them fully knowledgeable on all things celiac and gluten-free. They also love me (for some reason) and have willingly adapted their lifestyle to accommodate my health. But I can’t say they don’t have a “gluten party” when I’m not home ;)
I should note that along with a sensitive stomach I’m a picky eater in general. I asked them to separate that from celiac for the purposes of this post.
The core four.
What was your initial reaction to my celiac diagnosis?
Mom: I was the most sad. I cried because the first thought I had was that you couldn’t just go out for pizza (and eventually beer) with your friends. And then I cried again because you couldn’t have communion.
Dad: I was relieved that the doctors found out what was making you sick. To me, the celiac diagnosis meant you would feel better, and that was good.
Olivia (17): I was 10 years old so I didn’t understand how serious it was but I could understand that celiac meant no more Life cereal or Eggo waffles. So that was sad to me at the time.
How did the diagnosis effect you?
Mom: I threw away everything in our pantry and refrigerator, even things that were possibly safe. I just wanted to start fresh. I had to adjust my cooking and it was kind of eye-opening. It made me look at what I was eating (and feeding the family) and I realized that “oh I do feel better when I’m not eating three slices of pizza three times a week.”
Dad: Being in the hospitality industry the people I work with didn’t think celiac was a big deal at the time. But I immediately thought of cross-contamination and set up protocols to prevent that. No one understood celiac but your diagnosis made me understand it a lot better and work to make sure everyone knew about it.
What’s the most annoying thing about living with someone with celiac?
Olivia: Uh, where do I begin? Just kidding…it used to be “all about Emily” and as a 10-year-old I didn’t like that. It’s annoying to always clean up the crumbs and Lysol immediately, I like to bake.
What’s the most challenging thing about living with someone with celiac?
Mom: Traveling.
Dad: Traveling.
Olivia: Having to pick a restaurant based on if you can eat there or not.
Dining in Capri, Italy. We called ahead and it turned out fine…not always the case!
We’ve all tried new foods in the past seven years. What foods do you now like that you didn’t before?
Mom: Quinoa, almond milk, spaghetti squash. We also eat a lot more fish now.
Dad: Spaghetti squash. I still hate quinoa.
Olivia: Sushi. For the first year or so you wanted to go to a sushi restaurant every week and I hated it. But now it’s my favorite food.
Anything else you’d like to add?
Dad: There are so many gluten-free products and options, but it still is a little difficult eating at restaurants. Those that don’t have gluten-free menus.
Olivia: A little funny story…Emily, if you didn’t know, is addicted to watermelon and a few years ago at dinner she wouldn’t share a piece. She had a huge bowl and wouldn’t share. So I took my piece of pizza and placed it on top of the watermelon so she couldn’t eat it anymore. I don’t think we spoke for the rest of the night.
Emily: I don’t think we did either. But that is a good tactic to get my attention…and annoy the hell out of me ;)
I didn’t know much about Celiac’s besides that I knew from working in food service, so thanks for sharing! I can’t believe the put pizza on your watermelon. That is awful! Now that you’re on your own most of the year you can hog all that watermelon :P
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Haha she threatens to do it again sometimes! I’m (a little) better at sharing now.
Going dairy-free has opened me up to a ton of new foods that I don’t think I would have tried if it were not for stopping my consumption of dairy. I don’t think I ever would have tried almond milk and now it is a grocery list staple for me! Although not being able to eat certain foods is difficult, I think the positive is that it has expanded my palate over the years.
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Yes, almond milk is a staple in my house too!
I love this! Your family seems so great and accommodating. That must be really helpful for you, and you’re lucky to have such supportive parents (and a funny little sister!) I’ve recently started to cut down the amount of gluten I eat because I realized it upsets my stomach and makes me break out. The only thing I’m struggling with is cutting out beer!
While I’ve never had regular beer (I was in 8th grade when I was diagnosed so I hadn’t tried alcohol yet :)), I’m told GF beer isn’t too bad. But yeah that’s a source of gluten that most people don’t think about.
Your little sister is too funny! Plus, she has the best name ;)
And I love this post idea! Your family is so great to try to work around your special food needs when traveling and eating out :)
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Sometimes I forget how much they have given up and/or adjusted to accommodate me. I’m really lucky. Thinking about GF options has become second nature for them when considering a restaurant!
This is SUCH a cute post! I love your family and I don’t even know them hahaha
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I think our families would get along great :)
Omg! Haha watermelon cruelty! Hahaha :P
Traveling is the hardest for sure. Thankfully we just don’t ever travel and when I was forced to go out to eat, I would be the weirdo bringing my own food. I know I embarrassed my family, but I had to be safe. Now that my mom knows she has Celiac too, we are in it together!
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I really love traveling and seeing new places so I don’t want to let having celiac stop me. But it’s so much easier when we go places like NYC that have TONS of options!
Hahah I laughed out loud with your watermelon story. I mean, a but cruel, but I guess it was effective ;). Thanks for sharing more insight about celiacs! I have an uncle who lives with it and it’s interesting to here more about how living with it it like.
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It’s been a few years since the “watermelon incident” (as I refer to it) and she’s still proud of herself haha :)
This was so interesting! Neat idea for a post :) it’s great that your family is so supportive. I bet a lot of people underestimate how much it affects you all.
It’s so sweet what your Dad said about being happy that the doctors found what was making you sick, and the fact that you’d be getting better. =) xo
Emily @ Sweets and Beets recently posted…Trader Joe’s Grand Opening in Downtown Austin
At first, people really downplayed celiac but it has gotten better. At least now when I say “celiac” instead of “gluten allergy” people pay more attention.
I laughed out loud at the pizza on the watermelon part. Sounds like a classic little sister move ;)
This post was such a cool idea! I dated a guy for a while who had a severe nut allergy and it was so eye opening. Any time he came over we’d scour the kitchen and he was always slightly nervous eating out at new places (understandably)
Great post!
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Nut allergies are so scary because one mistake can be life threatening. I’m thankful that eating gluten doesn’t cause me to go into an anaphylactic shock.
love this !
Dealing with the family is hard ! Its great that they are supportive and i have a little sister who at the time probably would have done the same thing had we known i had celiac ! i actually haven’t told a decent amount of my family (for me its the right call since some would not be very supportive plus for me its a private health issue and none of their business) but my boyfriend is very supportive. It was really hard at first though and i think he didnt know how to support me and h*ll i didnt know what to tell him ! I agree traveling is hard and i always tell people more than any 1 food in particular i miss the spontaneity and ability to just go anywhere to eat and not to plan. Before i had celiac (well i dont know did i always “have” it but didnt know it) i had no idea how wonderful it is to not plan what and where you will eat. to just show up and thanksgiving and eat anything or to go on vacation and duck into any place you want.
I have tried some new foods due to celiac but really what i learned was more how to cook all the foods i wanted. Its wonderful your dad is educating people at his work. whenever i go someplace and explain i have celiac and the person says “oh wait….my X relative has that i totally get it” i feel such a sense of relief ! spreading the word on cross contamination benefits all food intolerant/allergic people. i think that’s the hardest part to get across to people sometimes. and i get it i truly do. I’m literally still laughing at your little sister. there is no way i am showing this to my sister it will give her ideas !
Ah, yes. I miss the spontaneity! I always have to go places with food and/or call ahead and make arrangements. Even if I’m going to a family member’s house. That part is a hassle. I let out a huge sigh of relief when my waiter at a restaurant knows what I’m talking about and can sympathize.
I laughed out loud about your Dad still disliking quinoa. My Mom despises it and refuses to eat it. You should see the faces she makes and she likes to pronounce it Quizznos. LOL…Thanks for sharing this!
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Yeah he can’t really pronounce quinoa correctly either ;) He’s funny saying “kombucha” too.
This is such an interesting post, Emily! My two older brothers used to work for The Gluten Intolerance Group of North America, and their boss (who was also a friend of ours) was celiac. I learned a lot about celiac and the difference between it and gluten intolerance. But I loved how you gave us a peek into real life with a celiac family member. :) Great idea! It seems like you awesome family!
My sister is reactive to almonds, peanuts, dairy, and eggs (and sometimes soy), but she is not severely allergic to them. Still, it it can be challenging to find healthy recipes that exclude all those things (especially breakfasts!).
I think maybe avocados win the food I’ve tried recently that I just love…although, that would depend on how you define “recent”. :P I think I started eating them sometime in the last year or two. :D I tried beets for the first time last night, and liked them, but I can’t say I just love them, at least, not yet. :D
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I’ve never heard of that organization. I’m going to look into it now! I eat at least a full avocado a day :) I only have beets when they are on salads at restaurants but I’ve liked them every time.
The watermelon story was funny, but I think I laughed the most at your parents’ reactions! I understand why your mom was upset, but it’s funny your dad had the opposite reaction – I think my parents would probably be the same way. Traveling abroad seems like it would be really challenging.
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When we went abroad we had to go on a cruise that could accommodate GF, rather than just tour Europe ourselves. I ate 75% of my meals on the ship and then a handful of lunches when we docked.
Great to hear about some of the realities of living with celiac. My cousin was diagnosed with celiac disease when we were little and I remember it was so hard for him because he couldn’t really understand why he couldn’t eat certain things that his siblings could eat. It’s so important to take it seriously!
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This is super interesting. You often don’t think about how much your own needs effect those that you live with/spend time with. It’s awesome your fam is so supportive (except for the pizza incident ;) )
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LOVE this! I think the hardest thing is when people invite you over for dinner! I HATE being complicated and I think it can be so complicated at times!! I know I shouldn’t feel guilty/high maintenance, but at times I just do!
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