Celiac Stories: Little things that make all the difference!

A celiac disease diagnosis can make you feel a wide range of emotions. I was happy I didn’t have cancer or Crohn’s (two suspected diseases!), but I grew up on a diet of pasta, pasta, and more pasta (Italian American through and through). The thing I worried about the most wasn’t having to replace my favorite foods, but rather the fear of being treated differently as an outsider. As scary as that was, I didn’t have to worry for long. I had my mom, my boyfriend (now husband), my best friend, and a whole group of friends who were incredibly supportive and never made me feel left out.

When I got home from the hospital after being diagnosed with celiac disease, my best friend, Lauren, was waiting at my apartment with gluten free brownies, cookies, and cupcakes. An avid baker, Lauren started tearing up the kitchen and went to the store to get all gluten free ingredients. She taught herself about cross contact, how to read labels, and keeping baking supplies completely separate. That was 7 years ago…and to this day, she still bakes for me, cooks for me, and finds ways to sneak sweet treats into my life, even being across the country from me. My mom also finds any excuse to try a new recipe, used to cook me several meals to freeze and eat later when I was in grad school, bought me a separate toaster, stands up to random strangers when they joke about gluten free, and makes homemade gluten free “oreo” surprise to have on hand in the freezer at all times so I can always have dessert. My husband cooks entirely gluten free for us, picks out safe places on our vacations, eats gluten free on date nights so he can kiss me, and lets me choose date night dinner spots.

lauren
My best friend, Lauren, making gluten free biscuits for me for Thanksgiving ❤ We had a gluten free vegetarian Thanksgiving with my family junior & senior year of college

None of these are necessarily huge grand gestures, but they can make all the difference in someone’s life who has celiac disease. These little moments made me feel special, included, and not a burden. They made me feel normal, showing that my disease didn’t have to change my life negatively.

If you have celiac disease, hopefully this will remind you of the happy times (and make you smile!) and give ideas for how others could include you—simple ways that are easy to incorporate like “hey guys! I found this really cool restaurant. Can we eat there?” knowing that you have safe options. Also remembering what it was like when you were first diagnosed and using your happier experience to help others with celiac disease.

If you are reading this and don’t have celiac disease, you probably know or will know someone with it at some point (1 in 100 people!). Maybe you have a child, friend, spouse, sibling, parent, etc who has celiac and you want to know what you can do to make their lives happier. Here are some ideas for how to include them and make them feel welcomed and safe. Most ideas don’t require a ton of money, time, or effort. Just the thought alone, recognizing that they do have a serious autoimmune disease, and showing empathy and kindness. That’s all. ❤

I turned to the phenomenal celiac community for their stories to share. Here we go! (Grab some tissues….)

“I’m so incredibly lucky to have in-laws who go out of their way to make sure that I eat safely. They go as far as to not cook with any gluten containing food in their home so that I can eat there safely. They bought all new condiments that are strictly for my use, and even replaced their cookware. When they cook, and are buying a new ingredient, I get pictures of the ingredients texted to me before they buy it, just to make sure it’s safe for me to eat. When we go out to eat, it’s always at a place that I am comfortable eating at, and they advocate for me when needed. I am truly lucky to have them.” Michelle’s Gluten Free Kitchen (@HeartofHearth)

“I always get to choose the restaurant! My friends are really understanding” Adele (@glutenfreeadele)

“[My husband] eats gluten free with me so he can kiss me after our dinner dates. Supports our kitchen being 100% GF and eats gluten at work or when he goes out with friends. My [mother-in-law] bought me all new pots and spatulas to be designated GF and used only when I visit. My mom bakes me GF cupcakes when I visit for a wedding so I can eat too. My dad sends me pictures of newspaper articles when a new 100% GF restaurant opens up in town. My sister works in a restaurant and since my diagnosis has been constantly advocating for the celiac community by having discussions with her coworkers about cross contact.” Jessica Hanson of Tasty Meditation (@tastymeditation).

“My 22 month old daughter was diagnosed with celiac at 18 months.   We were invited to a play date for my 4 year daughter last week, and the mom bought Lou Malnati’s gluten free pizza so my 22 month old felt included in the play date.   It was very heartwarming.” Lisa F. (@LisaFish12)

“There are 3 of us in my family with coeliac disease so there is great understanding about gluten and cross contamination. My friends are amazing always check with me that I’m happy with restaurant choices. My work colleagues are the best, any special occasion I always find Cakes . with Coeliac UK who have fantastic resources, a few of my family have down loaded their app so we can eat together safely” Sarah Edwards (@SarahEd21939578)

“All our extended family buffets for everyone’s birthdays etc are now completely gluten free so we don’t have to worry about contamination” Gluternative-Gluten Free (@gluternative)

“I am somebody who hates to be the reason why adjustments are made. One of my best friends from childhood knows that, and often pushes our larger group of friends to go to restaurants that she knows have more options for me, without explicitly mentioning that’s the reason. It’s a small but really valued gesture, as it sometimes takes the pressure off of having to speak up” Sarah Izzo

“After patchy experiences with Pre-School, my son’s Primary School teachers have largely sought to make cooking gluten free, using gluten free ingredients class wide. The first time it happened I did in fact cry a little, out of gratitude. Small things make a big difference.” @enonamouse

“Last year, when planning a trip to Singapore, I reached out to Karen Horan of the Singapore celiac group. Karen gave me a bunch of tips on where to eat gluten-free in Singapore. Then, she went above and beyond by inviting me to her home in Singapore to make gluten-free dumplings. I met a wonderful group of gluten-free women during this evening. It made me realize we have a truly global celiac community” Erin Smith (@gfglobetrotter, https://glutenfree.sg/ )

“The majority of my immediate family has celiac or a sensitivity. So we figured out how to make all the family favorite foods GF, so that we can all enjoy dinners together without worrying about cross contamination! Now all family dinners are GF. Even extended fam ones!” Mish-Elle (@MishElleSC)

“When I was on Top Chef Jr they took great care of me! The culinary team made sure I had gluten free food to work with and the amazing crew always made sure I had gluten free lunches on set. The other kid chefs were very sweet and sensitive to what I needed to be safe.” Chef Audrey B

“I always get to choose where we eat, my brother always offers me some of his food first, my Granny always buys me food that she sees is gf. My Granny told me that we were the same as trout – cannot eat gluten! (my Grandad really doesn’t properly understand but that’s okay, he’s 81)” Jenni glutenandme (@glutenandme24)

“My husband, kids, and the aunt & uncle we travel with a lot let me pick all restaurants, and we keep an almost 100% gluten free household. Occasionally I allow the kids to buy gluten-filled treats like ice cream bars or ice cream sandwiches. The chefs at our school make me safe, delicious dinners 5 nights a week during the school year when our boarding students are on campus. I am so grateful not to have to cook during the work/school week. A coworker who I did not even know that well made gluten free sausage and cheese balls with GF Bisquick for a work potluck so I would be able to eat them.” Alexis Salerno (@Alexis_GF_Adv)

“This may sound funny, but I do think in general I’m happier with Celiac. There are lots of firsts (cream puffs anyone) are so much more exciting for me than for the average joe. My family shares in my joy at each of these new finds.” Merrie McGaw (@merrie-mcgaw)

“My stepdad, the cook in our family, did his own research about celiac and makes sure when he’s cooking for me everything is safe. It’s so refreshing. Plus when we travel as a family he and my Mom will defer to me to pick places for meals. It’s so nice to feel accepted.” Christine Smith (@cmarysmith)

[In reference to his wife] “You insisted I go to the doctor after a year of complaining about stomach pain. The diagnosis of celiac disease totally upended our world. Instead of letting it overwhelm you, you were laser-focused on learning what we needed to do “together” to keep me healthy. Celiac was not my disease…it was our disease.” Gluten Dude (@glutendude, you can read his full post about his amazing wife here

“My co-workers are amazing and always think about me when bringing treats or food. Even if I can’t have what they get they will go buy me something I can have. Today I got to try a gf lemon pound cake. Delicious. The bad thing is all the treats they bring me” April (@tinnytiamaria)

“My friends and I just went to Chicago and a couple other friends met us there and they went out of their way to make sure I could eat safely! Research, no problems eating anywhere I wanted. It was amazing and such a relief.” Angela (@angerawrrrr). To which her friend replied, “Psh, it was either accommodate your medical condition or let you die for my own convenience. Easy choice!”  Randi Shaffer (@RandiMShaffer)

“As a school administrator, I have to attend many special events that revolve around meals. Two people at my school (the Administrative Assistant to the Head of School and the Director of Parent and Alumni Programs) always look out for me and picked up on the “Celiac safe” language (vs. gluten free). It is such a relief to know someone else knows the questions to ask and is making events that include food less stressful for me.  Our Head of School loves to cook for people. When she invited the senior admin team over for dinner the first time she set up a 20-minute meeting with me ahead of time so she could learn about what she would need to do to cook safely for me. It is nice to feel supported at work.” Kimberly Clarkson (@ClarksonMFS)

“My fondest memories are of my Nonna learning to make me my very own gluten free arancini (rice balls). My friends actually took me this year for my 32nd birthday to a gluten free certified restaurant and they inhaled the dessert platter!” Ashley Michelle (@celiacandthe6ix)

“I teared up when my friend went completely out of her way to run every activity & food past me. She made sure everything was sealed & that Addison got served first. I told her several times not to bother, I didn’t want to be a burden. We are very used to bringing our own food to parties. My friend insisted & said that’s what friends are for!” Celiac Kid Cooks (@Kaveets)

“When my daughter was diagnosed just 3 weeks before her 12th birthday we served a giant chocolate chip cookie with ice cream and choc. syrup in sub for her birthday cake. Ice cream pizza was a hit! (2005)” Dietary Dilemma (@Dietarydilemma)

Clearly there are a million different ways to include those with celiac and show you care. And clearly, these gestures no matter how “small” have lasting positive impacts in our lives. Food may be a common theme, but so is support and acceptance. As we continue raising celiac awareness throughout the year, I’m thankful for everyone who made my days better when I was diagnosed (and now). I’m thankful for my friends that I have met because of celiac disease. And I’m thankful that there are people in the world who care to make us feel included, not excluded, due to an autoimmune disease beyond our control. For every negative comment I hear about gluten free, I think back to the list of these wonderful positive experiences and that makes all the difference. ❤

Thank you to everyone who shared their stories! Love to you all.

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3 thoughts on “Celiac Stories: Little things that make all the difference!

  1. As someone who was recently diagnosed with celiac disease (and then found out 2 weeks later I was pregnant), this just makes me all the more sad at the lack of support I have in my community and family/friend group.
    I’m so glad to know other people are getting the recognition and help/support they need, but in the meantime I’m terrified about how I’m going to make it through this, especially when I still get glutened 1-2x/week.
    I’ve turned into someone non-spontaneous, and can’t even easily visit some of my family because they live in a tiny town with no grocery store within several hours. Is there a place for those of us who don’t have anyone else out there?

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    1. I’m so sorry to hear this and I’m sorry you do not have support. In my experience, Celiac gets easier with time and knowledge. I was asking the wrong questions at first and was always getting sick. I didn’t realize that a shared fryer or colander would get me sick. I took labeling as law and didn’t question it. Overtime i realized what i needed to do to stay healthy. I saw a celiac specialist who made sure to closely monitor my health—which I definitely recommend. Not all of my friends or family understood–it took a lot of explaining, education, and patience. For most of them, it didn’t happen overnight. I found that most wanted to be supportive, but just didn’t know how (hence one of my motivations for writing this post! To hopefully help others! 🙂 )

      Is there a celiac support group in your area? .

      As for lack of safe food options…A lot of my family lives in an isolated area where processed gluten free foods aren’t available. fresh, naturally gluten free foods are the way to go—meats, veggies, eggs, the options are endless and super easy:) for packaged foods, try amazon for delivery. many amazing gluten free brands are on there. avoid chain restaurants and fast food—most are full of cross contact.

      I hope that the celiac journey gets easier ❤

      Like

  2. Unfortunately, the first year is the hardest as there is a huge learning curve. There are so many hidden hiding places for gluten! (Like who would guess they can’t lick stamp a stamp or envelope without getting sick!)

    If you don’t have a lot of support at home, you may want to consider joining a local celiac support group in your area. They may be able to help you with your grocery shopping list, find restaurants you can eat at near you, and ways to talk to your family about what you can and can’t eat. And maybe you could find some other people with Celiac to be spontaneous with. If everyone is gluten-free it’s much less likely you’d be glutened. There’s a list of different organizations that offer support groups here. https://www.beyondceliac.org/celiac-disease/additional-information/support-groups/

    Or, maybe you want to invite your family to join an online support group with you. You can learn together and they will come to understand how important it is to be sure you stick to your diet. aBut even if they learn, still be cautious and ask tons if questions. When people don’t live with it every day they forget.

    To be sure I don’t get glutened when visiting family or friends, I always, always bring a dish to share that I know I can eat and is not contaminated. And if someone has hurt feelings you didn’t eat what they made? Well… you can let them know how much you appreciate their time and effort. But their feelings are not your responsibility or your job to manage.

    The worst for me early on was visiting my brother who like to make homemade bread. Every time he hosted a family gathering, he would make fresh bread and there would be flour dust everywhere in his entire house. It didn’t matter what I brought or what I ate. I would leave sick just from inhaling the fine dust. It wasn’t like he had a dirty house or there was this big flower cloud when you walked in the house. It’s just a thing that happens when you cook with flour. After a while I learned and started to decline invitations to his home if he was planning to make bread at any time in the days before I was coming over.

    Another idea is to meet family and friends at restaurants that you know are Celiac friendly. I recommend always calling ahead though and asking to confirm that the information you find online is correct. You can find restaurants in your area here. https://nationalceliac.org/gluten-free-restaurants/

    When you go to a restaurant, always tell them that you have celiac. Ask your server questions to make sure that they’ve been trained and understand. Early on in my diagnosis I went to a restaurant and asked if the item I intended to order was gluten-free. The server looked confused so I asked if there was any oats, barley, rye or wheat flour in the food.
    She said no but when it came back it was obviously breaded. I spoke up and she explained that that wasn’t wheat flour. It was just regular white flour on my food. (….. That would be from wheat. Doh….)

    But restaurantss can also surprise you. For example Outback steakhouse has a gluten-free pecan brownie with ice cream and hot fudge topping call Chocolate thunder from down under. They don’t necessarily advertise its gluten free. But it is. I can walk into that restaurant and eat something that feels like a piece of cake. It is glorious.

    Anyway… Sorry to write a book. Good luck on your journey. I have no doubt that you’ll get where you’re supposed to be.

    Liked by 1 person

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