May is Celiac Awareness Month- and I’m happy to share a little bit more about it, because two of the people I love the most happen to have Celiac Disease.
To start, Let’s talk a little bit more about what Celiac Disease is: Celiac Disease is an Auto-Immune disorder in which Gluten (a protein found in wheat, rye and barley), causes an immune attack on that damages the small intestines. When the intestines, and the villi that line them get attacked, the body can no longer properly absorb nutrients (and a whole bunch of other side effects go along with it.) Currently, the only treatment for Celiac Disease is lifelong adherence to a strict gluten-free diet. Ingesting even small amounts of gluten, like crumbs from a cutting board or toaster, can trigger small intestine damage.. so not only does everything have to be gluten-free, it must also be made/processed/packaged in a gluten-free facility as well.
My son, Hudson, first got diagnosed with Celiac at 18 months. He went from being the happiest, chubbiest baby: to a non-walking, non-talking shell of a boy in a few months.
My daughter got tested shortly after, and was found to have Celiac as well. Their Celiac presents in different ways: If my son gets “glutened” – He gets lethargic, throws up almost immediately, and usually breaks out into a rash within the next few days. If my daughter does, she usually gets headaches and acts a bit more moody within the next few days.
Their diagnosis wasn’t the end of the world, and considering some of the other options that were being tossed out, ended up being quite a relief. It does come with some considerable hurdles and stress as both the person to have it, and as a parent.
- Food events become much more stressful: Weddings, School lunches, birthday parties, dining out. traveling. Any sort of eating outside of your home is putting trust into someone else’s hands that they understand what a simple crumb can do to your children, and that’s terrifying. And then there’s the guilt that comes along with when they do get contaminated out and about, and what you could have done to prevent it.
- Our relationship with food has changed. It’s not uncommon for the kids to have a bad experience with food or get accidently contaminated, and for them to develop fear over trying that food, or any new food again. There is a lot more communication over getting them to eat things that should be simple.
- Gluten-free food is EXPENSIVE. The joke in our house is Triple the price, half the taste. (Although GF food is coming around, more on that later!)
If you or someone you know is dealing with a new Celiac Diagnosis, it can be extremely overwhelming to process. I want you to know it gets better, and it’s all going to be okay. Some things that were really helpful for me when we first got diagnosed were:
- Finding a mentor, support group, or someone to go to with questions. I had a good friend who I was able to ask all of my (many) questions to, and it helped SO much in the beginning to have someone to guide you. If you don’t know someone personally, Facebook has an array of groups to join for Questions ( Celiac Mankato – Gluten Free Support Group, Celiac Disease-Gluten Free Support Group, and Celiac Mama is a good place to start) You can also search “Celiac” on instagram and find so many amazing accounts with tips, advice, receipes, etc.
- Find a local dietitian and do a walk-through at the grocery store to show you where your essentials are going to be.
- Finding replacement food staples are so important to getting back to “normal” Here are some of our favorites”
Cheerios and Chex are both gluten free. We also like the Katz Gluten Free Donuts
Lunch & Dinner
Kraft Gluten Free Mac N’ Cheese, Tyson Gluten Free Chicken Nuggets/ Strips, Ore Ida Tator Tots/Fries, Freschetta’s Gluten Free Pizza, Canyon Bread and Bagels
Annies Gluten Free Bars, Snack Factory Pretzel Crisps, Veggie Sticks, Nut thins, * Most Popcorn, etc.
For dining out, we have narrowed it down to a few favorites. As always, make sure to specify that it’s celiac disease and not a diet choice when ordering ( so they take proper precautions)
-Chipotle- Most things other than the shells are GF here
-Noodles and company (GF Mac & Cheese is the bomb!)
-Five Guys- Burger or Hot dog without buns, fries are GF
WYSIWYG- Gluten Free Zone, everything is safe!
-Wooden Spoon- Our go-to for GF Cupcakes, Muffins, Cookies, etc.
Jakes Pizza- They have a separate GF Kitchen and we have never had an issues with the Pizza here, plus it’s delicious!
Gluten-Free foods, and lifestyle options, have come a long way, and will continue to as more and more people get diagnosed. But if someone close to you is struggling with a new Celiac Diagnosis, their world just changed in a big way. The best thing you can do for them is to be supportive, acknowledge the seriousness of what they are going through, and offer a listening ear when they need to vent.