As you may have read in my recent post, our sweet 15-year-old daughter was diagnosed with celiac disease earlier this summer.
This was news to us as no one else in our family has celiac that we know of. We have friends who are gluten-free, but we didn’t know much about the disease itself.
Thankfully, we’ve found a wealth of helpful information, so I figured I’d gather some of it here to help the next family who hears this diagnosis!
First, just know that it’s not as overwhelming or daunting as it seems. Our family has been gluten-free now for just over a month and while there have been some tough moments, overall it’s been far easier than I thought it would be. (I remember people telling me that at first and I didn’t believe them – but it’s really true!)
Here are some insights and observations I’ve gathered over the past four weeks since Z’s celiac diagnosis.
- It’s the ultimate show of love and support for your family member with celiac if the whole family adopts the gluten-free lifestyle, at least in the home. Certainly, it will make life a lot easier if there’s no gluten in the home. Otherwise, you would need two different toasters, cutting boards, butter sources, etc. You would never want to accidentally “gluten” your family member – think how bad you would feel! Gluten is essentially like poison to their body. E and I have both happily gone gluten-free to join Z on this journey, and even though we don’t have celiac, we both feel amazing. Going gluten-free will not hurt and may have health benefits you’re not expecting!
- When you go through your pantry and kitchen to get rid of all items with gluten, don’t forget breads, pastas, snacks, cereals and sauces. Many condiments have gluten added, so you’ll want to find replacements. So far, we’ve found good options to replace our old favorite soy sauce and teriyaki brands. We really like the iPhone app GF scanner which is a good addition to reading ingredient labels. It allows you to scan the barcode and find out if a product contains gluten. There are some foods which seem like they shouldn’t – like Kix corn-based cereal, which used to be considered GF but recently changed to “now has ingredients containing gluten” on the label. Jerks! There are other foods, like candy bars for example, which say “processed in a facility containing wheat.” This means the candy bar itself doesn’t have gluten ingredients, but it may have become contaminated with gluten (think of the way flour flies around and then settles everywhere – that is what I envision when I read that label).
- Cross-contamination is real. It only takes a tiny amount of gluten to “poison” your loved one and leave them feeling HORRIBLE. Once their symptoms start to subside and their gut heals, it will become very obvious if they accidentally get glutened; in Z’s case, those rare instances make her feel even worse than she originally did before her diagnosis. Eating out at restaurants is quite tricky and scary for this reason, unless you specifically seek out a restaurant that is known for being gluten-free or having a gluten-free area of their kitchen, such as Bibibop, Cameron Mitchell restaurants and a few others. We get a lot of great information from the Gluten Free Gang of Central Ohio on Facebook and CollegeCeliacKC on Instagram.
- There may be moments when your celiac family member “hits the wall” and/or has major cravings for their old favorite foods and snacks. The first two weeks of going gluten-free were super easy for all of us, because we were so committed to Z resolving her awful GI symptoms and feeling better. Then, when she started to feel a bit better, the realization hit her that celiac disease and eating this way are forever. It’s difficult to realize at the age of 15 that you can NEVER go back to some of your most favorite childhood foods and snacks because they are bad for you and hurt your body. There were a few tearful moments, but thankfully, they were far outweighed by how much better she is feeling and by the noticeable, favorable changes in her appearance.
- Keep trying and tasting new gluten-free foods until you find ones you love! While you may not be able to find the EXACT foods and snacks you once loved, you absolutely will find ones that you like and enjoy. The GF selection out there is amazing and getting better all the time! Be sure to try places like Whole Foods, Costco, Aldi, Meijer and even Amazon because many smaller gluten-free brands may not be at your local grocery store yet. We’ve found crackers, pasta, pretzels, pizza and Texas toast/garlic bread that are comparable to what we enjoyed before. We have not yet found bread that is as good as King’s Hawaiian buns or the soft rolls at Texas Roadhouse, or pizza that is as chewy and doughy as our old favorite Papa John’s, but we’re still on the lookout and ever hopeful.
If you have other tips and tricks to share with a newbie celiac family, we’d love to hear them – and potentially share them in future blog posts.
I’m so thankful we have the summer to figure out this gluten-free adventure before Z heads back to school in the fall. And I’m very glad we will all have a few GF years under our belts before she leaves us for college!
