We talk a lot about living with diabetes around here (hey, we're a D-blog!), but we're keenly aware that other ailments affect many of our PWD brethren, one of those being gluten intolerance.

Given that today is National Celiac Disease Awareness Day, we're excited to host California-based D-Mom Wendy Rose, who blogs at Candy Hearts and whose teenage daughter lives with both type 1 diabetes and celiac disease.  Wendy's daughter is now 15, and over the years she's shared some great practical advice for any parent dealing with this combo (hint: it's all about planning ahead).

 

T1D and Gluten-Free Advice from Wendy Rose

July 2005: Daughter #1 diagnosed with type 1 diabetes

November 2005: Informed we would lose our health insurance after 12/31.

December 14, 2005 (10 am-ish): Got husband's official job offer for a position across country to maintain access to health insurance. (Also - put house on market).

December 14, 2005 (2 pm-ish): In early labor with our second child. (Also - 3 pm haircut. Yes, I did.)

December 15, 2005 (2 am-ish): Daughter #2 arrives.

January 2006: Husband leaves for new job.

And the list keeps going... new job, figuring out childcare for a child with diabetes, Daughter #3, new home build, insulin pump transition, sending diabetes to school...

By the time my type 1 daughter was diagnosed with celiac disease in 2008, I was pretty sure it was going to be the proverbial straw that would break this camel's back. I didn't know where to begin or how we'd ever attain anything that resembled a sense of normalcy again. It took me a few months to find my groove, but I'm pleased to report that we were able to successfully tackle this gluten-free thing... just in time for my own celiac diagnosis in 2009.

These days, Addy is an independent teenager, but those early days of balancing both diagnoses feels just like yesterday. Managing my daughter's celiac and T1 in social settings can be a challenge, but it doesn’t have to ruin all the fun!

Here are a few examples of some common situations, and how we manage(d) them:

Classroom and Birthday Parties: I make a batch of gluten-free cupcakes using a modified GF Betty Crocker recipe. After they've cooled completely, I frost, decorate, and freeze them overnight in a single layer before putting them into freezer bags the next day. Then I keep half in the freezer at home and send the other half to be stored in a freezer at school. When it's party time, just pull one out and... WALA!!!... a pre-carb-counted gluten-free treat will be thawed in about 15 minutes!

Share on Pinterest

Whenever it was our turn to provide a class snack, I always sent something gluten-free for everyone. Treats in the "Fruit Roll-Up" category tend to be my standard choice. These snacks are easy for the teacher to pass out, because they come nicely pre-packaged... and BONUS -- the carbohydrate amount is listed.

For birthdays at pizza joints, I brought along our own pizza. At one of the most popular places in our area, I actually brought an uncooked pizza on a cookie sheet lined with foil, they ran it through the oven, and then I'd slice it using our own pizza cutter from home.

Also, decorating sugar cookies tends to be a pretty popular activity for kids. Between Halloween and Valentine's Day, I can't even count the number of cookies my girls have decorated at various parties over the years. To be ready, I keep a batch of this gluten-free sugar cookie dough in the freezer. Just slice off a chunk, thaw, roll out, cut, and bake. With the help of an assortment of cookie cutters, we're always ready! I call these: our A1C cookies!

Potlucks: I generally brought the same kid-friendly dishes whenever we participate in a potluck: Baked macaroni-and-cheese using THIS recipe (minus the breadcrumbs, using a gluten-free flour blend instead of regular flour, and substituting gluten-free pasta), along with a pan of Coconut Chocolate Nirvana Bars (HELLO DELICIOUS!!). By bringing both a main dish and a dessert, I was able to relax knowing that my daughter enjoyed the fun with some of her favorite foods! {On a side note, I NEVER had leftovers to bring home. Everyone raved over these dishes... it was a win-win! Who needs gluten?!}

I also try to arrive a little early for potluck-style gatherings, and bring along some GF corn chips and/or a box of GF crackers. I like to see the spread and peek at labels ahead of time. I also tend to start perusing the various dips and whatnot before the line forms and, unashamedly, scoop out some of the dips I deem to be gluten-free so I can set them aside before the rest of the party begins contaminating them with gluten-containing crackers and such.

Sleepovers: So, here's the thing. Sending type 1 diabetes to a sleepover can be a drag. Sending type 1 diabetes AND celiac to a sleepover, well... isn't easy. Separately, each diagnosis presents its own challenges. Combine the two, and it can be downright overwhelming.

Regarding celiac, I used to call the host-mom ahead of time to find out her plan for what food she'd be offering and then packed the same gluten-free options for my daughter. Everything from dinner to popcorn to drinks to breakfast. It's been perfectly normal for my daughter to bounce through the door with her gluten-free designated toaster and a frozen gluten-free waffle in tow. {What? Not all kids bring their own toaster to the party?}

These days, we just send a random bag of gluten-free snacks to share with her friends. She’s learned what foods she can and can’t have. She knows how to order herself a gluten-free pizza.  She can read labels, and doesn’t mind sticking to a salad or fruit if those seem to be her safest options.

Regarding T1, well, the road to independence has been a ride of ups and down. Along the way, we’ve figured out things that work…and things that don’t! Through time and experience, we’ve developed a few ground rules:

  1. You must respond to your parent’s texts/calls immediately. Bring a charger. Turn the volume up. Make it annoyingly loud if you must. Tell your friends that it’s a deal breaker. Everybody will have to deal with it. (Your parents will try not to bug you.) Your parents also need a phone number to reach your host-parent as well.
  2. You must send pictures and ask for help figuring out a bolus if you feel stuck.
  3. Check your blood sugar and treat accordingly at 10pm. No carbs after 10pm. If you’re doing something that involves carbs after 10 pm, check in with a parent so we know what time your last bolus of the night is going to be.
  4. Wear Dexcom and make sure Share is connected.
  5. No sleepovers with friends who do not know about your diabetes. It’s up to you whom you choose to disclose your diabetes to, but sleepovers are reserved for people who understand that you must take care of yourself in their presence.

We’ve also reviewed/practiced glucagon with a few select friends. These are the same friends who have requested access to her Share data and who keep a bag of Skittles (or the like) in their backpacks. They have come to learn that they’re an important part of her peer team, and are happy to look out for her.

No matter what social situation your child is headed to, gluten shouldn't stop them. By creatively preparing ahead of time, you're sure to make some awesome memories while enjoying your favorite foods! Who says you can't have your (gluten-free) cake and eat it too?

 

Love it, Wendy! You are on top of your game -- and the image of your daughter toting along her own toaster made us smile. Celiac and type 1 may be double the punch, but you're handling it all with a great practical approach and some levity, so more power to you!