Valley blogger shares personal story of celiac disease to help ease burden

PHOENIX - Celiac disease is becoming alarmingly more common today. It's a digestive condition triggered by consumption of protein gluten. When those who suffer from the disease eat foods containing gluten they experience an immune reaction in their small intestines, causing damage to the inner surface of the small intestine and an inability to absorb certain nutrients. This reaction can present itself in many ways including but not limited to

  • Stomach Pain and Upset
  • Bloating
  • Diarrhea
  • Joint Pain
  • Muscle Cramps
  • Skin Rash
  • Mouth Sores
  • Tingling in Legs or Feet

No treatment can cure Celiac Disease. However, you can effectively manage it by changing your diet.

Wendy Rose is a Valley Registered Nurse, and authors a popular blog geared toward parents who are raising children with Type 1 Diabetes and Celiac Disease. Both Wendy and her 8 year old daughter, Adalyne, have Celiac Disease. We sat down with them to hear their story and how their blog is helping bring other Celiac Families together.

SF: How has Celiac affected your family?

Wendy: Celiac Disease can be completely controlled by the strict adherence to a gluten free diet. Prior to my daughter's celiac diagnosis in 2008, we were a normal family who ate normal mainstream foods without much care about what gluten is or where it can be found. We enjoyed meals in restaurants without worrying about cross contamination issues, bought our favorite foods on sale, clipped coupons, and enjoyed baked goods shared by neighbors during the holidays. We had pizza nights, enjoyed pasta dinners, and could buy a fancy birthday cake from our local grocery store.

Since celiac entered the picture, we've had to pay closer attention to ingredient labels, because gluten can be hidden in other ingredients (malt, for example is derived from barley), and the current FDA labeling law does not require gluten to be identified. Eating out also became a challenge, because of cross-contamination concerns. In addition gluten-free foods cost significantly more, rarely go on sale and coupons are hard to come by.

SF: What has that meant for you as a mother?

Wendy: It's meant paying close attention to the marinades I use for dinner meats, and instead of using a can of "cream of _X_" soup when making a casserole, now I make my own. I've experimented a good bit with recipes, and can now whip up some gluten free muffins, waffles, or cookies just as easily as I could before. Basically, I've learned to simplify the ingredients I rely on most.

I've also had to educate the school and friend's parents about what gluten is and where it can be found. You wouldn't think about it, but play dough and art projects using mainstream cereals are a problem since gluten can get under her fingernails, and then contaminate anything she eats with her hands.

Classroom and birthday celebrations pose a challenge, since cupcakes and pizza are popular party choices, and they both contain gluten. We've made it work. And life is still good...even without gluten!

I've had to overhaul my kitchen to replace old staples with new ones. I do most of our gluten free shopping at Sprouts . Sprout's hosts a Gluten Free Jubilee event several times a year where everything gluten free is 25% off, so that's a great time to stock up. Gluten Free Creations is an exclusively gluten free bakery with 2 locations in the Phoenix area. They offer everything from a variety of breads and pizza crusts to custom cakes and gluten free Twinkies!

SF: What is your advice to other moms? Do you have a list of 3-5 "Smart and Simple" tips for our Smart Family viewers on managing this disease?

Wendy: First of all…GET EDUCATED! Learn everything you can about celiac disease and how to live a gluten free lifestyle. The internet is full of great resources, and gluten free cookbooks can be found at your local library.

Connect with others who understand, and surround yourself with a network of support. Support has been the key to helping me overcome fear and replacing it with confidence. One amazing local resource is the Celiac Support Group of Greater Phoenix .

Smart Tip 1: Always keep a gluten free granola bar and/or a serving of fruit in your purse or bag. You NEVER know when you'll need a snack, and it's possible there won't be any gluten free options immediately available.

Smart Tip 2: Make a batch of your/your child's favorite cupcakes, frost them, and freeze them in a single layer. Once frozen through, send half to school to be stored in the freezer and keep the rest in your freezer at home. You'll always have a gluten free treat on hand whenever celebrations that pop up!

Smart Tip 3: Check out the websites for your favorite restaurants ahead of time. Many offer a gluten free menu, so you can

be prepared before dining out.

SF: You started a blog to help other families. Tell us about this and why it was important for you?

Wendy: I started www.CandyHeartsBlog.com  in 2008 when I was looking to connect with other mothers who are raising children with Type 1 Diabetes. Since I began blogging, both Adalyne and I received our Celiac diagnoses.

I strongly believe that mothers must take care of and look out for each other. I believe that we're all doing the best we can to raise healthy families and productive children. If there is a mother anywhere out there who feels alone in the face of a Celiac or Type 1 Diabetes diagnosis, I want to find her and help empower her to face these challenges with confidence.

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