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5/14/13 blog post

life with celiac disease - part 2

When Julie lost 10 pounds unintentionally, she sought medical care. Why would this happen? She also had, off and on, other medical symptoms for years: Reynaud’s Disease, bloating and some diarrhea. What was causing all of this?

Once diagnosed with Celiac Disease (CD), Julie contacted me. How does she follow a Gluten Free diet?!

What we did:

  • I provided Julie with the Dayton Children’s Newly Diagnosed Celiac booklet from our gastrointestinal clinic dietitian and we went grocery shopping! We went to several grocery stores, reading ingredient lists and comparing them to the VAST list of items that contain gluten.
  • We reviewed foods that Julie enjoyed eating and investigated if they were truly gluten free. One finding stood out: SOME items that were marketed as “Gluten Free” truly were not – simply for being manufactured in a facility that also manufactured wheat!
  • I purchased a helpful text: Libonati, C “Recognizing Celiac Disease”. The easy read helped educate us more about WHAT was happening in her body, WHY she should follow the diet diligently and the COMPLICATIONS of Celiac Disease.

When someone lives with such different diet restrictions, they become the experts. Some of Julie’s, now-expert and helpful, hints to eating Gluten Free:

  • Get a separate toaster and stop using family’s toaster
  • Get a separate skillet
  • Make a list of foods you like. Investigate these food labels to see if they are truly gluten free. Contact food companies for any questions on cross-contamination.
  • Keep a binder for food labels and information obtained from food companies
  • Keep handy a list of gluten containing ingredients for grocery shopping
  • Try different gluten free breads. Freeze the bread in slices. Use as needed.
  • Cook gluten free recipes in bulk. Freeze serving sizes for meals.
  • Gluten free foods now available: Rice Krispies, Chex Cereals (minus the wheat), Betty Crocker Gluten Free cake mixes
  • Keep your eye open for Gluten Free options at restaurants and bakeries:
    • Fox’s Pizza in Tipp City offers gluten free pizzas and breadsticks
    • Check out Sinfully Gluten Free in Centerville
    • PF Cheng’s has a vast gluten free menu
    • Cupcakes by Kristy in Tipp City makes gluten free cupcakes on Friday’s
    • More restaurants have a gluten free menu
    • Subscribe to magazine: Gluten Free Living

Since Julie knew that Celiac is an Autoimmune Disorder and there is a history of autoimmune disorders in her family medical tree, she watched for signs in her own family. About one year later, when her son was not growing well, she asked for a CD evaluation and he, too, was diagnosed with CD. As a result of following the Gluten Free diet, his blood levels drastically improved along with his growth in height. (Interestingly, Julie’s brother has recently been diagnosed with CD)

Then and now, the challenges of her son eating outside the home, in daycare and at school are present. Some helpful hints when needing to follow a Gluten Free diet outside the home for your child:

  • Contact the center/school and review their menu and food preparation method. Talk with the main teacher and create a plan on how to provide foods.
  • Breakfast – pack GF cereal daily
  • Lunch – Check with the center/cafeteria regarding meats as some may be okay. Confirm that the plain fruit and vegetables are really plain. Pack a sandwich or another kind of meat. Is the facility willing to warm things up for the child? Consider packing similar items for your child to eat (ie: if pancakes or pizza are on the menu, send the same gluten free item).
  • Snack – Provide the gluten free snack
    • Keep a box at school with prepackaged snacks so they are always on hand: Jell-O, pudding, raisins, GF pretzels and fruit snacks
    • Direct the teacher to communicate with you about future parties with special foods so you can try to send a similar gluten free item.
    • If going to a friend’s home:
      • Communicate with the family about your child’s diet.
      • Assist with identifying a plan for your child’s meals at their home.
      • Consider sending gluten free snacks, desserts and food alternatives to make the visit a pleasant one.

Activities to Zucchini would like to thank Julie for sharing her story of living with Celiac Disease.