Lessons Learned From Living With Celiac Disease

When my daughter, Danielle, was first diagnosed with celiac disease at the age of six, I was petrified. Now, almost five years later, I’m learning the ropes and can explain it better to others.

The top things I’ve learned about living with the condition are:

• Going gluten-free isn’t a fad; for people with celiac disease, it’s a necessary lifestyle change
• Gluten hides EVERYWHERE; you become a constant detective on stomach issues and other health-related items; even the smallest thing can turn out to have a big impact
• Rashes aren’t just rashes, and joints don’t just ache because you are growing
• Eating foods with gluten may cause you to feel lethargic; people may think you are lazy, but really, your body just can’t do anymore
• Celiac disease isn’t an allergy; it’s an autoimmune disease
• It can be hard to find celiac-safe food; if we’re not sure we’ll have some options, we bring our own food

If it had not been for her pediatrician, Grace Baysa, MD, with Meritas Health Pediatrics, we may have had to wait a long time for a diagnosis. Dr. Baysa was diligent in finding out why Danielle was falling off the growth charts.

What has surprised us most regarding Danielle is that her GI doctor, Julia Bracken, MD, with Children’s Mercy Hospital, said she would gain more energy as the gluten got out of her system. We swore that could not be possible, but we were wrong! She is so energetic she wears us out!

Advice

If you’ve recently been diagnosed with celiac disease, I would highly recommend speaking to an NKCH dietitian or the dietitian at your local grocery store, and doing some research online. Here are a few other tips:

• You can’t cheat celiac disease; in the long term, you only cheat yourself, and feeling sick all the time is no fun
• Seek friends who have experience with living gluten-free
• Don’t let the diagnosis overwhelm you because you can still eat a lot of foods; unprocessed foods are your best foods: fruits, veggies and meat

Resources

Helpful resources for us include:

• Generation GF – In addition to online info, they send a magazine with recipes and stories of other children with celiac.
• Facebook - There are so many support groups on Facebook. You’ll find some that fit you, and some that focus on gluten sensitivity. They all have good information.
• Gluten Free scanner and Find Me Gluten Free – We like these apps.

Gluten-Free Food Recommendations

• Our main tip – Fix what you like.
• Bob’s Red Mill Gluten-Free Flour – We substitute this brand one-to-one in all recipes containing flour (the nonceliac man in our life eats all of it and doesn’t know the difference).
• Great Value brand hamburger helper – It tastes the most like the gluten version.
• Hy-vee brand pizza – We adore this pizza because we can add our own toppings and extra cheese.
• Schär brand foods – The food tastes the most like gluten to us.

Restaurants with true gluten-free options are a hard find for us because celiac’s have to worry about cross contamination. We like:

• BC Bistro
• Chick-fil-A
• Shack (Breakfast and Lunch)
• Strips Chicken in Olathe

We’ve heard wonderful things about Jasper’s Italian Restaurant and Trezo Mare, but have yet to try them.

Changing your diet to go gluten-free is a process, and not an easy one. It’s a big adjustment. The more you learn, the easier it becomes.

Related Reading

Is Gluten Free a Free Pass?

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Amy Lang

Amy is the Unit Secretary/Tech for Cardiac Rehab. She’s worked in the department for five years. Her family collects antique tractors and steam engines. During “steam” season, they can be found at local shows, occasionally with their Model A. She also researches gluten-free foods, both local options and in places she’d love to visit with her daughter.