Spontaneity goes out the window, says Paula Brody, when you have a diagnosis of celiac disease. You can’t ever “just go” out to eat or book a “last minute” vacation – you always have to have a Plan B for food. For more than four years the Brody family has been creating “Plan B’s” for their 14-year-old, Max.
“Max got sick in January 2016, when he was in third grade,” she recalls. “At first it was a strep diagnosis with severe stomach pain. The doctor thought he also might have acid reflux. He was miserable. Antibiotics and reflux medicine did not help.”
Finally, the doctor said he wanted to do blood work because they did not know what was wrong with Max.
“It wasn’t until the first day of spring break when he called to tell me that Max had celiac disease,” said Paula, who is an administrative assistant in the Fine Arts Department at Liberty Public Schools. “And I remember thinking – I don’t know what that is.”
That was then. Now the single-mom of two answers questions like a pro.
“Celiac flattens the villi, the tiny, fingerlike protrusions lining the small intestine. That means the body cannot absorb nutrients,” she says. “It’s reversible, but only if you follow a gluten-free diet.”
And that, she learned, is difficult.
“Gluten is in everything,” she says. “And cross-contamination is hard to avoid.”
In addition to changing Max’s diet, the Brody family had to revamp their kitchen.
“I learned that gluten can get into cracks or scratches on plastic or wooden kitchen utensils and non-stick cookware. I had to replace it all,” she says. “Thankfully, I had a set of stainless-steel pots and pans, but Max’s grandmother bought new cookware and utensils so she could cook for him.”
It took her a year to overhaul her kitchen.
Now she has a separate counter area where gluten is not allowed, she keeps Max’s snacks in a separate cabinet, she bought a toaster oven so he can make pizza and chicken nuggets, and he has his own shelf in the refrigerator. His side of the table is gluten free too. If Paula prepares something with flour for Max’s older brother, 17-year-old Parker, she mixes it in the laundry room to avoid getting flour dust in the air.
“Parker has been so helpful to watch out for Max. When he has friends over he explains to them the kitchen layout and avoiding gluten,” Paula says.
Besides the cost of replacing kitchen utensils and appliances, Paula says her grocery bill almost doubled.
“Packaged items that Max enjoys and can eat are almost triple the cost of the same items with gluten,” she says.
Then she saw a TV news story and read a KC Star article about Emily Brown and FEI. She reached out immediately. Because she already had a doctor’s diagnosis, she was approved quickly.
At that time FEI’s only method of food distribution was through food pantries. Paula says her first trip to the pantry was “surreal.”
“I saw a cake mix – and it was free! Gluten-free cake mixes are about $5.00. A loaf of bread is also $5.00 and you don’t get as much as in a regular loaf of bread. They had fresh produce too. I remember taking home apples, potatoes, and peanut butter,” she marvels. “It felt like such a blessing. I was so thankful that I could pick it out and not have the expense.”
Now Paula loves ordering online and the convenience of the direct-to-door delivery.
Max, who gets really excited when the box shows up on the front porch, enjoys Picky Bars (gluten-free granola-type bars), white cheddar popcorn, and Aldi’s LiveGfree chicken nuggets. And mac and cheese! Paula estimates that 25% of the food Max eats comes from FEI.
Although the Brody family is quick to count the many blessings Max has, including FEI, a supportive older brother, and family and friends who want to help, Paula says it’s very hard to have celiac disease because of the social issues.
“You can’t eat out where your friends want to go—you have to eat before, or take your own food if the restaurant doesn’t have food that is safe for you to eat,” she says. “Kids want to be like other kids. “
That’s why, in addition to social challenges, individuals with celiac disease can become depressed. According to Beyond Celiac, “the risk for developing depression is 1.8 times more likely for people with celiac disease in comparison to the general population . . .because of the significant impact on daily life and the challenges and stress that can come with managing a chronic condition and the gluten-free diet.”
The Brody family knows this is a life-long journey that’s easier when they connect with others.
For Paula, the best way is through social media sites, like Facebook.
“I found support groups for celiac disease and gluten free both nationwide and local. People post when they have a good experience at a restaurant, so we have several that we still need to try,” she says.
For anyone who is just beginning this journey, she recommends reaching out to Children’s Mercy or your family doctor for other food allergy or celiac families because “they will know of shortcuts that can make your life easier.” And try social media! You may find great connections.