Celiac Disease Awareness: Local family shares journey to gluten-free living

Published 3:48 pm Sunday, May 14, 2023

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ST.CHARLES PARISH — From the time she was an infant, Reece Rome was the most irritable and fatigued child her family had ever known. Her temperament vastly improved once she transitioned to a gluten-free lifestyle after being diagnosed with celiac disease at 2 years old.

Celiac Disease Awareness Month is observed annually in May. Celiac disease is not a food allergy, but a serious autoimmune disease where the ingestion of gluten damages the small intestine, preventing nutrients from being properly absorbed into the body. While 1 in 100 people worldwide are estimated to be affected by celiac disease, only about 30% are diagnosed.

According to the Celiac Disease Foundation, early diagnosis decreases the risk of developing another autoimmune condition. Left untreated, celiac disease can lead to an array of long-term health conditions, from heart disease to liver failure, neurological symptoms, and types of cancer.

Now 5 years old, Reece is able to advocate for herself and spread awareness of celiac disease in the River Parishes and beyond. Her mother, Rachelle Rome, recalled the journey toward getting a diagnosis.

“Reece always had digestion issues and was colicky from the start. We didn’t realize that gluten could pass through breastmilk. Doctors thought it was a dairy issue. No one in the family had been diagnosed with celiac disease or even a gluten intolerance, so it wasn’t on our radar,” Rome said.

Reece’s temperament worsened once table food was introduced and she began ingesting grains and pasta. By the time she was 18 months old, she was beginning to verbalize that her stomach was hurting.

After her mother repeatedly expressed concerns to doctors, bloodwork was ordered when Reece was 18 months old. The bloodwork included a celiac screening that came back mildly positive. The COVID-19 pandemic left hospitals at full capacity and delayed Reece’s repeated bloodwork, which came back with levels 10 times higher than the first blood panel. After a follow-up intestinal biopsy revealed damage, her family immediately switched Reece’s diet and started living a gluten-free lifestyle.

Within four weeks, Reece was a different child. A bubbly personality her family had only caught glimpses of before was finally able to shine through. The change in diet also improved an array of physical symptoms. Reece’s hair, once brittle and wiry, returned to the beautiful ringlets she’d had as a baby. Her nails were no longer brittle, a persistent rash cleared, and her pot belly quickly sank down.

While an early diagnosis saved Reece from years of pain and procedures, managing celiac disease comes with its own set of challenges.

“We are lucky to have friends and family that are really supportive because it’s a very restrictive lifestyle, way more restrictive that I originally thought,” Rachelle said. “It’s not just a matter of avoiding bread.”

One crumb is enough to cause damage for weeks. Eating out at a restaurant is rare because it’s difficult to account for cross contamination. Reece’s family has switched out everything from kitchen gear to pots and toothpaste. Even baking with flour is a risk because the particles can remain suspended in the air for 24 hours and trigger a flare up.

“I think what will affect us the most, from a child’s point of view, is just being included. Because of her limitations, she can’t have the cookie cake at the party,” Rome said.

Rome is thankful that Reece isn’t scared to speak up and advocate for herself by asking if something is safe. Reece’s journey was recently featured through an awareness pajama collection created by St. Charles Parish-based company NolaBee.

On the day her collection was released, Reece’s classmates surprised her by dressing up in her pajamas, enjoying a gluten-free snack, and taking time to talk about celiac disease.

“It gives them that moment of feeling accepted and being understood that I think is often missed, especially with these young kids, especially with these more rare conditions,” Rome said.

For more information about celiac disease, visit celiac.org. To learn more about Reece’s story and view her pajama collection created by Norco native Summer McCune, visit nolabeemade.myshopify.com.