LISBON, Ohio (WYTV) – Millions of Americans suffer from celiac disease. One local family from Lisbon, whose 8-year-old daughter was diagnosed with celiac, is hoping to raise awareness about the disease.
Imagine not being able to eat any of the food that’s sitting right in front of you simply because you’re unsure what’s in it, how it was made or if it could make you sick.
“I think there’s a lot of ignorance around the disease because people don’t think it’s real,” said Jamie Ward.
But for the Ward family, it’s very real. Jamie’s 8-year-old daughter, Lauren, was diagnosed with celiac disease after fighting several serious stomach issues and not growing or gaining weight for two years.
“So basically, whenever she eats gluten it kills the villi which is in your intestines and absorbs all of the nutrients and that’s why she wasn’t growing,” Jamie said.
Initially overlooked or misdiagnosed in 80% of cases, celiac disease is the body’s reaction to gluten, a protein found in wheat, barley, and rye.
But, it can cause much more than just stomach problems.
“The good thing is we know how to treat it, but it is a life-long illness,” said Dr. Christine Pasquarella, who works in pediatric gastroenterology at Akron Children’s Hospital.
Jamie says they noticed a huge change in Lauren just two weeks after going gluten-free.
“Like her mood, everything, and she gradually started to gain weight, but at first it was hard because there was a lot of things we didn’t know about like cross-contamination, which is a huge issue with that,” Jamie said.
“When you’re diagnosed with celiac, it’s not just the diet you need to be mindful of, it’s really how things are prepared at the home,” Pasquarella said.
This means families have to keep everything separate, including pots and pans, utensils, even toasters and pasta strainers.
Over time, excessive damage can lead to other issues and more serious health concerns.
“That’s why we’ve got to be so diligent to make sure that she’s not getting cross-contaminated because it does affect her in the long run,” Jamie said.
And the short term.
Jamie says even though she has a 504 plan for Lauren while she’s at school, often times she’s not contacted when treats will be brought into the classroom, leaving her daughter to feel isolated and left out.
According to the Celiac Disease Foundation, students with celiac disease and non-celiac wheat sensitivity have different needs at different times in their life.
Because of this, celiac disease is considered a disability under the Americans with Disabilities Act. The law requires that public schools accommodate a child’s gluten-free diet and disability needs.
“I just don’t think that they see what the big issue is. They’re supposed to call me 48 hours before any food is going to be brought in,” Jamie said.
But at the same time, Jamie says her family has been blessed in the fact that Lauren quickly adapted to her diagnosis and change in diet.
Even at 8 years old, Lauren has become as much of an advocate for herself as her parents have for her. So if she’s ever offered something, Lauren knows to look further into it.
“There’s a lot of products that say ‘gluten-free’ but if you read them they say ‘may contain traces of wheat’ or ‘manufactured on a shared…’ something that also produced wheat. So there’s the cross-contamination issue again,” Jamie said.
Jamie’s hope is that more people realize the effects of this disease, even if they can’t see it.
“Just show some compassion, I mean, it’s been difficult because like I said, sometimes I don’t think people take it seriously and also if there’s anyone who you think might be dealing with some of these symptoms with their kids, trust your gut and go to a doctor and say this is what’s going on and see what’s happening. It’s hard at first but you get used to it,” Jamie said.