For about a year, TODAY co-host Dylan Dreyer’s son Calvin, affectionately known as Cal, experienced frequent stomach pain.
“There was one time the pain was so bad that we thought maybe he had something like his appendix burst,” Dreyer tells TODAY.com. “He was hunched over in pain.”
The family rushed Calvin, 6, to the emergency room where an ultrasound revealed his appendix was “fine,” she recalls. That started their search to understand why Cal's belly hurt. After various doctors’ appointments and tests, they learned what was wrong this past March.
“The bloodwork came back with the results of him having celiac disease,” she says. “I knew nothing about celiac disease. I knew a friend of a friend had it, and she couldn’t eat bread. That’s basically the knowledge I had.”
Stomach troubles, earache, rash
Calvin's stomach pain wasn’t the only new symptom Dreyer and husband Brian Fichera noticed their son developing.
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“He had an earache for a year. We took him to an ENT,” she says. “Everything was fine with his ears. But he complained of an earache all the time.”
Cal also developed a rash on his scalp, and his hair began falling out. Often, he dropped things.
“He’d be eating, and he’d just drop his fork,” Dreyer says. “We used to joke with him and call him banana hands.”
After the emergency room visit, the couple visited doctors, and they eventually visited a gastroenterologist who ran a blood test that revealed Cal had celiac disease.
“He had to go and get an endoscopy,” Dreyer says. “They needed to send the camera down into his intestines to make sure there was damage caused by celiac disease.”
The endoscopy confirmed Cal's condition. The family switched to a gluten-free diet and even purchased some new kitchen equipment.
“Not only is it not feeding him any wheat products but it’s also the cross-contamination risk,” Dreyer explains. “All of my stuff in the kitchen had to be thrown out, all of our wooden spoons, wooden cutting boards, anything that had a scratch in it … any rivets on the inside of the pot where the handle is. All of that had to be thrown out because gluten can hide everywhere.”
The family has made a lot of big changes, which has made a positive impact on how Cal feels.
“He was just in constant pain,” she says. “He finally feels good ... (for) the first time in a year. He’s happy we discovered this because it’s like, ‘OK, good. I can finally feel like myself.’”
His rash and ear pain also disappeared.
“It turns out that’s a side effect of celiac disease,” she says. “It turns out that weakness in your hands is also a side effect. … We took him to the doctor for the stomach pain, and it turns out that it was all caused by the same pain.”
Celiac disease
It can be difficult for people to understand what celiac disease is and how it differs from a wheat allergy or gluten intolerance.
Unlike wheat allergy or gluten intolerance, “celiac disease is an autoimmune condition,” Dr. Lisa Fahey, co-director of the celiac Center at Children’s Hospital of Philadelphia, who is not involved in Cal’s treatment, tells TODAY.com. “In this condition, eating gluten triggers an immune response, and that can create a variety of symptoms for patients.”
Even in patients without outward symptoms, the gluten still wrecks their intestines.
“Celiac disease is an autoimmune condition where the body’s fighting against itself,” Fahey adds.
Someone with a gluten intolerance might experience gastrointestinal symptoms, such as abdominal pain, nausea and vomiting, but “it’s not doing damage to the intestinal lining,” she continues. She adds that a wheat allergy is an “allergic response that might require an Epipen.”
Celiac disease can begin at any time in life. Symptoms can include:
- Vomiting
- Belly pain
- Diarrhea
- Bloating
- Lack of appetite
- Constipation
- Irritability
- Headaches
- Rash
- Stunted growth
- Brain fog
- Sleep problems
Not every child will have all the symptoms, and some children with celiac disease might appear to be fine, but the gluten is still harming them. That's why it's important to know if there is a family history of celiac disease. If a parent has it, it's useful to have children screened for it to prevent long-term effects.
Many symptoms of celiac disease are similar to those caused by stomach bugs, which are common in kids. But if these symptoms linger, then talk to your child's doctor.
“An infection may (last) one or two weeks,” Dr. Kimberley Chien, a pediatric gastroenterologist at Weill Cornell Medicine and Cal’s doctor, tells TODAY.com. “If these symptoms are continuing on for more than a month … I would consider some sort of further work up.”
A blood test can detect if someone has celiac disease, and, as in Cal’s case, an endoscopy looking for intestinal damage follows. Treating celiac disease means stopping eating gluten.
“If you remove foods that contain gluten, that’s how you can treat the disease,” Chien says. “It’s a lifelong condition.”
Removing gluten from the diet means avoiding foods with wheat, barely and rye in it. But it also requires close reading of food labels because gluten — the protein found in wheat, barely and rye — is used in many food products that you wouldn't think would have it.
“Cross-contamination can be an issue,” Chein adds. “We really recommend that people don’t ingest (any) gluten. You can never anticipate how much you can have before symptoms occur.”
Living with celiac disease and raising awareness
Dreyer is sharing Cal’s story because she hopes to debunk myths about celiac disease.
“The misconception is it’s something that makes you feel uncomfortable, like a dairy allergy, where it hurts your stomach,” she says. “It’s so much more than that because it actually destroys his insides. He literally had a stomach ulcer because of it. His hair was falling out because of it.”
She also encourages parents to continue advocating for their children’s health.
“Try to find a doctor who will find that answer for you,” she says. “If it does happen to be celiac, catching it early is super helpful because kids heal very, very quickly.”
Already, Cal feels better. She calls him “my rule follower" because he's been good about turning down foods he cannot eat. Dreyer also sends him with gluten-free cupcakes or snacks so he’s not left out during class treats or birthday parties.
Cal loves food and cooking with his mom — the two film the TODAY show segment "Cooking with Cal" together. And since Cal's diagnosis, Dreyer's been experimenting with various gluten-free flours and products to find the best replacements for breads, pastas and pizza crusts. Recently, she made a gluten-free white bread that he thought was just OK. So, she’ll try a different recipe until she finds the right one.
“I’m trying to find his favorite of everything,” Dreyer says.
“I want him to still be able to enjoy food and not just settle for something,” she says. “There’s a lot of recipes that just don’t have gluten. I can cook a lot that doesn’t involve breads and flours.”
Dreyer’s hoping that through “Cooking with Cal,” the mother-son duo can help people better understand what celiac disease is.
“It will be good to educate people ... that there are delicious options because Calvin likes good food,” she says. “It’ll be a fun challenge.”
This story first appeared on TODAY.com. More from TODAY:
