New Colorado study uncovers need for universal Celiac Disease screening in children

Colorado is the only state in the U.S. that's conducting mass screening for celiac disease among children, and it's happening at a research center in Aurora. 

Doctors at the Barbara Davis Center at CU Anschutz and Children's Hospital in Aurora have just published new research finding solid evidence backing the need for universal screening for celiac disease in all children nationwide, to protect their health and safety.

Celiac is an autoimmune disease that inflames the digestive system when exposed to gluten in food. Researchers in Aurora have found many children won't show symptoms for years, even though the disease can be quietly wreaking havoc on their development and health.

One such child is eight-year-old Eli Karban in Parker. His mom, Rachel Karban, says Eli had no typical digestive symptoms like adults with celiac often get, like diarrhea, cramping, or vomiting. 

When he was five, he developed a rash on his ears after eating pasta. 

His family wouldn't have known he was developing a serious autoimmune disease, if it weren't for his mom working at the Barbara Davis Center as a research services principal, closely involved in many of the celiac studies underway there. 

Right now, the only treatment for celiac disease is a gluten-free diet, so once Eli's diagnosis was confirmed, her family got to work changing their entire kitchen routine. 

When his mom cooks, she uses separate cutting boards, cookware, strainers, and utensils, to ensure that traces of gluten that's used in the rest of the family's meals don't get into Eli's food. 

She says as a mom, it's been tough making her home gluten-free. 

"It is a challenge, and it is thinking about it lifelong and thinking about it every day," Karban said. "I think the biggest challenge is all the little things you have to remember... you're going to a soccer game and you don't have snacks in the car, and... another challenge is definitely traveling."

But facing those challenges early is critical, Dr. Marisa Stahl, a gastroenterologist specializing in celiac disease at Children's Hospital, says if left untreated, celiac can cause a host of health problems down the road.  

"We have seen in other studies with celiac disease is that when it's untreated, it can lead to things like poor growth, it can lead to issues with vitamin D absorption and that can lead to issues with bone health, it can lead to poor iron absorption, which can lead to different neurocognitive symptoms," Dr. Stahl said. "There have been some studies that have tied untreated celiac disease to infertility, and then while incredibly rare, we know that there is an association between untreated celiac Disease and intestinal lymphoma."

Dr. Stahl's latest study – just published in May – is the first of its kind in the U.S. to advocate for universal celiac disease screening of children. 

Her study found the majority of children in their initial screenings for the study were not experiencing gastrointestinal symptoms, or were experiencing different kinds of symptoms, like headaches and decreased energy levels. 

"Then, 30 out of 38 children that had symptoms in this study felt better after going on a gluten-free diet," Dr. Stahl said. "So, I feel like that's a really important finding because right now in healthcare, we rely on symptoms to know who to screen for celiac disease, but that really just goes to show that we're probably missing a lot of children who actually do have symptoms and would benefit from screening."

She added, "The other things that we found with this study were that iron levels were low in the children that we diagnosed with celiac disease, and that got better on a gluten-free diet, quality of life improved with a gluten-free diet, and while there are some people who have raised concerns that if we place children who are maybe less symptomatic on a gluten-free diet, will that make them more anxious or will that make them more depressed, it did not in this study."

Researchers at the center have also found Colorado has a higher incidence rate of celiac disease among children under 10 years old than some European countries that have been conducting mass screenings for more than a decade. 

Right now, they're trying to figure out what environmental triggers in Colorado may be causing this higher rate. 

"We don't know yet. It's an area that we're definitely interested in," Stahl said. "It's likely something in the environment, whether that's related to diet and nutrition or microbiome, there's a lot of different things that it could be related to."

Karban says she's glad to be able to help out with those future studies. 

"I do feel like I was meant to be here, and I was meant to do this research and be a part of this team," she said. 

She says she's glad she can help other families like hers get on a path of living a healthier life. 

"The things that we're doing are really making a difference," Karban said. 

The same gene mutation that can lead to celiac disease is also linked to Type 1 Diabetes. 

Getting screened is a simple process. It's a quick finger prick or blood draw. For more information on how to make an appointment to get screened, click here.