Following a lifetime of migraines, nausea, diarrhea and abdominal bloating without a diagnosis or cure, Theresa Brandon at age 55 finally got her answer. Celiac disease.
“I almost lost my life to it,” said Brandon, now in her 60s. “My body had started shutting down.”
Brandon, of Cedar Rapids, heads the Gluten Intolerance Group of Eastern Iowa and said she’s glad the once-obscure condition now is more widely acknowledged and diagnosed. The heightened awareness has made it easier for her and others in the corridor to live more comfortably.
“I went years and years before being diagnosed and had CT scans and pills that cost thousands,” Brandon said. “Now, I just take one blood test for $70 a year and I know if my antibodies are OK.”
She also has become an expert on how to be completely wheat-free, and David Elliott, professor and division director of gastroenterology at the University of Iowa Hospitals and Clinics, said that has proved to be the best and often only cure for most of the expanding population of Celiac patients.
“I think strict avoidance of gluten is the way to go,” Elliott said.
More people today are taking steps to do that as celiac disease continues to become more prevalent and as stores and eateries catch on to the consumer trend. Elliott said three things are behind the increase in gluten-free items on store shelves and the surge in patients wanting to be tested.
First, he said, there simply are more people living with celiac disease today than 20 years ago. He said an analysis of current blood bank samples compared with those taken decades ago indicates more people today truly are living with the antibodies related to celiac disease.
Second, Elliott said, more doctors today are able to recognize and diagnose it using a screening test that wasn’t previously available.
“So part of the increase is real, and part of it is better recognition,” he said.
There also is the increased public awareness and the trendy nature of the gluten-free movement.
“More people are making self-diagnoses as having celiac disease when they might not,” Elliott said. “And there are celebrities saying that they feel better when they’re not eating wheat.”
In response to the increase in celiac disease prevalence and awareness, doctors are becoming more informed, hospitals and clinics are hosting gluten-free workshops and restaurants and grocers are offering more wheat-free options.
Elliott said, from the medical perspective, there are pros and cons to the increase. In the past, he said, UIHC doctors had to do a lot of patient education when diagnosing celiac disease because there was so little information out there.
Patients had to call manufacturers to find out what was in a product, and grocery shopping was a lot more tedious and difficult. Today, there are area support groups and plenty of information online.
“The web has helped tremendously,” he said.
But, Elliott said, more people are coming wanting to be tested, adding to the patient load.
“It’s actually not as difficult to take care of patients today, but we have more of them, so it all comes out in the wash,” Elliott said.
UnityPoint Health-St. Luke’s Hospital has offered two community workshops on celiac disease and going gluten-free — the most recent was held last month. Both were “very well-attended,” said hospital spokeswoman Sarah Corrizzo.
Dietitian Marilyn McCall said she, too, has been pushing education since the uptick in diagnoses and has a steady stream of clients wanting advice on how to truly avoid gluten.
“My job is to teach what you can eat and how to read a label,” said Mcall, a dietitian at Jones Regional Medical Center in Anamosa, which is associated with St. Luke’s Hospital. “Making your kitchen gluten-free is huge. You can’t cut a regular sandwich with a knife and then cut a different sandwich with the same knife and have it be gluten-free.”
McCall said she sees patients with diagnosed celiac disease and those with sensitivities or intolerances. She educates them all on how to eat at home and at a restaurant.
That’s where support groups come in. A community of people with similarly sensitive guts taste products together, write to manufacturers and request free samples to review.
“We have to advocate for ourselves,” McCall said.
Dean Abramson, gastroenterologist with Gastenterologists, P.C. in Cedar Rapids, said the cause of the rise in celiac disease is unclear.
“More adults are being scanned than ever before,” he said. “But we honestly don’t know why the increase.”
Some have speculated that wheat processing over time has created intolerances, and others have said the population’s intestines have become weaker. Either way, Abramson said, he thinks the heightened awareness is a good thing.
“Celiac disease can be a severe disease leading to a reduced life span — it can be the cause of significant morbidity, diarrhea, infertility and fetal demise,” he said. “So it’s an important thing to pick up earlier rather than later.”
Abramson said he thinks diagnoses will continue to increase, and so will public awareness.
“There has never been a better time to have celiac disease, in that regard,” he said.
Elliott, with gastroenterology at the UIHC, said that although the number of people with autoimmune diseases has been growing for years, he thinks the incline soon will level off. One in 100 people have celiac disease today, he said, and he thinks that rate will plateau around 1 in 90 or 1 in 80.
With those numbers, local experts think eateries, grocers and other food providers will continue to increase their gluten-free options. Even some churches — like Iowa City’s Gloria Dei Lutheran Church — have added a gluten free option during communion.
Pastor Rob Dotzel said the church began offering the alternative in response to requests from gluten-free members. It did, however, present some logistical challenges at first — like avoiding contamination from the communion server’s hands.
“We place a special bowl of gluten free wafers on a stand in the aisle, and worshippers who want that pick one up on their way to the altar,” Dotzel said. “So far, it has worked out pretty well.”