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When Michael Frolichstein received a Celiac Disease diagnosis six years ago at the age of 40, he knew he would someday share his story and the story of others who had suffered, as he had, for years as an undiagnosed Celiac.
A filmmaker by trade, Mr. Frolichstein tinkered with the idea of making a documentary on the topic, but it wasn’t until his three-year-old daughter was also diagnosed that his passion to get the word out on this often misunderstood and under-diagnosed disease felt more urgent.
“I had health issues most of my life, but the last ten years leading up to my diagnosis were terrible,” he said.
As an adolescent, Mr. Frolichstein had stomach problems, was hyperactive and had a difficult time concentrating in school. He also suffered a few epileptic seizures.
“Behaviorally, I was all over the place. My doctors told me I had ‘nervous stomach’ and I would eventually grow out of it.”
Mr. Frolichstein did not grow out of it. In fact, his symptoms worsened as he aged and by the time he turned 30 he described feeling like a “caged animal” trapped in a body that felt exhausted and sick most of the time.
“I would wake up in the morning in a complete fog. It would take me hours before I could feel alert enough to go to work. I didn’t know what was wrong with me.”
Neither did his doctors, often prescribing him anti-depressants and sending him on his way.
What is Celiac Disease?
Celiac Disease is an autoimmune disorder. The purpose of the immune system is to protect the body from invaders. When a person with Celiac Disease ingests even the smallest amount of gluten, a protein found in some grains such as wheat, barley and rye, the immune system sees the gluten as an invader and attacks it.
This consistent bombardment causes damage to the wall of the small intestine, which in turn, deprives the body of vital nutrients. When the brain, bones and other organs are deprived of nutrients and left untreated, a broad range of serious health problems can arise.
Celiac Disease is not to be mistaken for gluten intolerance, which is not an autoimmune disorder but rather a sensitivity to gluten and can cause different but often devastating symptoms as well.
Today it is estimated that 1 in 133 people in the United States have Celiac Disease. It is also estimated that 83% of people with Celiac Disease are misdiagnosed or not diagnosed.
Statistics like these leave people like Mr. Frolichstein utterly dumbfounded, particularly because the disease can be detected with a simple and inexpensive blood test. If the blood test comes back positive, it is typically followed by an intestinal endoscopy to confirm diagnosis.
The Celiac ProjectThe Celiac Project is an hour-long film documenting life before and after the diagnosis of Celiac Disease. Mr. Frolichstein’s journey to meet others who have suffered and find answers from experts, ultimately leads him to uncover more celiac mysteries within his own family.
Dr. Alessio Fasano, director of the Center for Celiac Research at Massachusetts General Hospital, explains in the film why he believes so many patients are not accurately diagnosed.
“We thought, you have to have diarrhea, you have to have a big belly, you have to be a child … we know now this is just the tip of the iceberg. Now we know Celiac Disease can present itself in so many ways. It is not a GI disease. It is a systemic disease.”
Because symptoms can manifest in so many different ways, patients are often misdiagnosed. Celiac patients can be diagnosed with everything from lupus to MS to ADHD before discovering the root of the problem.
Mr. Frolichstein said he is forever grateful to the doctor who took the time to listen to his story. On his first visit with her, she listened to him for over an hour. She was able to connect the dots and had a hunch. She had his blood tested for Celiac. It came back positive.
“It was that simple,” said Mr. Frolichstein. “One blood test changed my life.”
After eliminating gluten from his diet, Mr. Frolichstein said it took him nearly two years to feel completely normal. Others say they feel better immediately.
“It is a mysterious disease and symptoms and healing are very different for everyone,” he said.
Mr. Frolichstein said he sees The Celiac Project as a jumping off point to raise awareness. “People are waiting five, ten, twenty years for a diagnosis,” he said. “That shouldn’t happen.”
The Celiac Project will be screened at the Evanston Public Library on July 8 at 7 p.m. in the Community Meeting Room. Following the screening, Mr. Frolichstein will participate in a panel discussion along with Dr. Vincent Biank, a pediatric gastroenterologist at NorthShore University HealthSystem; and Carrie Ek, a registered dietician and coordinator of the Pediatric Celiac Disease Center at Advocate Lutheran General Hospital in Park Ridge.