Rachele Ackerman noticed her 4-year-old son, Jackson, felt constant pain in his stomach and was growing slower than his peers. So, Ackerman took her son to multiple doctors to find what was wrong. It wasn’t until one doctor recommended a visit to the gastroenterologist that progress was made.
They did a blood test for Celiac disease, an autoimmune disease that damages the small intestine when a person eats gluten, a protein found commonly in barley, wheat and rye.
The test came back high but a colonoscopy showed he did not have Celiac disease. Still without an answer, Jackson lived the next four years without major symptoms until he started to constantly endure intense stomach pain and vomiting at the age of 10.
“I remember going to the hospital the first time and then waking up and they showed me the pictures on my stomach, and nothing really seemed off to me,” Jackson said. “But then we went the second time, and that one, I felt like people were more serious about it, and I just knew something was off.”
After visiting a new doctor in the Chicago suburbs, Jackson tested positive for Celiac disease after retaking the test. Celiac has no cure or treatment. It can only be prevented by a strict no-gluten diet. Jackson said his 10-year-old self didn’t take that news well.
“At first, I didn't really like it because I just stopped eating the foods I really liked,” Jackson said. “So, I had to stop eating certain candy and stuff for Halloween, and that made me pretty mad because I couldn't have foods that I liked.”
Jackson, now a freshman at Normal Community High School, said he hated not being able to eat KitKats and pizza, but said after four years, he had grown to live without them.
“I'm definitely doing my best to keep it out of my diet. I don't struggle with, like, the temptation of eating anymore,” Jackson said.
Celiac disease is often hereditary. That was the case here, even though Jackson's mother Rachele Ackerman didn't know it at the time. Ackerman said she always faced brain fog and fatigue but blamed it on being a working mom.
“I just kind of lived with it, but after Jackson's diagnosis, and as I started learning more about it, I just last year, was like, OK, I need to get tested. Let's just rule this out,” Ackerman said.
Taking a blood test in October and later a colonoscopy in late December, Ackerman also tested positive for Celiac disease. She has since been gluten free.
Common symptoms are associated with gastrointestinal issues, but symptoms can include fatigue, joint pain, and headaches. This is partially why Ackerman was surprised to find out she had Celiac.
Now, Ackerman and her son live on a strict gluten-free diet. There are difficulties but Ackerman said education about the disease can make their lives and others' easier.
They reached out to Gov. JB Pritzker to create awareness. The governor signed a proclamation declaring May as Celiac Disease Awareness Month. May 16 is also International Celiac Disease Awareness Day.
According to a study by the director of the Center for Celiac Research and Treatment at Massachusetts General Hospital, about 1% of the U.S. population has been diagnosed with Celiac disease. Doctors suspect that's a big undercount, because it is often undiagnosed.
That is why physicians recommend visiting a doctor before self-diagnosing. Dr. Yuliya Belopolsky is a gastroenterologist at Carle BroMenn Medical Center in Normal. She said patients’ lack of knowledge isn’t the only concern.
Some patients might feel they're informed enough to self-diagnose themselves. This can be harmful for several reasons, Belopolsky said. First, if a patient who has the disease restricts their gluten intake to prevent symptoms, they will have inaccurate results. But if a patient doesn’t have Celiac disease but limits their gluten intake, they are denying themselves necessary proteins.
Belopolsky said she hopes further awareness of Celiac disease could help speed up the process and help people get diagnosed faster.
“I do think creating appropriate awareness where if you think you have these symptoms, you should see someone so that you can get the appropriate testing and possible treatment,” Belopolsky said. "Or even if you think you have it and you get tested negative, it's an opportunity to see what else is going on.”
Belopolsky also warned that ignoring Celiac can be more dangerous than just stomach pain. It can lead to liver diseases and in rare cases cancer.
And with just a speck of gluten enough to trigger a reaction, education is key to preventing people from getting ill. This is the reason why whenever Rachele Ackerman and her son Jackson go to a restaurant, they have to be extra careful.
Ackerman said she often warns staff they can’t have gluten, and she explains the dangers of cross contamination.
“Confirming yes, it's gluten free, but making sure that they change gloves or if they bring you a salad and it had croutons, taking the croutons out of the salad, I still can't eat that salad because the croutons were already in there,” Jackson said.
Sometimes even with their best efforts, her son Jackson has gotten sick a couple of times. When a new pizzeria opened up in town, Jackson asked for a gluten-free pizza but 10 minutes later he was sick. Ackerman emailed the staff and found while the pizza crust was gluten-free, the sausage was not.
“Oftentimes gluten is hidden as a binding agent in different things,” Ackerman said. “Vegetables should be gluten free. You buy a bag of frozen vegetables. Manufacturers add flour to keep the vegetables from sticking together. You buy shredded cheese, lots of times they will add flour to the shredded cheese, so it doesn't stick together. For someone with Celiac that makes you sick, and it's not listed on the ingredients that there's flour in there.”
Incidents like these are a common obstacle that those with Celiac disease have to endure. Ackerman said there are some restaurants in the city that are Celiac-friendly such as Brass Pig and Five Guys.
While there are options out there for those with Celiac, the majority of restaurants are not accessible.
State Sen. Sally Turner, a lawmaker from Logan County, went to dinner with her staff one night. There was not a gluten-free menu for her staff member who has Celiac. All they had was a spreadsheet of ingredients for her to navigate through.
That’s why Turner pushed a bill that would make sure restaurants and food distributors are trained on Celiac disease. If passed, restaurant staff would have to be trained on what to do when food or cooking tools are exposed to gluten.
Turner said her bill could be a step in reassuring those with Celiac disease can enjoy their meals without fear.
“It’s really hard for people with Celiac disease to navigate through that system, and it’s very helpful for food handlers to know these things,” Turner said.
Turner's bill has passed the Illinois Senate and awaits a vote on the Illinois House floor.
Rachele Ackerman hopes the bill will pass so those with Celiac find some peace of mind.
"There's a lot of what's considered a comorbid condition,” Ackerman said. “And so, eating disorders are very common for patients with Celiac disease, because you associate, ‘I eat food, I get sick, so I don't want to eat food’. And so, to be able to go someplace and (say) ‘okay, I can safely eat this’ would ease a lot of anxiety.”
Ackerman also called on the Illinois legislature to pass a bill that would make medical insurance companies cover visits to trained Celiac nutritionists. Illinois lawmakers tried to push a similar bill in 2023 but were unsuccessful. While that bill is not currently in the General Assembly, Ackerman hopes their efforts will push future conversations.
Ackerman also said the weekly chore of groceries can be a challenge for those with Celiac. It can be difficult to find certain foods and Ackerman said she often has to order in advance.
And even if she finds things like gluten free bread, it can be expensive.
“Memorial Day is coming up, and so you want to have cookouts, so you're looking for gluten-free hot dog buns or burgers and to find them first is a feat,” Ackerman said. “But then the cost of it typically, prices have gone up, but it's anywhere from like $4.99 to $6.99 for a package of four hot dog buns compared to if you buy the regular ones, you may be spending $2 to $3 for eight (buns). So, to get eight gluten-free buns is over $10 compared to paying $2.”
On International Celiac disease Awareness Day, Ackerman and the Celiac Disease Awareness Foundation planned to work on future projects to help people suffering from Celiac.
