“Whenever I ate, I got really sick,” explains Shelby Schroeder a social worker in St. Louis city. “I’d have these horrible stomach aches to the point that I wouldn’t eat during the day unless I was at home.” Though she continuously asked doctors what was wrong with her, she never got an answer until a doctor discovered that Schroeder was also anemic, so she tested her for celiac disease.
“When those results came back she called me and was like ‘Stop eating all gluten!’” Schroeder remembers with a laugh. ”That was the first time I’d heard of celiac.”
Celiac disease is an autoimmune disorder that kills villi—nutrient absorbing protrusions in the small intestine, leading to malnourishment (hence Schroeder’s iron deficiency). When left untreated, those with celiac disease can develop osteoporosis or gastrointestinal cancers. Since a protein found in wheat, barley, and rye known as gluten triggers it the only known cure is going on a completely gluten–free diet.
Though it’s not clear why people get it “there is a genetic component,” explains Dr. Brian McMorrow in the Signature Medical Group at Gateway Gastroenterology. “So you’re born with that predisposition [to celiac] but the way I would think about it is if you’re never exposed to gluten you’re never going to develop celiac disease.”
Those with the pre-disposition may not show symptoms until later in life (though children can also have celiac) and when there are symptoms, they are often vague like stomach aches, anemia, fatigue, or diarrhea, which means it takes a while to be properly diagnosed. “I think we’re becoming better tuned at screening patients with blood tests,” explains Dr. McMorrow, “but patients without a family history without any of those serious symptoms may be diagnosed with other things earlier on or may not seek attention for a while.” Common misdiagnoses for celiac are irritable bowel syndrome or overactive bowel.
After being diagnosed, Schroeder went to a dietitian. “I didn’t realize at that point the extent of what no gluten means,” explains Schroeder who says that when she initially heard the diagnosis she was just happy to finally have an answer. “So I cut back on wheat but the dietitian explained that if you have a teaspoon or a whole loaf of bread it doesn’t matter.” Any gluten, even trace amounts, destroy villi.
“She was pulling out all of these magazines and guides,” continues Schroeder, “Saying you can’t have this flour, you can’t have that flour, you can’t have malt vinegar, you can’t have oatmeal…. She just went on and on and on and I was thinking ‘Oh my god, this is horrible! What a pain in the butt!’”
“It’s not easy,” explains Cathy Feldmeier a registered dietitian with St. Anthony’s who often counsels patients about celiac disease. “This is a major, major lifestyle change. I [try to] show patients that you really can have a livable diet with this and there are a lot of options out there that you can purchase to make this work.”
But gluten is in—well nearly everything. Imagine a life with no pizza, pasta, bread or brownies and that’s not even scratching the surface. And even if something is gluten-free there’s still the chance of cross-contamination, when traces of gluten get in something that's gluten free.
“Let’s say that you’re using your toaster and you’re using regular bread and now your husband, who has celiac disease takes his gluten-free bread and puts it into that toaster,” explains Feldmeier. “He’s basically contaminated the bread because you always have some little crumbs.” You also can’t share peanut butter, or jelly, or butter. Most oatmeal is normally processed in places that also process wheat and therefore has traces of gluten in it.
"I was at a conference for work," remembers Schroeder. "I was trapped at the hotel for three days and you have back to back sessions so I couldn't really leave to go anywhere. Breakfast was stuff I couldn't eat and lunch was sandwiches and other stuff I couldn't eat. So that first day, because they weren't aware there was a person with a gluten problem, I couldn't eat anything all day." She sighs. "That's when you get frustrated." Eventually they did give Schroeder a piece of chicken "but then they put it on a bed of pasta. So it was like 'Okay, well I can't eat it!' In one afternoon session they brought out sodas and nuts and I took the whole bowl of nuts becuase I was so hungry and I was shoveling them in." Schroeder adds with a laugh.
Dealing with the disease has made Schroeder resourceful. “I plan my meals ahead of time and I bring my own lunch,” she explains. “If I’m going out to dinner I have to go to a place where I can eat [like Maggiano’s, P.F. Changs or Corner Pub] or eat ahead of time. That’s a big trick. If you go somewhere like a happy hour or a party and you don’t know what’s going to be served there, eat ahead of time so you’re not starving to death while everyone else is loving the great hors d’ouevres.”
It’s hard though when Schroeder goes to someone’s house and they don’t understand her dilemma. “The common misperception is that it’s not a big deal,” she says. “It’s like ‘It’s your grandma’s famous recipe try it. She spent all this time making it.’ But I’m not just going to be sick for a day. It can make you sick forever.”
On the plus side, there aren’t too many nutrients that you miss out on giving up gluten. “I think for most patients, they miss good bread,” says Dr. McMorrow. “That’s a real struggle and it has a significant emotional impact. There have been some studies that show that after the diagnosis there’s an increase in depression.”
Despite her initial struggles with changing her diet, Schroeder started feeling better within a week and encourages her friends to get tested. “I think there needs to be increased awareness,” Schroeder says. “If you have an upset stomach or you have IBS or even if you have osteoporosis, it’s just a blood test to see if you have celiac.”
And while at first the diagnosis is a shock, Schroeder offers words of comfort. “In general, I’m not angry about having Celiac because it’s a disease I can control. I just don’t eat wheat. And, when you think about it, that’s not such a bad disease to have.”
For more information talk to your doctor. You can also visit Celiac.org or Celiac Disease Support Chat
