It was supposed to be the best summer ever. At 18, Marisa Fraimow, slight, pretty and sunny of nature, was looking forward to her high school graduation and to leaving the family home in Ardmore, on the outskirts of Philadelphia, for Pennsylvania State University.
Of course, she did have to get her wisdom teeth removed, which wouldn’t be fun. But that was it. At least, it was until her pre-college physical with her family doctor. That turned her world upside down.
Her mom, Lisa Fraimow, had asked the doctor to check for everything from vitamin deficiencies to antibody levels and her thyroid – the latter because Lisa was herself in remission from Graves disease, an autoimmune disorder that involves the thyroid. Marisa knew her mom was just anxious about her moving to a dorm nearly 200 miles away. Besides, she figured she’d be fine.
Blood test results showed otherwise. Marisa had practically no vitamin D, crucial for the development of healthy bones and teeth. What’s more, her system contained antibodies that indicate celiac disease, the hereditary autoimmune disorder in which the body virulently rejects gluten, a protein found in wheat, rye and barley.
Marisa couldn’t believe she had celiac disease – she felt fine. Tired, occasionally, but that was it. Now, on the cusp of college, she was already different from classmates she didn’t yet know. Her own body had turned against her.
Silent Celiac Takes a Toll
Marisa had a version of celiac disease known as “silent” or “latent” – people with it have no symptoms that point to a disorder affecting the digestive system. In fact, some may have no symptoms at all. Yet, even in its “silent” form, celiac disease can take a toll on multiple organs with varying of degrees of severity. The long list of associated symptoms includes skin rashes, mouth sores, osteoporosis, infertility and even lymphoma, a type of cancer that affects the cells in the immune system.
Exact statistics on how many people are walking around with silent celiac disease are hard to come by but, as demonstrated in scientific literature, a whopping 10 percent of those closely related to someone with celiac disease may have it without suspecting a thing. “If you have celiac disease,” says Dr. Peter Green, founder of the Celiac Disease Center at the Columbia University Medical Center, “it’s important that your family get tested, too.”
Before she was diagnosed, Marisa already knew about the presence of gluten in all sorts of foods, cosmetics and pharmaceutical products because her older sister Nadina, like so many North Americans, had eliminated the protein from her diet the year before. To support Nadina, she’d even done a senior class project on gluten-free desserts, creating recipes that included dark chocolate apple cake – her favorite.
But a crash course in the disease itself, one in the family of autoimmune disorders that also include multiple sclerosis, Type 1 diabetes and her mom’s own Graves disease, would teach this freshman a lot more.
Like how the rejection of gluten was causing damage to finger-like protrusions in the walls of her small intestine called villi, necessary for her body to properly absorb key nutrients like iron, folic acid and vitamins D and B12. Or how her slight fatigue could have been a sign all along. How the diagnosis is done in two phases: the blood screening and, if that proves positive, an intestinal biopsy. And how the only treatment is to go completely gluten-free.
This went against everything she had ever learned about diseases; it wasn’t like tonsillitis or the flu. Even though she didn’t feel sick, Marisa had to treat the disease by changing her diet, which meant changing her life.
Celiac disease specialists recommend going gluten-free as soon as you have the biopsy diagnosis rather than waiting until you start showing gastrointestinal symptoms. Better that, they say, than letting the damage progress. “If you follow people who test positive for the antibodies but have no manifestations of celiac disease, many of them will get symptoms sooner or later,” says Dr. Anthony DiMarino, chief of gastroenterology at Philadelphia’s Thomas Jefferson University Hospital.
And, as subjects in a study out of Tampere University in Finland discovered, going gluten-free just might improve your quality of life, even if you don’t realize it needs any improving. In a study presented at a medical conference in Chicago in 2011, researchers used blood tests to screen 3,031 people over the age of 18 who had relatives with celiac disease. None had any serious health complaints. The result: 40 tested positive for the antibodies associated with celiac. Of those 40, half were randomly assigned to go on a gluten-free diet while the rest continued to eat whatever they wanted.
The results were stark. Dr. Katri Kaukinen, a gastroenterologist and one of the study’s authors, reported that after a year, the subjects who didn’t change their diets showed no change in their digestive system and vitamin levels, while the gluten-free group showed “significant improvement.” As she explained to Allergic Living, they also enjoyed a higher, more energetic quality of life.
“Before, many had minor abdominal symptoms like gas, bloating, indigestion, loose stools or joint pain. Only after they eliminated gluten did they realize their problems were linked to it,” Kaukinen says.
Screening for Silent Celiac
Even if silent celiac symptoms are minor or not the typical gastrointestinal signs, the loss of nutrients can still affect physical growth and learning skills in children. Undiagnosed adults risk anything from bone fractures due to osteoporosis and eroded teeth enamel to infertility, skin problems and being preternaturally short.
The first step in screening for silent celiac – a blood test by your doctor – is simple and cost-effective, not to mention 90 to 95 percent accurate, according to DiMarino. For those with a close family member with celiac disease, a blood test is certainly worth taking, since the chances of having the disease are up to 8 percent higher than in the general population.
However, a sticking point is wait times for an intestinal biopsy – the second step in screening for a definitive diagnosis. In North America, celiac specialists advise you not to go on a gluten-free diet until a biopsy confirms the disease, since being free of the protein can lead to a false-negative result.
But a tour of online celiac message boards shows that people whose blood has tested positive for the antibodies are often waiting several months for an appointment with a gastroenterologist. When you think you’re onto a serious health issue, it’s an anxiety-provoking period.
A celiac diagnosis, of course, means the start of a gluten-free diet and that spells relief – at least to those who feel the symptoms. Maintaining the diet requires strict vigilance: reading every food package label and daily avoidance of cross-contamination with the myriad gluten-containing foods. That’s tough enough for those who will get cramping, bloating, diarrhea or migraines or other symptoms from gluten. Consider how difficult it is for those who feel no ill effects from gluten-containing foods.
“You try telling people who are asymptomatic to stop going out for beer and pizza, especially teenagers!” says Dr. Alaa Rostom, deputy chair of gastroenterology at the University of Calgary. Celiac’s symptoms are lousy, but getting them does compel you to comply.
Back in Ardmore, Marisa Fraimow had her biopsy the day before high school graduation. She was fortunate to get it done quickly, especially since she felt like her life was on hold until she could work toward becoming as healthy as possible. “I didn’t know enough about celiac disease to recognize mild symptoms, but I do know that less than a month later, I felt more energized,” she says.
Although nobody else in her family has tested positive for the antibodies associated with celiac, her home is now almost completely gluten-free. In the summer, she and her mom met with Penn State’s food services coordinator to ensure that food-service staff are well-trained in the special dietary needs of students and separately store both dry and frozen goods. Even her mom came away assured.
Now in the school’s liberal arts program, Marisa wants to work towards a greater understanding of her condition among her peers and maybe even make a career of it in the future. For a dessert lover, life is still sweet – even sweeter because it takes a special effort to have that dark chocolate apple cake and eat it, too. Marisa isn’t one to wallow in “Why me?” She says: “I think, ‘How can I live better?’”
Anemia Was Her Only Clue
All Rebecca Pitt, a nursing graduate, wanted to do that April day was donate to the blood drive at McMaster University’s medical center in Hamilton, Canada. She felt it was the right thing to do, but was told she couldn’t – because she was anemic. She’d been taking iron pills for six years after a doctor had found her hemoglobin levels too low, blaming it on her menstrual cycle. But the blood-drive nurse thought something sounded off, and urged Pitt to go back to her doctor.
Many tests and specialist referrals later, Pitt was told her blood contained the antibodies associated with celiac disease, and an intestinal biopsy confirmed the diagnosis. It was hard to comprehend: here she was, a normal weight and a size 6, and the doctor was telling her she was malnourished. What to do?
She didn’t want to continue poisoning her body but it was just so hard to give up foods she loved. In the end, she compromised, spending the six weeks in between the blood test and the biopsy saying goodbye to gluten – with gusto. “I even ate a whole plate of cinnamon rolls, thinking I would never be able to eat anything that good again,” recalls Pitt, who is now an ICU nurse. “I gained 5 pounds!” Since the positive biopsy, she has learned to manage the gluten-free diet well.
Today, Pitt is the mom of a baby girl – and often wonders what would have happened if that nurse hadn’t urged her to go back to her doctor. Would she even have been able to get pregnant, given that the disorder has been known to cause infertility in up to 8 percent of patients?
“I never got the nurse’s name but I consider her my guardian angel,” she says. “The diet has made a real difference in my life.”
When Celiac Disease Isn’t All in the Gut
Celiac’s Evolution: The Boggling Rise of Non-Gut Symptoms
First published in Allergic Living magazine, learn about the e-magazine here.