When Celiac is Silent
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 this past June. 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.
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.
Next: Going Gluten-Free