Dennis learned to scour ingredients labels on foods and to be diligent eating outside her home. With vigilance, the rash soon disappeared. It was reasonable to assume that the gastric symptoms – bloating and alternating diarrhea or constipation – would go away, too. But oddly, they didn’t.

Dennis, who was 25 at the time, knew that she’d worked hard to be gluten-free – it had to be something else. She squared her shoulders and began to experiment, eating small amounts of different foods to gauge her body’s responses. Dairy was definitely causing her to feel bloating. It turned out that, along with celiac disease, she’d become lactose intolerant, which meant she was unable to properly digest the sugar found in dairy products.

“I could eat yogurt and get away with hard cheeses,” says Dennis, a dietitian who holds a Master of Science in nutrition and health promotion and helped to found the celiac center in 2004 at Boston’s Beth Israel Deaconess Medical Center. But in those early months, Dennis had to cut most dairy products out of her diet.

She is not alone. One out of every 100 people in North America is thought to have celiac disease while Dr. Peter Green, the director of the Celiac Disease Center at Columbia University, says that between 10 to 20 per cent of those with the autimmune disease also have differing degrees of lactose intolerance – creating a double diet whammy to manage.

Gluten’s Internal Toll

While research on the relationship between celiac disease and lactose intolerance is scant, an intriguing Italian study was published in the journal Digestion in 2005. In it, researchers screened 54 people who had tested positive for lactose intolerance but showed no other symptoms for celiac disease, and a control group of 50 blood donors.

Those who had the antibodies associated with celiac disease underwent further intestinal biopsies to see if there was damage to the villi, the finger-like projections that line the intestinal wall and act as gatekeepers for nutrients to enter the body.

The findings were startling: 24 per cent of the patients with lactose intolerance had damaged or atrophied villi, a sure sign of celiac disease, compared to a mere 2 per cent of the control group. Today, Dr. Peter Green says there’s a “very sensible recommendation” that all patients who test positive for lactose intolerance should be examined further for celiac disease before they are placed on a dairy-free diet.

He is concerned, however, that too many doctors and dietitians automatically advise lactose intolerant patients to avoid dairy – a kneejerk response that fails to take into account that celiac disease may be the real culprit.

By shortening or completely flattening the villi, celiac disease disrupts the uptake of life-sustaining nutrients, and can lead to other serious conditions – from malnutrition to anemia, osteoporosis and even cancer. The villi also contain lactase, the enzyme necessary to process lactose, the sugar in dairy. So when the villi are damaged, dairy intolerance is often the result.

Next: Understanding secondary lactose intolerance

Mute and truculent, the boy sat across from Dr. Alessio Fasano. His parents had brought the 5-year-old to see the pediatric gastroenterologist at the University of Maryland because of he suffered from bloating and other gastrointestinal problems. But the child had autism spectrum disorder and the only way he could express the discomfort he felt was through violence, through throwing things and pounding his little fists.

It was the mid-1990s. Fasano, who’d recently moved to Baltimore from Italy, gently drew the boy’s blood to test for antibodies linked to celiac disease, an autoimmune condition in which the body virulently rejects gluten, a protein in wheat, barley and rye products. When the test, and later an endoscopy, both proved positive, he prescribed the only treatment for the disease: a gluten-free diet.

Over the next six months, the boy transformed in such dramatic fashion that his speech therapist was spurred to write Fasano a letter. “What did you do?” she asked. “I’ve been treating him for three years and couldn’t get two words out of him. Now, he doesn’t stop talking!”

For Fasano, now head of the university’s Celiac Disease Center and a star in the world of celiac research, the solution had been simple.

“It was like this boy was living in a parallel world, trying to communicate with others through a thick veil,” he says. “He did not have to make up developmental milestones so much as have that veil lifted. Once it was gone, there was no stopping him.”

While few turnarounds are as extreme as this boy’s, the case does demonstrate how the body can react to gluten in severe and unexpected ways, far beyond common symptoms such as diarrhea, constipation and stomach bloat.

His interest piqued, Fasano reviewed small studies of gluten’s association with autism and keenly observed his own patients for patterns. This led him to the preliminary observation that a gluten-free diet may help about 20 per cent of the children with autism spectrum disorder or ASD. This is the catch-all term used for mysterious developmental conditions that range in severity and are characterized by varying degrees of social deficits and repetitive behaviors.

Not that the kids with a response to gluten have undiagnosed cases of celiac disease; rather, Fasano suspects gluten sensitivity. This is a relatively new medical diagnosis with a wide range of symptoms similar to those seen in celiac disease, but without untreated celiac’s association with osteoporosis, infertility and other serious health issues.

“We can’t help all kids with autism,” Fasano cautions of the gluten and ASD research. “But that help, when it comes, can be pretty dramatic, not just for the child but for the whole family.”

Next page: Investigating the ‘leaky gut’

“There is tremendous confusion when it comes to these disorders,” explains Dr. Alessio Fasano, the head of the Celiac Disease Center at the University of Maryland and one of the authors of a new guide on how to define them, published in the journal BMC Medicine.

Like wheat allergy and celiac disease, gluten sensitivity occurs in reaction to a protein found in wheat, barley and rye. Unlike celiac disease, the reaction is not an autoimmune response, in which one’s immune system sees gluten protein as intruder and will initiate a protective response that damages the small intestine.

Nor does it lead to the development of osteoporosis, neurological issues or other autoimmune diseases – as celiac disease can. But gluten sensitivity can still be horribly uncomfortable and painful. It’s a condition that Fasano says is related to “the older, innate” immune system that is not as sophisticated, modern as the adaptive immune system, which is the one linked to the other conditions on the spectrum.

To add to the confusion, symptoms of gluten sensitivity may start and stop without warning.

The new recognition of this condition should lead to speedier diagnoses for patients who complain of symptoms but test negative for celiac disease and wheat allergy. It also helps to explain why such patients who eliminate gluten from their diets despite the negative test findings do feel better.

“We’re at the same place with gluten sensitivity that we were almost 20 years ago with celiac disease,” Fasano says. “We’re just beginning to understand how it affects certain individuals.”

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

The next, he is racing down a nondescript hallway to an office where 6-year-old Megann lies, unmoving. Her skin is white and her lips, dark blue.

“There was nothing, none of that spark. She died before my eyes,” he says.

Now, more than a year after Megann Ayotte Lefort’s death, the child’s father is determined to make sure that something similar does not happen to any other child.

Lefort is angry that Quebec doesn’t have mandatory school procedures to ensure that teachers and other school staff are trained and ready to deal with asthma and anaphylaxis emergencies. And he is upset that the only party singled out in a coroner’s report about Megann’s death, which was recently released, was the Montreal fire department. (This is because there had been a failure that night to check that a piece of equipment on the fire truck – a pediatric ventilator – was working.)

For Lefort, the findings in Coroner Hélène Lord’s report are not enough. To him, the decision to not even mention the school’s anaphylaxis and asthma protocols, never mind to ask for a review of the staff’s knowledge of emergency procedures and the use of life-saving tools like the epinephrine auto-injector, seems tantamount to saying that what happened was OK.

“She could have lived,” says Lefort who, in the emotional aftermath of Megann’s death lost his job a caretaker at a condo building and has been making ends meet by working at a car wash. “The school was well aware of Megann’s allergies (to dairy products) and her asthma. There was a ventilator always on hand. I’m sure there was an EpiPen. Everything about that night was wrong. Everything.”

Join the Quebec Anaphylaxis-Asthma Law Campaign

No one disputes that his daughter had a history of severe asthma and anaphylaxis to dairy. Megann’s asthma triggers included molds, cats and cigarette smoke; when she was younger, she had been hospitalized 13 times for severe bronchospasm – as the coroner’s report notes.

Lefort says he read in the police and coroner’s reports that: his daughter had complained of chest pains in the weeks before her death and that Josée Ayotte, Megann’s mother, had chalked that up to pressure from going back to school. Megann had already had two doses of Ventolin that day for her asthma and had merely nibbled on a submarine sandwich her mom bought for her for supper before dropping her off at 6:15 p.m. at the school’s daycare.

Next Page: Many Questions Arise