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Those who live with celiac disease know how easy it is to be glutened. Canadian Leslie Morrison was shocked to be diagnosed with the chronic disease 1 1/2 years ago, although it did explain the years of bloating and fatigue. But adhering to the gluten-free diet has proved a journey of trial and error as she juggles work as a researcher for an investigative TV news program and being a parent of two kids.
For days when she doesn’t have time to prepare her own lunch before heading to work in downtown Toronto, she has scouted out restaurants with gluten-free menus. One even trumpets itself as “wheatless and meatless.” Still, Morrison figures she is being glutened about once every three weeks – including one episode after trying the so-called wheatless, meatless place.
“I’m a researcher and every time I get glutened, I go looking for answers. It really messes with your head trying to figure out Where you went wrong when, in the end, I’m not sure you can pinpoint it.”
She’s often left to wonder: Was it a few errant crumbs? Was it something her kids brought home? A chef who was careless with her order? Worse, what kind of damage is this doing to her body?
These sentiments are echoed by others with celiac disease. In June 2014, Beyond Celiac (formerly the National Foundation for Celiac Awareness) asked followers of its Facebook page a simple question: Do they know when they’ve been glutened? In just a couple of days, the question prompted about 350 responses, all saying ‘Yes!’ and speaking of emotions from anger to powerlessness and fear. The symptoms described ranged from bloat to brain fog or, as Marie Panesko of Washington state put it: “I get stupid.”
“About seven years ago, I had an employee with celiac disease and I remember thinking, ‘Really, your dinner is ruined because your gluten-free pasta was stirred with the same spoon used in a dish that contained gluten?’” says Panesko, who was diagnosed in December 2013. “I have apologized. I didn’t get it. Now I do. Boy, do I ever.”
Times are changing for celiac disease. Before Alice Bast was diagnosed more than two decades ago, she saw 22 doctors who dismissed her symptoms, which included migraines, reproductive problems, diarrhea, joint pain and relentless fatigue. When the president of Beyond Celiac founded the organization in 2003, her main concern was to raise the condition’s profile and get people properly diagnosed.
Eleven years later, it’s time for the message to change. Now, the organization must ensure the general public understands that going without gluten is the only treatment for the condition. To that end, Beyond Celiac has a training program for food-service establishments (called GREAT Kitchens). Its aim is to ensure that the proper safety procedures are in place, and the chance of glutening mistakes are hugely reduced.
The learning curve for the food-service industry is complicated by the fad dieters who have embraced the gluten-free diet as their own. Marlow-Ravelli sometimes feels her well-being is being compromised by the anti-gluten bandwagon. When you become yet another of a legion of diners requesting that food be prepared a certain way, staff may not understand that, for you, this is not simply a preference.
Even Bast still encounters first-hand evidence of the scale of the awareness task. For instance, she recently met a notable chef at a fundraising event. He mentioned doing a gluten-free cooking segment on The Food Channel, yet wasn’t informed about celiac disease. Bast took this as an education opportunity, explaining the symptoms she’d suffered every day before being diagnosed with the disease, of her stillborn child and two miscarriages. The chef was shocked. “I didn’t know that a gluten-free diet was connected to a disease,” he said. Now, he does.
Bast feels it’s important to get across the message that, with celiac disease, eating gluten-free is not a choice but a health necessity. Ask lots of questions when you’re dining out. Don’t be shy and have the courage to say ‘no thanks,” and walk out of a restaurant if you aren’t happy with what you’re told or how you’re treated.
“People need to speak up and if they get glutened, they need to complain. Restaurants track complaints and they act on them,” she says from her Philadelphia office. For the person with celiac disease, “avoiding gluten is the equivalent of a diabetic having to take insulin,” she says. “While we have hope for a future with additional medication, it’s our only medicine right now.”
While she drives home that message, researchers like Murray are working hard in anticipation of a day, sooner rather than later, that the diet will not be the only answer.
“I have a ragweed allergy and I could move to Alaska, Ireland or Hawaii where I likely would not need any medications. But as well as trying to avoid the pollen, I also take medications that lessen the effects it has on me,” says Murray, the lead investigator for Alba Therapeutics’ larazotide acetate. “People with celiac disease shouldn’t be any different. They should have options.”
As larazotide acetate moves to phase 3 testing, Murray is also at the helm of other key research. He and colleagues at centers in Finland and the United States are working to develop ALV003 – a drug (funded by Alvine Pharmaceuticals) that’s a mix of two different digestive enzymes that break down gluten. It would be the celiac equivalent of a Lactaid pill, meant as a complement to the gluten-free diet, not a replacement. Other types of research in progress include a different oral enzyme therapy and a vaccine that could increase gluten tolerance in people with celiac disease.
Back in Durham, Marlow-Ravelli’s pregnancy was starting to show for real late in the summer of 2014 – and while eating for two, she was taking even greater care. Although she has missed the foods she’s had to give up, especially Krispy Kreme donuts fresh from the oven, she knows those days are behind her. Still, she dreams of a future where, if she unwittingly ingests gluten, she will be able to take a pill to neutralize its effects.
“I think about it so much that I can hardly wait,” she says. “But I will.”
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