I once saw a comedian talking about taking a bite of his friend’s gluten free muffin, prompting his reaction “I have no idea what gluten is, but apparently it’s delicious!” If you’ve tried some of the often disappointing gluten free products available you get the joke. And if you’re one of the estimated millions of North Americans with celiac disease or millions more with it’s slightly less serious cousin, gluten intolerance, it’s no laughing matter. Gluten, a protein composite found primarily in certain grains might be the stuff of yummy baked goodies and delicious bread for some. For others it’s a nutritional landmine that at best can cause a wide range of uncomfortable symptoms and at worst can lead to serious malnutrition and disease.
Alexandra Anca, MHSc., RD is a Toronto-based registered dietitian specializing in Celiac Disease, an advisor to the Medical Advisory Board of the Canadian Celiac Association and Nutrition Advisor to the Toronto Chapter of the CCA. She also authored the Complete Gluten-Free Diet and Nutrition Guide. I spoke to her about celiac disease, gluten intolerance and the treatment of both.
Celiac disease is an autoimmune disorder that occurs when the body is unable to properly digest gluten in the diet. The villi, small hair like structures in the small intestine, are unable to do their job of grabbing nutrients out of the gluten containing foods resulting in malabsorption of important nutrients. To compound the problem those villi, which in healthy people stand up straight, get pressed down in people with celiac rendering them useless over time and causing permanent damage to the intestines. This can contribute to a host of symptoms as well as a higher risk of certain cancers and overall mortality rates. According to Anca, “In celiac disease, the immune system basically attacks the lining of the small intestine. The result is a wide range of gastrointestinal and extra-gastrointestinal symptoms commonly associated with other diseases, such as irritable bowel syndrome, anemia, joint pain, dermatitis, fibromyalgia, fatigue and migraines." In fact, the range and severity of symptoms is part of the puzzle in getting a proper diagnosis. There are currently approximately 250 symptoms associated with celiac disease and gluten intolerance, the most common of which are digestive problems (pain, diarrhea, constipation), body aches and cramps, headaches and behavioural problems in children.
Anca says the average diagnosis time from onset of symptoms for celiac is 9–10 years making it “one of the great pretenders in medicine — you can be diagnosed with many other conditions before physicians even consider celiac disease. Blood tests are typically used to screen for celiac followed by an endoscopy with biopsies to confirm whether the damage to the intestinal lining is compatible with celiac disease”.
The diagnosis of gluten intolerance is even more complicated since those people often test negative on all of the traditional celiac tests, prompting doctors to assess a different medical issue or even psychological disorders. But the news on that front is improving. A new study reported in the journal BMC Medicine shows that gluten “does indeed trigger a reaction in the intestines and immune system in people who don't have celiac disease and who test negative”. Lead author and medical director of the University of Maryland’s Center for Celiac Research, Allesio Fasano says, "for the first time, we have scientific evidence that gluten sensitivity not only exists, but is very different from celiac disease." And while gluten intolerance does not damage the villi and intestines, it can be the cause of severe and often debilitating symptoms. This news brings some hope that these patients will be taken more seriously and receive more appropriate treatment.
Some skeptics doubt the growing number of diagnoses of celiac and gluten intolerance as simply the “disease du jour,” but, according to Joseph A. Murray of the Mayo Clinic, “the incidence of celiac disease is rising sharply—and not just due to greater awareness. Tests comparing old blood samples to recent ones show the rate has increased four-fold in the last 50 years, to at least 1 in 133 Americans. It's also being diagnosed in people as old as 70 who have eaten gluten safely all their lives." He says “people aren't born with this. Something triggers it and with this dramatic rise in all ages, it must be something pervasive in the environment." He says one possibility could be the agricultural changes to wheat that have boosted its protein content.
So why not just self diagnose and try a gluten free diet? Anca warns against this practice since gluten must be present in the system to properly test for celiac disease. “It’s highly discouraged because going back on a gluten-containing diet in order to get a proper diagnosis is extremely difficult. If one goes on a gluten-free diet before proper diagnosis, antibody counts can decrease significantly and the lining of the intestine may heal, leading to false negative results. For those with celiac disease, the gluten-free diet cannot be taken lightly because it only takes about 1/70th of a slice of bread (essentially a bread crumb) to activate the autoimmune response. Therefore, accurate diagnosis is extremely important." And while a gluten free diet can be healthy, Anca says “wheat does provide fibre, B-vitamins and minerals. In general, most wheat-based products are fortified whereas the gluten-free counterparts are not,” so deciding on your own to adopt a gluten free diet may not be the best idea. “Having said that, some gluten-free grains like quinoa, teff and buckwheat are far more nutritious than wheat” and they’re gaining awareness and mainstream popularity.
And what of the implications for children? Recent controversy has surrounded the debate over a possible causal connection between gluten and autism in children with the most notable celebrity endorsement coming from actress Jenny McCarthy whose claims that she cured her son’s autism with a gluten free diet have come under great fire from the medical community. Anca says, “There is very little data on this from conventional medicine. However, a study published last year in the Journal of Pediatric Gastroenterology and Nutrition found that a high percentage of patients suffering from autism also had high rates of intestinal permeability (also known as 'leaky gut'). But children with autism on a gluten free diet had significantly lower intestinal permeability values compared with those who were on an unrestricted diet. This suggested that a gluten-free diet would be beneficial for those with autism spectrum disorders." And while Anca recognizes holding a child to a gluten free diet can be challenging in the face of birthday party cake and class pizza day, she suggests providing them with their own alternatives to take with them and checking out Toronto based group R.O.C.K. (Raising Our Celiac Kids) for more tips.
So, once you’ve been tested and established that you do indeed need to eliminate or limit gluten in your diet, easy peasy right? Just swap your bread and pasta and you’re good to go. Not so fast unfortunately. Gluten is also a pervasive binder used to create flavour and texture in everything from ketchup to toothpaste and soy sauce to lipstick. Enlisting the help of a nutrition professional is a good start. And the Canadian Celiac Association is a great place to find information on diet, treatment and tips for cooking and eating in restaurants. The good news is that as awareness increases so do options and while yes, we can all agree with the comedian that gluten may be delicious, now thankfully so can a gluten free diet.
For a comprehensive list of foods to avoid and which grains are safe to eat check out the Pocket Dictionary from the Canadian Celiac Association:
For tips on kids and a gluten free diet contact R.O.C.K at: