Find out all about celiac disease and living gluten-free.

Jenny Lass of Toronto would spend 60 minutes on the city's public transit system for her daily commute to work. Then one day she had to brace herself for the unthinkable: Jenny worried that she would soil herself. She suffered from diarrhea, which had escalated from every other day, to once a day, to all morning, to all day. Fortunately, she arrived at work just in time to race to the washroom, but she was exhausted and embarrassed. That was in 2000, when Jenny was 27. She was eventually diagnosed with celiac disease (CD), a chronic autoimmune intestinal disorder in which ingestion of gluten – a protein present in wheat, rye, barley and triticale – causes damage to the small intestine in genetically susceptible individuals. She has since made changes to her lifestyle and no longer experiences debilitating attacks of diarrhea.

Though not everyone with CD has the problem that Jenny had, the disease can often be unpleasant for the estimated one in 133 Canadians who have it. But scientists such as Dr. Mohsin Rashid, the associate professor of pediatrics in the division of gastroenterology and nutrition at Dalhousie University in Halifax, have reason to believe there is hope for those with the disease – even if a cure is still years away.

Rashid points to human trials that are currently underway in which a medication taken before a meal (of a normal diet) may help block the damaging effect of gluten on the intestine. Another approach being tested is treating food with an enzyme that will degrade the gluten so it loses its allergic potential.

Increased awareness of CD has also spurred researchers to find better ways to diagnose the disease early. A new product approved by Health Canada is the Biocard Celiac Test, a do-it-yourself blood test that can detect the presence of gluten antibodies in the blood – an indication that the body is fighting gluten.

Shelley Case, a registered dietitian and member of the advisory board of the Canadian Celiac Association, and the author of Gluten-Free Diet, reminds consumers that a blood test is only the first step toward a definitive diagnosis. The second is a small bowel biopsy, performed by a gastroenterologist, which will show if there’s been damage to the small intestine. As well, notes Case, the blood test and biopsy will give a false negative if your diet has been gluten-free, so don't change your diet before visiting your doctor if you suspect you may have CD.

Still, the only way to manage CD is with a strict, lifelong gluten-free diet. This is becoming easier each year thanks to a rapidly growing gluten-free foods industry in North America and better food-labelling policies. Case says there are now more than 3,000 gluten-free specialty products, and more are becoming available at mainstream grocery stores. And just this year, the federal government introduced new labelling requirements for food allergens and gluten sources in prepackaged foods. Even restaurants are getting the picture, says Case, who notes Pizza Pizza in Toronto now offers a gluten-free pizza.

The CCA has established communities of support, and they have also made a difference in the quality of life for Canadians with CD. Dale Franklin, a former member of the London, Ont., chapter of the CCA, says she swaps recipes, information, advice and stories with other parents of kids with CD, "so they don't have to repeat mistakes I've made, and vice versa."

What is celiac disease?
CD is not the same as a wheat allergy or wheat sensitivity. A person with a wheat allergy has an abnormal reaction to the proteins in wheat, causing eczema, rashes and even anaphylaxis. CD, by contrast, is an autoimmune condition in which the lining of the small intestine is damaged by gluten. 
A healthy intestine has tiny villi – or microscopic hairs – that absorb nutrients as food passes through your system. If you have CD, gluten will cause your immune system to attack the small intestine, resulting in inflammation and damage to the tissues. The microscopic villi in the intestine then atrophy and become flattened, unable to absorb healthful nutrients such as protein, vitamins and minerals.

Over time this autoimmune reaction to gluten can cause an array of disruptive symptoms. Most common are abdominal pain, gas or bloating, diarrhea and weight loss; fatigue, anemia, infertility, recurrent oral ulcers, bone pain and menstrual irregularities are also often reported. Additional symptoms in children may include irritability, vomiting, delayed growth and defects in dental enamel. Untreated CD can also increase the risk of osteoporosis and intestine cancer.

Doctors once considered CD a childhood disease, but they now know it can develop at any age. These days, says Rashid, most people with the condition are diagnosed when they are adults, although many are likely to have had symptoms since childhood. A recent Canadian Celiac Health Survey showed that, on average, adults with CD aren't properly diagnosed for nearly 12 years, and it suggested three reasons: CD has wide-ranging symptoms; physicians often misunderstand it, which means many Canadians may go a lifetime without knowing they are affected; or people may be misdiagnosed as having stress, anemia, chronic fatigue or irritable bowel syndrome.

One of the difficulties with diagnosis is that not all adults with the disease have the common symptoms, such as bloating and diarrhea. Anemia sent Barbara Metler of Timmins, Ont.,* to her doctor in 1996, when she was 40. After testing negative for colon cancer and stomach ulcers, she was diagnosed with CD when a small bowel biopsy showed damage to her intestine. "It was unexpected," says Barbara, who was otherwise asymptomatic. A bone-density test later revealed she had the bones of an 80-year-old, the result of her not absorbing essential calcium earlier in life. Since her diagnosis, Barbara has built up her bones with strength-training exercises, and now takes calcium and vitamin-D supplements and lives a careful gluten-free lifestyle.

People with other autoimmune diseases, such as type 1 diabetes, are also at greater risk of developing CD, though researchers don't understand why. Dale says her son Wade already had type 1 diabetes when he was diagnosed with CD just before his sixth birthday. "I remember thinking, What's gluten? Are you telling me he can't eat more things?" she recalls.

How to keep the disease under control
The most effective way to treat CD is to remove gluten from your diet. For most people with the disease, the absence of gluten will improve all symptoms and heal intestinal inflammation. But, says Rashid, those with CD must adhere strictly to living gluten-free, and do it for life. Even a small amount of ingested gluten can re-inflame the small intestine, which may take a while to recover.

Living gluten-free can be difficult, since the staples of a typical North American diet are wheat-based, and not all sources of gluten are obvious. For instance, gluten may be hidden in food products such as soy sauce, tomato sauce and potato chips; and in ingredients listed as seasonings, dextrin, MSG and more (though more stringent labelling regulations are changing that). It can also be in medicines or supplements.

The good news is that many foods are naturally gluten-free: meats, fish, poultry, eggs, legumes, milk products, fruits, vegetables and rice. While wheat, rye, spelt and barley must be avoided in all forms, there are healthy, tasty substitutes for these grains, such as millet, amaranth, buckwheat and quinoa. As well, ground flaxseeds, almonds and legumes can be substituted for gluten flours.

*Name and city have been changed.

Another CD-friendly flour is Vinifera, a new Canadian product made from leftover grape skins from Niagara-region wineries. Vinifera is high in fibre and antioxidants and adds colour and flavour to gluten-free baked goods. To use, you can replace about one-quarter cup (50 millilitres) of gluten-free flour with one-quarter cup of Vinifera for every two cups (500 millilitres) of gluten-free flour used.

Oats, once considered off-limits for those with CD, are now deemed safe to eat as long as they have not been cross-contaminated with wheat (that is, grown in the same fields, shared in containers or processed in the same facilities as wheat). Two Canadian companies now grow uncontaminated oats: Cream Hill Estates and Only Oats. Both sell their products online and through specialty shops.

More gluten-free products, such as baked goods, pizza doughs and pastas, are now available to consumers. These gluten-free foods are usually made with white rice flour, potato starch, tapioca flour and cornstarch – all of which are low in B vitamins, fibre and protein. Case suggests you look for products enriched with riboflavin, thiamin, niacin and iron or made with more nutritious flours such as amaranth, beans, flaxseed, quinoa and teff.

To develop a healthy gluten-free diet, Case recommends two steps.

1. Visit a registered dietitian who has expertise in CD. To find one in your area, contact the CCA or go to the Dietitians of Canada website.

2. Learn how to identify sources of gluten in foods, and find a local CD support group so you’re plugged into the latest news and product information.

Celiac disease and kids
Helping a child with celiac disease feel like a normal kid is a tough challenge for parents. Children with CD can't eat birthday cake, sandwiches, pizza or hotdog buns, making it hard for them to fit in with other kids. Dale Franklin, whose son Wade, now 15, was diagnosed with CD at age six, says people were afraid to have Wade in their home for fear of doing something wrong. But once she educated his teachers, friends' parents and other family members about CD and Wade's needs, they were more at ease. "People aren't unkind on purpose, it just scares them," she says. Dale also spends extra money on gluten-free snacks, such as granola bars and cookies, that look and feel like ones for regular kids. "His emotional well-being is as important as his physical well-being," she says.

Dr. Mohsin Rashid, the associate professor of pediatrics in the division of gastroenterology and nutrition at Dalhousie University in Halifax, recommends involving your child in the buying and preparing of gluten-free foods. "Be creative with recipes and make gluten-free foods available for special occasions such as birthday parties, camping trips, sleepovers, etc.," he adds.

Janet Dalziel, president of the Canadian Celiac Association (CCA), recommends giving a stash of gluten-free treats to your child's teacher to distribute when the class has a celebration that includes treats, or in case your child forgets her lunch. The cafeteria is too risky due to cross-contamination, and because those with CD need to read labels, they can't know if foods from vending machines are safe.

The response to accidentally eating gluten varies dramatically from person to person. Shelley Case, a registered dietitian and member of the advisory board of the CCA, says a reaction to gluten can vary in duration from four to 48 hours. Some people will experience headaches, bloating, cramping and diarrhea, while others may have no symptoms, but either way, the small intestine and other organs are still being damaged. Case recommends educating all caregivers in the family, including grandparents who love to indulge their grandchildren ("They think one cookie can't hurt," she says) and babysitters who may not be as knowledgeable or careful as full-time caregivers.

Other recommendations
• Use squeeze bottles for condiments such as ketchup and mayonnaise to avoid cross-contamination.

• Store all gluten-free products in separate containers clearly labelled with stickers. Keep them in a separate cupboard and certain area of the fridge.

• Avoid buying products from bulk bins as the risk for cross- contamination is high.

• Help your child meet other children with CD so he will realize he's not alone. The CCA is a great way to connect with other celiac kids in your area.

Gluten-free grains and flours
• Amaranth
• Arrowroot flour
• Buckwheat
• Chickpea flour
• Cornmeal
• Flaxseed
• Green pea flour
• Millet
• Oats (pure, uncontaminated)
• Quinoa
• Popcorn
• Potato flour
• Rice
• Rice flour
• Soy flour