It seems as though there are an infinite number of resources out there about celiac disease, but how do you really know what to trust? How do you interpret all of the new research being published everyday? To help answer these tough questions, we've called on Janet Dalziel, the President of the Canadian Celiac Association and she's given us some top-notch advice for sifting through the barrels of information on the web, as well as insight about some of the latest research.
Enjoy this wonderful advice and if you think of more questions, submit them anytime to firstname.lastname@example.org. All of the questions you see answered below were submitted by readers just like you!Question 1. There are so many online resources for celiac disease on the Internet. How do I know which are the most trusted sources of information?
Answer from Janet: That is an excellent question because there is a lot on the internet that is opinion and not fact. I would recommend, for medical information, sites that are clearly affiliated with respected organizations such as universities, hospitals, government agencies, celiac centers or national patient support groups which have professional medical advisory boards to back up their statements. I would be careful about any .com sites, not because they are always suspect or because they are profit-making, but because I need to know who backs up the information they provide. I think one has to be less picky about online resources for recipes, restaurant and travel recommendations as these are obviously not based on science but personal appeal. But beware of those forums where people seek advice from others. I have seen quite a few instances where someone asks a sincere question about diagnosis or diet which is then answered incorrectly by well-meaning but ill-informed participants.
Question 2. I was diagnosed with celiac disease last month. I had never heard of it before and now it seems like everywhere I go someone knows someone else with celiac. Is it a new disease or something we're just learning about?
Answer from Janet: Actually, it’s an ancient disease, known to the Greeks and Romans, though they did not know what caused it. It seems as if it’s everywhere now because diagnosis of celiac disease is starting to improve. That’s because of the blood tests that came out in the 90s and because those of us who averaged 11 years or so to finally get diagnosed are trying really hard to get the word out. We do not want others to suffer unnecessarily or die prematurely from one of the many serious associated conditions. While it may seem that it’s the latest fad disease, remember that somewhere around 90% of the people who have it remain undiagnosed. You can expect to continue to hear more about it as we ramp up our efforts to raise awareness.Questions 3. There has been a lot of chatter on listservs recently about breast feeding helping prevent development of celiac disease. Is this true? Where can we learn more?
Answer from Janet: I learned at the 13th International Symposium on Celiac Disease held in Amsterdam in 2009 that this is one of the burning questions the researchers would love to be able to answer. The truth is that nobody knows for sure but the guideline for infant feeding that they agreed on was to introduce very small amounts of gluten into the diet of infants between the ages of 4 to 6 months while still breastfeeding. However, they were not able to define what was a very small amount and they were not able to say whether this would actually prevent celiac disease or merely delay it in genetically predisposed children. So, there is no definitive answer doctors can give to this question at this time, which is not a comforting thought for many parents. And research in this area is not easy to design, since nobody would allow experiments that might harm babies. We are hoping that longitudinal studies on the children born in Sweden in the time when infant feeding guidelines inadvertently produced a mini-epidemic of celiac disease in that country will provide some answers, eventually.Question 4. Can you explain enriching gluten-free foods in Canada? What does it mean? Is it safe? What is actually done to the food?
Answer from Janet: Enriching foods in Canada is not new and it is safe. Table salt is iodized, milk has vitamin D added and wheat is enriched with folic acid, a very important supplement. Foods are enriched, meaning that vitamins or minerals are added, in an effort to prevent illness and poor health that may arise from inadequate diets. When I was a child, we had to take cod liver oil during the winter. This was our parents’ way of enriching our diet with the vitamin D we couldn’t get from sunshine for a few months; it tasted awful. The issue with gluten-free foods is that they are mostly not enriched, so that celiacs do not get the same nutritional value from their breads or pastas or pizzas and need to pay more attention than non celiacs to vitamin and mineral supplements in order to play catch-up. That being said, celiacs might want to support those manufacturers of gluten-free foods who have moved to enrich their products. That information appears on the label.Question 5. What types of resources does the Canadian Celiac Association offer patients? How can patients help support the organization?
Answer from Janet: The CCA offers support in the form of education for patients and health care workers on diagnosis, symptoms and treatments. As you know, the gluten-free diet is complicated and expensive. Did you know there are other treatments being investigated? Our 28 chapters and their satellite groups offer peer counseling to individuals and groups, local meetings to share strategies, listen to invited experts and provide a social outlet, and newsletters that highlight local resources such as restaurants and shops as well as recipes and other articles of interest. We are truly a community of celiacs helping other celiacs.
We work with government agencies to improve food labels, wait times for testing and assurances that our food is safe. We support research into celiac disease in Canada through our annual awards and also in partnership with others. We work with food manufacturers to improve the availability and variety of gluten-free foods in the market. Our major focus for the next year is increasing awareness of celiac disease with our doctors. We are the best source of accurate information on developments in the celiac world in Canada. Our Professional Advisory Board of expert doctors and dietitians, all volunteers too, make sure that no incorrect information gets out there from us.
Patients, and families and friends of patients, can support the CCA by joining as members and/or donating to us at www.celiac.ca. We are a nationally registered charity that is run on a shoestring by volunteers with a very small staff. Some patients join when they are diagnosed, learn what they need to know and then drop out. That doesn’t help us when we are advocating with government groups or talking to major food manufacturers or answering questions from the media. They always want to know how many of us there are, so I would say, please join and then stay a member. Size matters. We are the only national voice for celiacs in Canada, which means we need the support of everyone out there concerned about celiac disease.