In early June, I attended the Canadian Celiac Association’s annual National Conference in Ottawa. I was invited to speak about Holistic Approaches to Celiac Disease Management. You can access the notes for my talk here.
My main message was this: in order to optimize wellness when living with celiac disease (or any chronic disease), you must address all areas of health – diet, movement, sleep, emotional, social, spiritual (and others that are important to you). If you don’t feel supported by your health care provider(s), keep searching until you have an excellent team that empower you to be the healthiest version of you!
Conference Highlights
Canadian Celiac Association Professional Advisory Board Q&A Session
Q: Do you recommend the NIMA sensor for people with celiac disease?
A: This is where the technology is going! However, as of yet, there is not any good quality 3rd party data demonstrating the efficacy of this sensor reliably detecting gluten in food.
Q: What do you recommend for long-term follow-up for people diagnosed with celiac disease?
A: The CCA has developed a resource to give to doctors regarding follow-up for people with celiac disease. You can download the document here.
Dr. Marios Hadjivassiliou, Neurologist specializing in gluten-related ataxia
Neurological manifestations of celiac disease: What’s the latest?
What I learned: Early diagnosis is ESSENTIAL to prevent potentially irreparable damage to the brain. If you are still struggling with neurological issues and follow a gluten-free diet (GFD), Dr. Hadjivassiliou recommends that you first have your antibodies assessed and make SURE you follow a very strict GFD. Dr. Hadjivassiliou also said that physiotherapy may help to re-train the brain.
David Congram & Frank Massong - Working to Ensure Bean, Grains & Lentils are Safe
Q: If a food isn’t labelled gluten-free, doesn’t have any disclaimers regarding gluten (i.e., in a facility, or equipment etc) – is it safe to eat?
A: If haven’t declared, then should be free from gluten. However, preventive measures need to be put in place. If a company fails to declare gluten, it could lead to class 1, 2, 3 recall. The regulations are much more strict in Canada than the US because the US doesn’t consider undeclared gluten on same level as undeclared allergens as in Canada.
Michael Abbott, Health Canada – Food labeling and regulations
Q: What if a product has a gluten-free claim, but also says may contain wheat, (a) how does the happen and (b) is it safe to eat?
A: If product consistently tests below 20 ppm, companies can validly label the product gluten-free. However, if test results show a low level of gluten is present (i.e., less than 20ppm) – and based on the ingredients, it could be from wheat – they the company must say ‘may contain wheat’ for people with wheat allergies (different from celiac). The presence of ‘may contain wheat’ doesn’t mean that 20 ppm or more of gluten are allowed, the gluten-free claim still needs to be valid.
Health Canada is working on it, recognize causes a problem, working on clarifying
'May contain wheat' label – if no gluten-free claim, not sure how much, could be very high so not recommended to consume.
Christine Kopko – Canadian Food Inspection Agency
Food safety or labeling concerns can be reported on the CFIA website
CFIA – reaction to pre packaged food, or bad food labeling/undeclared allergens - report about food safety in following areas:
Restaurant + food services
Grocery store or retail food conditions
Safety or quality of food product
Food labeling
http://www.inspection.gc.ca/food/information-for-consumers/report-a-concern/eng/1364500149016/1364500195684
Dr. Joseph Murray
Celiac can happen at ANY age – even if test negative serology for years, can seroconvert and develop the disease.
GMO – not the source of increase in celiac disease. While wheat has changed over the years, through conventional methods not GM. However, significant rise in celiac could be due to ATI increase which may be a stimulant for the immune system.
Celiac & thyroid – very commonly occur together because both autoimmune issues. He recommends to check thyroid function every 4-5 years because often develop thyroid issues over time.