Highlights from the Ottawa National Conference

By Jodie Stevens

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At our pizza and desert fundraiser Sunday, Jodie Stevens presented her highlights from the conference.  Below are her notes from her presentation in case you missed it.  Thanks Jodie for an informative presentation!

CCA National Conference – May 2011

  • The 30th Annual National Conference of the Canadian Celiac Association was hosted in Ottawa, ON in May 2011. There were a number of great speakers and an excellent vendor area.  A few gluten-free product updates: Chex cereal will be hitting Canadian grocery stores in June 2011 in select flavors, as well, Betty Crocker cake mixes will be available in Canadian grocery stores in July 2011.
  • Next year the National Conference will be hosted here in Kelowna, BC! Vendors and Celiacs alike have expressed much interest!

“The Future of Celiac Disease: Therapies and Routes to a Cure”

  • Dr. Daniel Leffler is the Director of Clinical Research at the Celiac Center at Beth Israel Deaconess Medical Center at Harvard University.
  • Dr. Leffler discussed the prevalence of Celiac Disease (CD) based on current research:
    • 1% of population worldwide has CD
    • 40% of general population carries the gene for CD
    • The 1% and 40% difference is not well understood at this time
    • He stated that the Gluten-Free Diet  (GFD) is good, but not perfect (as a treatment for CD)
      • Challenges faced when on a GFD include the following:
        • Cross-contamination/hidden gluten
        • Cost
        • Social/professional Life
        • Diet education & health
        • Access
        • Label reading (literacy, print size, understanding)
        • Health
        • Psychological well-being
        • The modern age of CD began around 1950
        • Therapy progress has been slow in the last 60 years because of these perceived beliefs:
          • Rare disease
          • Highly effective treatment
          • Lack of consumer interest
            • Now: more patients -> more interest -> more research
            • A number of clinical trials are underway in a request for CD treatments & cures.
              • However, clinical trials cost approximately $80 million and take approximately 10 years to complete (require patience)
              • Possible treatments discussed include:
                • Larazotide
                • AIV-003
                • Avaxia
                • Nexvax
                  • In various phases of clinical trials, most are not to be used as a replacement of the GFD, but more for “just incase situations” (similar to a lactase pill)
                  • Treatment vs. Cure
                    • CD is one of the best understood autoimmune diseases
                    • Treatments are forthcoming, what about a cure?
                    • A cure in 20 years is possible with the strong understanding of CD
                    • The understanding of CD and a potential cure could provide a foundation for cures for other autoimmune disorders, such as, Rheumatoid Arthritis or Diabetes
                    • The key to progress with CD:
                      • Research into any disorder is based on PERCEIVED client need
                      • No progress without participation
                      • There are many ongoing projects which will directly improve the lives of individuals with CD

“Pure Porridge Puzzle”

  • Beth Armour is a dietitian and one of the founders of Cream Hill Estates
  • Oat products are closely maintained because of cross-contamination issues
  • Maintaining purity in oats is difficult because of common crop rotation and the similar appearance between oats and other grains
  • Pure oats are the responsibility of many people
    • Grower/Supplier, Government, Consumer, etc.
    • Grower’s responsibility
      • No gluten for 2-3 years in a field in which gluten-free (GF) oats are to grow
      • Purity of seed
      • Dedicated or thoroughly cleaned equipment
      • Government’s responsibility
        • Needs consistency – what is gluten free? 20ppm vs. 5ppm
        • Consumer’s role
          • Ask questions and be informed
          • Price
            • Premium price (at least double) for pure oat seed
            • Premium price for processing seed (especially in dedicated facilities)
            • Summary
              • Many people are involved in the process of pure oats
              • Needs to have purity
              • Need to define what is GF

“Dental Enamel Defects and Celiac Disease; another piece of the puzzle”

  • Dr. Ted Malahais is a dentist and has conducted research on dental enamel defects and CD with Dr. Peter Green
  • CD associated dental defects include:
    • Delayed eruption of teeth
    • Canker sores
    • Darker enamel
    • White striations
    • Notches on teeth
    • Bilateral and symmetrical enamel defects can be a symptom of CD
    • A few GF toothpastes include:
      • Sensodyne, Aquafresh, Crest, Colgate, Toms of Maine
      • Summary: The dentist is a valuable ally in the detection of changes in the oral environment which may suggest the presence of CD

“Health Canada’s Food Directorate initiative to enhance the protection of celiac individuals in Canada” & “Regulatory enforcement of mandatory labeling and gluten-free claims”

  • Dr. Samuel Godefroy is the Director General of the Food Directorate, in the Health Products and Food Branch, Health Canada.
  • Dr. John Lynch is the Executive Director of the Food Safety and Consumer Protection Directorate of the Canadian Food Inspection Agency.
  • New food labeling regulations underway (Bill 1220)
  • Regulations require the mandatory “source” declaration of common food allergens and gluten using simple, plain language in English and French
  • The source of common food allergens and gluten must be in the ingredient list or after the statement “Contains”.
    • “When the statement ‘contains’ is present on a label, this statement must be complete and identify all common food allergens, gluten sources and added sulphites at 10ppm and above in the prepackaged product”
    • Also, “The name of the source of protein must be identified in the common name of all hydrolyzed plant proteins (HPP)”.
    • Purpose: To continue to minimize risk and maximize choices
    • New food labeling regulations to commence on August 04, 2012
    • Until then, CFIA urges industry to declare all food allergens and glutens

“Professional Advisory Board Reports”

  • Dr. Connie Switzer is the Chair of the CCA Professional Advisory Board, has done a lot of work with the Canadian Celiac Association (CCA)
  • Jim is the Executive Director of the CCA
  • Dr. Switzer
    • Discussed where we are at and where we are going with CD
      • Emphasized the importance of: Awareness, Advocacy, Education, Research (surrounding CD)
      • Bill 1220 (in 2012) will improve the lives of those with CD (the new food labeling regulations)
      • She encouraged research initiatives
      • Stated there was a 70% participation rate in research studies amongst CCA members
      • Publications on CD have increased dramatically over the last decade
      • Jim
        • Discussed the new Gluten Free Certification Program (GFCP)
        • CCA has developed the GFCP in consultation with consumers, industry, and government personnel
        • The purpose of the GFCP is to label certifiably GF foods with a distinctive and recognizable label (shopping becomes safer, more reliable, easier)
          • Five steps are involved in the GFCP

“What’s new in adult and pediatric celiac disease?”

  • Dr. Peter Green is the Director of the Celiac Disease Center at Columbia University in New York, he is the author of “Celiac Disease: A Hidden Epidemic”
  • He also discussed CD prevalence:
    • 1/133 Americans
    • 1/18 North African children
    • 1% worldwide
    • 1% adult/children
    • 1% men/women
      • Woman diagnosed 2-3x more frequently
  • Prevalence of CD has increased (40% carry the gene)
  • The new face of CD
    • Both genders are affected equally, many different races affected, big & small
    • Many factors play apart in CD: genetic factors, environmental factors, gluten
    • Those who have followed a GFD after diagnoses:
      • 66% of those underweight gained weight
      • 54% of those overweight lost weight
      • 47% of obese individuals lost weight
      • The burden of CD:
        • 10% greater chance of developing an autoimmune disorder than the general population
          • However, an early diagnosis (<20 years) = decreased risk of autoimmune diseases
  • Malignancies
    • Small intestinal adenocarcinoma 33x
    • Esophageal cancer 11.6x
    • Non-Hodgkin’s Lymphoma 9.1x
    • Melanoma 5x
    • Papillary thyroid cancer 23x
      • Have thyroid exam (palpation)
      • TSH blood work may not be a sufficient indicator
  • Good news = the longer one is on a GFD, the more decreased their risk
  • Follow-up care Dr. Green suggested:
    • Do to the risk of associated diseases
      • Have a good physical exam (annually)
  • Interval testing (individuals with CD and family members)
    • Celiac individual – annually?
    • Family – every 3-5 years (kids more often)
  • Inadequacies of GFD
    • SEEK EXPERT CARE
  • Mentioned multi-vitamins
    • Particularly Calcium and Vitamin D
    • Trend/Popularity of GFD
      • New Zealand
        • 4 000 celiacs
        • 50,000 on GFD!
        • Gluten related disorders
          • CD (gluten ataxia)
          • Wheat sensitivities
          • Gluten intolerance
          • Public awareness (general population vs. chef)
            • Heard of CD 47% vs. 77%
            • Heard of gluten sensitivities 67% vs. 89%
            • Heard of peanut allergy 88% vs. 93%
            • Mental illness and CD
              • Increased anxiety and depression
              • Not many studies done on this topic at this time
              • Planning to do more studies
                • Functional brain imaging studies
                • Onset of symptoms = diagnosis
                  • Now 3-4 years (Celiac Centre research)

“Living with a Gluten-Free Diet”

  • Marion Zarkados is a dietitian, she proposed the study “Living with a GFD” and is presently the principal investigator collaborating with Health Canada on this study.
  • Marion shared some information found in the study:
    • Intentional gluten consumption
      • 68% never intentionally ate gluten
      • 19% intentionally ate gluten once or twice during previous year
      • 13% intentionally ate gluten once a month during previous year
      • Dietary difficulties
        • Food purchasing (labeling)
        • Food preparing
        • Eating away from home
        • Difficulties with eating away from home
          • Don’t want others to feel sorry for me 65%
          • People think a little gluten wont hurt me 45%
          • Feel that I am a burden 35%
          • Avoid going to social events involving food 30%
          • Limited choices at fast food restaurants 85%
          • Limited choice of restaurants 75%
          • Worry cooks not trained 65%
          • Restaurants can not provide info on gluten 35%
          • Emotional difficulties
            • Frustrated
            • Overwhelmed
            • Isolated
            • Confused
            • Marion suggested some strategies to overcome these difficulties:
              • Read every ingredient list
                • New regulations should help with this
  • Store GF flours and products separately from flours and products that are not GF
  • Use CCA product dictionary
  • More strategies:
    • Have snacks on hand
    • Talk to others about CD and GF
      • Support groups, expert opinions
  • Offer to bring a dish
  • Take home message:
    • Be advocates about CD
    • Help those who are newly diagnosed
    • Study to be published very soon

President’s Report for May 2011

by Irene Thompson, Kelowna Chapter President

Irene Thompson

Irene Thompson, Chapter President

Just when we thought spring was here we got a surprise! Not just yet as some of us opened our eyes and guess what, everything was white with snow. This is the middle of April right!!

We have had our first meeting of 2011 and what a turn out. I could not believe all the food at our potluck. You all out did yourselves.

I went to Kamloops for their fundraising dinner on April 14th. It was held at Lynx café. If you are in Kamloops they have a gluten-free menu that is quite extensive. I want to say well done to the group in Kamloops as they did a wonderful job and had great support for this fundraiser.

The group in the Kootenays’ is also very busy supporting the members in that area. I believe I heard that they have been bringing samples of bread to the meetings for the celiacs to try. I think that bread is one of the hardest food items to find a replacement for. Let us know what you come up with that is really good.

We are working on getting some Awareness material put together for 2011. Please do remember that we have all that material on the web-site for 2010. It can all be downloaded at: http://celiac.ca/media_downloads.php  The theme for this year is The Right to Safe Food. We need to get information out to all the facilities that serve people in care homes, hospitals, jails etc.

The Conference in Ottawa is coming up fast so if you are still thinking of going, now is The Time to fill out that form and reserve your spot.

Our volunteer for 2010 is David Fowler. David was not at our last meeting so we could not present him with this honour however I did phone him to let him know about our choice. David came out of nowhere and next thing I knew we had this great website. David has also helped me with the postcards that will be given out at the Ottawa Conference. Thank-you David for all your hard work we are very lucky to have you as a member of our group.

I want to say that our thoughts and prayers are with Drew, Angela and the girls. I am so sorry to hear of the loss of your Mother, Drew. Friendship is love with understanding.