Professional Advisory Council “Meet and Greet” Notes

From the 2018 National Conference – Ottawa – June 8th

The 2018 National Conference started with a panel discussion including members of the CCA Professional Advisory Council answering questions from the CCA Chapter executives. Members of the panel included:

  • Dr. Don Duerksen
  • Shelley Case RD
  • Dr. Jenny Zelin

Discussion regarding gluten-free flours
There are many myths about flours and a lot of discussion regarding arsenic in flour. The glutenfreewatchdog.org provides credible information regarding this. The bottom line is that you should not base your diet on rice, especially brown rice which has more arsenic. Alternate your grains so that you get a variety of grains in your diet.

Soy – There is a theoretical concern regarding hormones and soy. Again variety is important so you do not overload on any one grain. Soy in itself is not harmful.

Oats – Newly diagnosed should wait up to 18 months when the tTG normalizes to include gluten-free oats in the diet. The gluten-free certified oats should be introduced slowly due to the increase in fibre in the diet. The Health Canada website provides good information on gluten-free oats.

Nima Gluten Detection
The Nima device is used to detect gluten in food. Third party validation data is lacking on the Nima device, therefore it is suggested that “buyer beware”. This type of technology is where this industry is heading, however, testing must be done by experts to ensure it does what it
says it will do.

What information should I give my doctor when first diagnosed?
Direct the doctor to www.celiac.ca and give them handouts of position papers that are available there. tTG follow-up is helpful but not 100% accurate as to what is going on. The Celiac Follow Up Care Resource brochure will assist the doctor in what testing should be done on an on-going basis to manage celiac disease. Panel members stated that dietitians and dentists are very helpful in diagnosing celiac disease (CD).

What percentage of the general population are affected by celiac disease?
Canada borrows the data from the US which indicates approximately 1% of the population has CD. Test for CD before testing for anything else Canada is developing a registry for Registered Dietitians for CD. Training for undergrads is also a priority. Handouts are on the national website that Dietitians can download.

How long does one have to eat gluten before testing?
There are many different answers quoted to patients. Generally, 4-6 weeks of a slice of bread per day is adequate. If a patient has been gluten-free for a long time, more time on gluten may be required.

What symptoms affect the brain/body when eating gluten?
Symptoms vary from person to person. You must always beware that the cause “might be something else”. The longer an individual is off of gluten, usually the more sensitive they are to gluten exposure.

Please comment on tTG remaining high for an abnormally long time?

It takes different people different times to come within the normal tTG range. The number one reason for not normalizing is they are unaware of gluten exposure. Refractory celiac disease is rare. This is when the individual does not respond to a gluten-free diet.

Travel
Best to do your research before you go. Find out what the food safety standards are in the country that you are going to and it is often useful to contact the local Celiac Association and check out their website.

Wheat Starch
The inclusion of wheat starch in food is allowed in Europe. In Canada, today, this does not meet our standards. Additional processing is required to remove the gluten. Canadian law requires that anything that contains a gluten source is not allowed.

Pregnancy
If a mother is celiac, there are no known adverse effects to the baby, however, the fertility of the mother may be an issue in those with undiagnosed celiac disease. Current research indicates that gluten should be introduced to babies’ diets at approximately 6 months of age.

Is it possible to have elevated tTG and not be celiac?
Yes, there are other conditions that may cause an elevation. It is important that the biopsy provides 4-5 samples to ensure proper diagnosis.

How long does gluten stay in your system?
Gluten is found in the stool for approximately 24 hours and in the urine for 6 hours.

Celiac Disease in the News – December 2018

by Val Vaartnou

The following are summaries of research in progress or completed from credible medical journals and medical sites. Links are provided where further information can be found.

Celiac disease and eosinophilic esophagitis linked A large analysis of more than 35 million patients found an intriguing connection between celiac disease and eosinophilic esophagitis (EoE). Out of the 15,000 patients in a database pulled from 360 U.S. hospitals who had been diagnosed with EoE, 2 percent also had celiac disease.

The numbers translate into a likelihood nine times larger of finding celiac disease in a patient with EoE compared to a patient in the normal population.

For more information: https://www.allergicliving.com/2018/06/07/whats-the-link-betweeneoe-and-celiac-disease/


Prebiotics can help celiac symptoms Research published in the Journal of Clinical Gastroenterology found that a 6-week probiotic treatment is effective in improving the severity of IBS-type symptoms in celiac disease patients on strict GFD, and is associated
with a modification of gut microbiota, characterized by an increase of bifidobacteria.

For more information: https://www.ncbi.nlm.nih.gov/pubmed/29688915


Viruses can lead to activated celiac disease A growing body of research suggests that viral DNA or proteins introduced into the body can contribute toward the development of serious diseases long after the initial viral infection has passed. And now, research by a team from
the Cincinnati Children’s Hospital shows that exposure to the Epstein-Barr virus (EBV), best known for causing mononucleosis, appears to boost the risk of developing seven other diseases in individuals who inherited predisposing gene variants – including celiac disease.

For more information: http://www.iflscience.com/healthand-medicine/the-virus-that-causes-mono-linked-to-sevenautoimmune-diseases/


Questioning the link between antibiotics and celiac In contrast with existing research, a recent study published in the journal Jama Pediatrics found that antibiotics taken during a child’s first four years of life were not associated with the development of celiac disease or type 1 diabetes, even if the child was genetically predisposed to the development of either condition.

For more information: https://mykidsfoodallergies.com/isthere-a-link-between-childhood-antibiotic-use-and-celiacdisease/


Celiac disease can indeed strike anytime in life From childhood to late life, diagnosis of celiac disease is critical and should not be ignored. That’s the message for patients and healthcare providers from two recent studies.

In the first, researchers from Italy concluded that the number of patients with celiac disease worldwide is increasing, “thanks to better environmental conditions that allow children with celiac disease to survive longer.” In the second, scientists from Finland and the United Kingdom found that one in four celiac disease diagnoses is made in people 60 years or older. Still, 60 percent of patients remain undiagnosed because their symptoms, including tiredness, indigestion and reduced appetite, are blamed on older age itself.

For more information: https://www.beyondceliac.org/research-news/ViewResearch-News/1394/postid–106300/


Gluten-free food not so gluten free in Melbourne

A first of its kind study led by Institute researchers and City of Melbourne environmental health officers has detected potentially harmful levels of gluten in foods sold and served as ‘gluten-free’ across Melbourne, Australia. The undercover study revealed one in 11 samples of ‘gluten free’ food tested were contaminated with gluten at levels that could prove harmful to people with celiac disease.

For more information: https://www.wehi.edu.au/news/illuminate-newsletter/june-2018/melbourne-gluten-freestudy


US study finds restaurant gluten-free food not always gluten-free

Based on more than 5,600 gluten tests over 18 months, the investigators determined that 27 percent of gluten-free breakfast meals contained gluten. At dinner time, this figure hit 34 percent. The rise could reflect a steady increase in gluten contamination risk as the day unfolds, the researchers said.

For more information: https://www.webmd.com/digestivedisorders/celiac-disease/news/20181008/study-somegluten-free-restaurants-fall-short#1


Ensuring dietary compliance among children and teenagers

New research on children and adolescents with celiac disease examined their dietary habits to determine the factors responsible for non-adherence to a gluten-free diet.

Compliance with the diet is difficult at all ages but particularly for teenagers due to social, cultural, economic, and practical pressures.

For more information: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5775619/

CCA Survey On Long-Term Care Facilities

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The Canadian Celiac Association (CCA) is conducting a survey of the Canadian celiac community to gain perspective on positive experiences or challenges facing people with celiac disease currently living in a long-term care facility or those feeling anxious about moving themselves or family into one.

  • The survey takes approximately 6 minutes to complete
  • Information provided on the survey will be anonymous and confidential
  • Findings will be used by CCA to identify gaps, suggest recommendations and/or tools to improve the quality of care for community members living or heading into a long-term care facility.

To complete the survey, click on the following linkhttps://www.surveymonkey.com/r/LTDCeliac

For more information or if you have any questions about the survey, please contact Zaynab Al-Nuaimi at [email protected].

CCA Holiday Survival Guide

holiday web banner (2)

Click here to download your CCA Holiday Survival Guide!
Don’t just survive… THRIVE!

For individuals with celiac disease or non-celiac gluten sensitivity, the holidays can be a time of trepidation.
Every function and event has food!
Does the host really know what it means to serve truly gluten-free food?
If this is a child’s first holiday season, how can you help them stay safe and have fun?

We’ve asked some of our experts to give you some handy tips.
Download your copy and share with your friends, families and party hosts
to help make this holiday season the best ever for everyone!

Thank you to our generous sponsors, Udi’s Gluten Free and Schar Canada.

Chapter Meeting Minutes November 4, 2018

CANADIAN CELIAC ASSOCIATION
Kelowna Chapter Minutes
November 4, 2018

In attendance: 18 people, at the Winfield Senior’s Centre. A delicious Christmas lunch was prepared by Creative Catering.

Secretary’s Report: Nothing to report

Treasurer’s Report: Marilyn Hurst reported that as of August 31, 2018, we had $7,518.57 in our account.

President’s Report: Irene Wiseman said that the chapter needs a President, Secretary, and Treasurer to be able to continue. We would need to have at least 2 meetings a year. Irene asked if anyone was interested in taking on these positions. If we don’t get people to fill these positions, the chapter will close as of March 1, 2019. We will honour our advertising commitments, which go until the end of February 2019. Our website (done by David Fowler) will also shut down with the chapter. As it stands right now, this will be our last meeting. Selena deVries, our dietician, does Wellness groups 4 times a year. People could still get together then, or meet in their own communities for coffee/a meal. There was also a discussion about the importance of awareness, research, and labeling.

Vice President’s Report: n/a

Newsletter: The newsletter was sent out in October 2018. Barb Hicks has a change to make to the bread recipe that was in the newsletter. Barb will send the information to Marie Ablett.

Hospitality: n/a

Membership/Supplies: Not available for this meeting. Membership is dwindling.

Help-line: Nothing to report.

Product Information: There are lots of great products out now that have the CCA gluten-free certification logo on them.

National Report: The CCA has a new restaurant program, to certify places as gluten-free. The CCA does testing and gives eligible restaurants a gluten free logo. The CCA is also testing different grains and grain flours re: cross-contamination. The CCA will be moving to a smaller office, to save money.

New Business: Our chapter donated $100.00 to Melissa Secord, CCA executive director for a celiac charity run. She sent a thank you to us. We did a donation to the Salvation Army and gave money to David for doing our website. We gave $10,000.00 to Mary Young at UBCO (University of BC, Okanagan campus), to do research on the effects of celiac disease on young people. Nora Eaves sent a thank you card to the executive of our chapter. We received a generous anonymous donation today from a member – thank you to the donor. We will have an executive meeting re: leftover chapter money. We will get member input. There was a discussion about doing a donation to the Salvation Army or local food banks (we would prefer that the money was used to buy gluten-free food, if possible). Irene thanked the members and executive for coming to the meeting. We did a raffle for the door prizes and gift baskets.

Meeting Adjourned: Joan Maddison moved that we adjourn at 12:45 pm; seconded by Marie Ablett. All in favour.

Free Webinar: Diabetes and Celiac Disease

free celiac webinarDiabetes and Celiac Disease: What to eat?

November 21, 2018      12noon – 1 pm EST

You’re invited to attend a free webinar in support of Diabetes Month in partnership with Diabetes Canada

To register, click here.

Our Speaker:

Jennifer Sampson
Jennifer is a Registered Dietitian and Certified Diabetes Educator who joined the team at the Leadership Sinai Centre for Diabetes at Mount Sinai Hospital in 2006. She works with patients with type 1 & type 2 diabetes, gestational diabetes and diabetes in pregnancy. She has extensive experience working with T1 diabetes and insulin pump therapy and also sees people with celiac disease.
Jennifer has co-authored the Diabetes Canada’s reference manuals (‘The Essentials’ and ‘Advancing Practice’) for healthcare providers.

This webinar will be recorded and later posted to CCA’s YouTube Channel.

If you have any questions, please email Helen Matteer. 

Caramel Squares

Courtesy of the Vancouver Celiac News June 2018

These are sweet but oh so good.  The recipe can be cut in half for one 9” x 13” pan.

Ingredientscaramel-squares

  • 64 Kraft Caramel candy
  • 1 cup Carnation Evaporated milk
  • 3/4 cup brown rice flour
  • 1/2 cup tapioca starch
  • 1/2 cup potato starch
  • 1/4 cup sweet rice flour
  • 1 tsp xanthan gum
  • 2 cups gluten-free rolled oats
  • 1/2 tsp soda
  • 1/2 tsp salt
  • 1 1/2 cup butter
  • 1 cup chocolate chips
  • 1 cup chopped pecans or walnuts

Directions

  • Melt caramels with the evaporated milk on low heat.
  • Mix together brown rice flour, tapioca and potato starch, rice flour and xanthan gum with
    oats, soda, and salt.
  • Work butter into flour the flour mixture with pastry cutter or your hands. Work it until it
    become crumbly.
  • Take half of crumbs and press into two 9 x 13” pans making a thin base.
  • Bake for 5 minutes at 350 degrees F.
  • Let cool for 5 minutes and then pour caramel mixture over the baked base.
  • Sprinkle chocolate chips and nuts over the caramel and the crumble the rest of the rest of
    crumbs over the top.
  • Bake for 20 minutes or until golden.
  • Cool, cut while still warm and then place in the fridge to harden.
  • Store in the freezer until needed (they are actually good frozen.)

Gluten Concerns in Home Renovation Projects

By Jo Anne Murray

There have been a number of concerns expressed by members of the CCA Facebook page about the presence of gluten in drywall joint compound. Because I was having a few repairs done in my own home, I decided to research some of the industry standard products to determine their safety from the gluten perspective.

I’ll talk about the restoration products first. The major suppliers of many of the products currently on the market claim that there are no gluten-containing ingredients in any of their products. I included standard products marketed by Home Depot, Lowe’s, Rona and spoke to and/or exchanged emails with sales reps and other company spokespeople. Some of the products available are produced in Canada exclusively, others share some cross-border exchange. DAP was the only company that indicated that wheat starch is still used in a couple of their USA plants and that the wheat starch is actually tested for gluten content and the gluten content measures at a level well below 20 ppm. It is likely safe to say that the current drywall joint compounds should pose little to no concern to members of the celiac community.

Most of the information that I received from these spokespeople also encouraged that the products they have available that have the reduced dust properties are likely more desirable for projects where any health issues are of concern as the remnants from sanding these particular joint compounds fall directly to the floor with very little circulating in the air.

Now I’ll cover a few concerns for the demolition phases of any renovation projects. There is little information available about products that were used in previous decades and the potential for gluten content in these products. The only way to be certain of their safety would be to  have samples tested for gluten content before any major demolition took place. However, a more significant concern is that of asbestos in the drywall joint compound and the plaster used in lath and plaster finishing as well as texturing paint and stippling products.

Because of the insidious nature of lung injury from asbestos particles, it is recommended that existing materials be tested before any demolition takes place and if asbestos is present that abatement should be undertaken by companies qualified in the safe removal of
the asbestos-contaminated materials.

Needless to say, proper management of asbestos removal would assure that any potential gluten content would also be safely removed.

So what construction years are of greatest concern for asbestos? Asbestos has been extensively used in the construction industry for more than a century. It was banned for use in Canada in textured paint and drywall joint compound in 1979 – but – it still made its way into many of these products until the early 1990s.

If you are inclined to disregard the asbestos concerns and undertake the DIY projects anyway, there are a number of steps you can take to limit exposure to asbestos and gluten if it is present. There is personal safety equipment available to protect your health.

There are also many ways to limit the dust exposure escaping to areas outside the actual renovation area.

  • Seal off the renovation area, including sealing off the hot and cold air returns to your furnace.
  • Choose a time of year when the furnace is not likely to be running.
  • Cleanup must be managed to prevent contamination of equipment and the remainder of the building.
  • Talk to the renovation professionals so you fully understand the methods to prevent asbestos contamination. By managing the risks for asbestos exposure, you automatically manage the risks for any potential gluten exposure.

Another consideration for gluten lurking about in a renovation project is wallpaper. The commercial glues used in most pre-pasted modern wall coverings are developed from the same types of glues that are used on envelopes. However, prior to ~1970, wallpaper was applied using wallpaper paste that was made at home from wheat flour.

There are still many homes that have layers upon layers of wallpaper, and many of those layers will have wheat based wallpaper paste holding them in place. Care must be taken in their removal to contain the dust from these projects to the area of restoration and minimize the potential for its being circulated through the furnace ducts and other air movement equipment (fans, dryers, dehumidifiers).

Gluten might be a consideration in any renovation project but will be overshadowed by the asbestos concerns in most renovations. When asbestos is addressed in your project, any gluten exposure would be included in the prevention of general contamination concerns.

Please protect your health when you undertake your DIY projects.

2018 National Conference Recap

Courtesy Calgary Chapter

The CCA’s Ottawa Chapter hosted the 2018 National Conference and it was a tremendous success! Not only did we have nearly 300 delegates (more than we’ve seen in years), but we also were able to break new ground by having a presentation on neurological issues and celiac – a rapidly developing but lesser-known area of celiac disease research.

Held at the majestic Shaw Centre in downtown Ottawa, the location was great for tourism – right by Parliament Hill, the Rideau Centre, the Byward Market and more. The conference received rave reviews from attendees and we thank the Ottawa Chapter for all the work put into this event. If you weren’t able to make it, we’re pleased to provide some of the key points from three featured speakers.

Dr. Marios Hadjivassiliou gave us a thrilling presentation on the neurological manifestations of celiac disease.

  • “Classic” celiac disease is no longer the norm. More and more we are seeing neurological issues. It’s possible to have no digestive issues, just neurological issues, and be celiac. Going gluten-free is critical to help alleviate these symptoms.
  • Early diagnosis when gluten ataxia is present can help save the patient from much hardship.
  • Balance issues and vertigo are red flags. Celiac can also interfere with speech, coordination, strength.
  • Gluten neuropathy – loss of sensation/tingling, can be numbness and pain. Accounts for 26% of all neuropathies.
  • Gluten ataxia equally common between men and women, study shows. Only 50% of them will be celiac.
  • With gluten ataxia, we can see damage to the cerebellum – damage that is often permanent.
  • Gluten ataxia in some cases linked to refractory celiac disease, which can be very difficult to treat.
  • There is a strong connection between headaches and patients with celiac disease. Some ataxia  patients get horrific headaches. You wouldn’t automatically assume that’s celiac!
  • Antibodies from gluten exposure can cross-react with neural tissue. The cerebellum is what’s primarily impacted for ataxia in these cases, but other areas of the brain can be impacted as well.
  • Some neurological patients show a poor response to the gluten-free diet. Reason most often is poor diet adherence, but there could be other issues as well.
  • Some patients say they feel like there’s a big cloud over your head, things are hazy, as if you’re just going through the motions of life.
  • Physiotherapy has been found to be able to help when there has been gluten ataxia damage to the cerebellum. Easier for younger people.
  • We know that depression and anxiety levels are higher in those with celiac disease.
  • Studies in our clinic found that half of people with ataxia showed enteropathy.
  • Ataxia patients get MR spectroscopy scans, show great improvement for celiacs once the gluten-free diet is adopted.
  • Age of diagnosis for a classical-symptomed celiac is 44, versus 53 for those with the neurological presentation.
  • Even if you’re on a strict gluten-free diet, gluten ataxia can persist. Depends on the patient and antibody profile.
  • Seizures can be associated with celiac. Specific type of epilepsy, seems to be more common in Italy and Argentina.
  • Since screening programs implemented in Finland, fewer cases of dermatitis herpetiformis have been reported.
  • If a celiac still has neurological symptoms on the gluten-free diet, he or she should repeat the blood work and the endoscopy. If everything looks healed/compliant, there may be a need to use immunosuppressants.
  • Some patients with schizophrenia showed improvement on the gluten-free diet, but we can’t say that there is a clear link. More research is needed.

 

Dr. Joseph Murray provided an overview of the latest research from the world of celiac disease.

  • There are drugs that can damage the intestine to make it appear like celiac. There are other conditions that can also mimic the damage. Beware.
  • People with celiac disease should test their thyroid function every 4-5 years, as there is a strong link between celiac disease and thyroid disease. Both are autoimmune.
  • Cannabis is soon to be legal in Canada. Cannabis is better than over-indulging in alcohol and better than smoking cigarettes, but there are still negative impacts to watch out for. There has been no research on whether cannabis could help people with celiac disease.
  • Whether global warming is impacting celiac, who knows. It may be changing how wheat grows, how it adapts, etc.
  • In northern climates, we see more multiple sclerosis, just like we see more celiac disease.
  • Perhaps related to vitamin D? More research is needed.
  • If you’re a mother who is diagnosed with celiac, test your children NOW. Before you turn your house totally or partially gluten-free.
  • Being “very positive” on the celiac tTG blood test doesn’t really impact the level/severity of symptoms. Positive is positive.
  • Celiac was considered a rare disease in the past. We found 0.2% in testing in the 1950s. Definitely far higher now  1%, or 5x what it was.

 

Dr. Justine Dowd presented her research, partially funded by the CCA, on evidence-based holistic approaches to celiac disease management.

  • Many people with celiac disease are misdiagnosed with IBS first. Or some, like me, are “lucky” enough to have both.
  • I struggled for a long time with infertility and was misdiagnosed. Getting finally diagnosed as celiac led to huge improvement.
  • Those who adhere the best to the gluten-free diet are those who were in dire straits when diagnosed, awful symptoms. They do not want to take any chances at going back to how things were.
  • We need to retrain our nerves so that we can feel well. Brings in the idea of self-compassion.
  • There is a strong connection between gut health and mental health. Lots of research in that area. More incidence of depression, anxiety and other mental health issues among those with celiac disease.
  • Research shows that people are more likely to be kind to others than to themselves. Self-compassion is needed, giving ourselves the same kindness. Mindfulness over overidentification, common humanity over isolation.
  • We’re looking at exercise and effect on microbiome. Does being active make a difference?
  • Vagus nerve is key – connects gut and brain, promotes rest and digestion. Also need to reduce stress as much as possible – and cope with it, where elimination is not possible.
  • We have over 1,000 different bacteria species in our gut. Strong link between exercise and gut health.
  • Can be higher risk of excess abdominal fat, high blood pressure, high blood sugar with celiac patients. May be due to excess consumption of processed GF foods. Can lead to metabolic syndrome.
  • The app @myhealthygut is free to get started, and has additional features available ($). The dietary tracker and journal can help to figure out why you may still have symptoms. Then you can email it to your health care provider.
  • For newly diagnosed, we need to teach them self-regulatory skills. That’s what she is researching at the University of Calgary.

In addition, the conference included presentations on nutrition, gluten-free lentils and grains, and baking GF and vegan, as well as updates from Health Canada and the CFIA.

Next year’s conference will be in the Toronto area, likely in late May. Stay tuned for more details!

Kelowna Celiac Is Shutting Down

sad

sadKelowna Celiac held elections at our AGM November 4th.

Our current executive did not seek re-election as each has served for many years (some 10+ years).  Unfortunately, no one stepped forward to fill any of the vacancies.

Therefore the chapter is closing forever effective March 1, 2019.

This website will continue to run until March 15th to meet our obligations to our current sponsors.

Thanks to all those who supported Kelowna Celiac in the past.

View photos from Sunday’s meeting below.

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