CCA National Conference 2016 Summary

By Mark Johnson and Judy Campbell

From June 24-26, 2016, nearly 200 people from right across the country converged on St. John’s for “Waves of Change…Oceans of Possibility”, the 2016 CCA National Conference. This was the first time the CCA gathered in Newfoundland and Labrador and many delegates took the opportunity to do some sightseeing; many extended their trips by arriving early and/or departing late. The time of year was ideal with whale watching on the menu as well as checking out some icebergs! The weather was just lovely.

Following a delicious Friday evening gala dinner, complete with Newfoundland-themed entertainment, things got started Saturday morning with our excellent speaker lineup. Here are key points from the various presenters.



Celiac Disease and Gluten Sensitivity: Similarities, Differences and Uncertainties

Dr. Daniel Leffler
Associate Professor of Medicine, Harvard University
Director of Research, The Celiac Center, Beth Israel Deaconess Medical Center, Boston

Dr. Leffler started by saying how happy he was to be visiting Canada, and the province of Newfoundland and Labrador in particular. He emphasized that Canada should be proud of the accomplishments of the CCA, because in the United States there is no unified voice advocating for people with celiac disease and non-celiac gluten sensitivity.

Some good news: celiac disease is better understood than other auto-immune diseases. It is a multi-system autoimmune disease. It is not an allergy, or an intolerance – it is an autoimmune disease and needs to be treated seriously as such.

There are a lot of misunderstandings, though. The three top myths on celiac disease? 1) It is rare. 2) It is not a serious condition. 3) The gluten-free diet is a perfect treatment. And as we know, people often confuse celiac with a food allergy. It’s an autoimmune disease – like type 1 diabetes – NOT a food allergy. Celiac is a multisystem immune disorder, taking an average of ten years to diagnose.

Only 17% of those with celiac disease are diagnosed. Dr. Leffler feels – and we agree – that this is unacceptable. But consider…in Finland, approximately 70% of celiacs are diagnosed. Better results are possible! Currently, in North America, most people on a GF diet are not celiac – and most people who are celiac are undiagnosed and eating gluten.

Gluten is a very tough protein. Cows have four stomachs to digest their food – we have but one! Gluten goes through the gut intact. If it can enter the submucosa of the intestinal lining, tissue transglutaminase, which is present everywhere in the body, can deaminate gluten (remove amino acids) hence changing the shape of gluten and activating the immune system to make antibodies.

As diagnoses of celiac disease have increased, so has the prevalence. More testing has led to more diagnosing but there has been no plateau as for other diseases. All auto-immune diseases are increasing in prevalence; celiac disease is no exception. The average age of diagnosis for celiac is around 40. But there can be an onset at any age when there is exposure to gluten.

As we know, the diversity of symptoms makes it very difficult to diagnose.

So, what about celiac disease versus non-celiac gluten sensitivity? Here are the current definitions:

Celiac disease is a chronic intestinal immune-mediated enteropathy precipitated by exposure to dietary gluten in genetically predisposed individuals.

Non-celiac gluten sensitivity (NCGS) relates to one or more of a variety of immunological, morphological or symptomatic manifestations that are precipitated by ingestion of gluten in people in whom celiac disease has been excluded.

In layman’s terms, celiac disease is an autoimmune disorder where the presence of gluten results in damage to the intestinal system. You can only develop celiac disease if you have the required genes (HLA DQ2 and DQ8).

For NCGS, this means that you need to have celiac disease excluded (through testing) to be in a position to state you have NCGS.

There have been case reports of NCGS since the 1970s. The first controlled study was published in 1980. Interest really began to spike five years ago with increased interest in celiac disease and the overflow of the gluten-free diet into the general population.

For diagnosing celiac disease, what is necessary is a duodenal biopsy compatible with celiac disease AND one or both of the following:
1) positive celiac disease-specific serology (tTG, EMA or DGP)
2) clinical or histological response to gluten-free diet

What is supportive to the diagnosis is:
1) HLA DQ2 or DQ8 (absence of which excludes CD)
2) Biopsy proven dermatitis herpetiformis
3) Family history of CD

Note: There are blood disorders that can cause a false positive on the celiac blood test. It is important to get a biopsy done.

Modern wheat strains have more alpha amylase trypsin inhibitors than in the past. While these make the wheat more pest resistant, they also stimulate our immune system.

Researchers are looking at subgroups of gluten sensitivity. Sufferers have different levels of sensitivity (pain tolerance) and immunoreactivity (see slide with happy and sad faces).

There is controversy as to whether to test irritable bowel syndrome (IBS) sufferers for celiac. The studies are split on that front.

Celiac disease and the gluten-free diet continue to be associated with other conditions. For those with IBS, the gluten-free diet may help. A low-FODMAP diet definitely helps for bloating. Diagnosing a Type I diabetic with celiac disease, it was found, will reduce diabetes related complications.

The gluten-free diet is viewed as one of the most difficult, apart from the ESRD (kidney failure) diet because of restrictions. If you’re on medication before celiac diagnosis, be sure to check with your doctor when you start to heal. You might need adjustment in the dosage/drug. You may seem to be continuing to suffer symptoms but it could in fact be over-absorption of your medication!

A gluten-free diet is not always the end of the story. 10-30% of celiac patients have persistent symptoms despite doing everything “right”. Further, not everyone’s intestine heals completely. For those who are older, there is only a 50% chance of healing completely. In children, the figure is around 80%. For adults who do heal completely, the process can take 2-3 years.

A number of therapies are being researched, including intraluminal enzymes, Nexvax, nanoparticles, and immunosuppressants to prevent immune response. Larazotide acetate studies are promising. It may also be possible to re-teach the immune system to not view gluten as invasive. There are ALV-003 (Alvine) enzymes being studied, but the timing of taking the enzymes is tricky. A BL-7010 polymer being researched would bind to gluten, making it too large to pass through the intestinal wall.

Dr. Leffler also gave a shout-out to conference silver sponsor Glutenpro, a Canadian company, which provides commercially-available genetic testing. Are you a suspected celiac who does not want to do a “gluten challenge” due to harsh symptoms? You should get the genetic test.


Diagnosis, Treatment and follow-up of Celiac Disease in Children

Dr. Jeff Critch
Pediatric Gastroenterologist, Faculty of Medicine, Memorial University, Newfoundland

Dr. Critch gave us a bit of history of celiac disease. In 250 AD, Galen described adult and pediatric celiac disease. Gee (1887) described it as a “wasting disease”. Dicke’s work (1950) found that sick children improved during World War II (when wheat was harder to come by). Paulley (1954) described the villous atrophy present in celiac disease.

Dr. Critch spoke about testing for celiac disease, especially for children. Antigliadin is not used as much anymore, as it is not a specific as tTG. There are more false negatives noted when testing those who are under 2 years old. We may not always need the biopsy in children, if they have the HLA-DQ2/DQ8 genes and elevated tTG via blood testing. European guidelines have backed this approach.

One of the most common causes of short stature in children is celiac disease. And it turns out that the timing of the introduction of gluten does not matter as much as we thought.

If the tTG positive but biopsy is negative, for those over five years of age, there is a 50% chance of developing celiac disease – so annual tTG testing is recommended. If the tTG increases or there is the appearance of other symptoms like anemia, then do a re-biopsy.

For a celiac child, it is important to monitor their growth and nutrition, assess dietary adherence, address psychosocial concerns, be aware of the financial impact of the diet, and screen family members for the disease. These are all part of the treatment – it’s not just the gluten-free diet.

Do you have a child with celiac disease, but you do not have it? Do not go all gluten-free in the household, as it may do more harm than good. Children need to learn how to manage cross-contamination.


Avoiding the Nutritional Pitfalls of the GF Diet

Dr. Anne Roland Lee
Nutritional Services Manager
Dr. Schär USA

Dr. Lee brought us some fresh perspective on the gluten-free diet, starting with some statistics. Apparently approximately 65% of the US population believes that the gluten-free diet is healthier – which we know is often not the case. Despite the explosion in gluten-free food availability, for us, 2-3 shopping trips are still often required to obtain all one wants or needs.

There are lots of gluten-free foods out there, she reminded us. Fruits, veggies, meat, fish, beans, dairy and more! With restaurant meals, celiacs often have to eat “naked” – without sauces, powders, other additives and such.

Dr. Lee reported on the results of various studies, which found:
– The gluten-free diet tends to be heavy on rice, and with poor overall nutritional quality
– People on average gained 20-25 pounds over 1-2 years after the diagnosis
– Even when the gut heals, there may still be nutritional deficiencies
– Celiacs tend to eat more sugar and fat – more refined grains and desserts
– Gluten-free diets tend to be lacking particularly in calcium, iron and magnesium

Gluten-free food continues to be less nutritious, in general, than gluten-containing foods. Gluten-free pretzels, for example, were found to have far more fat and calories than the regular kind. People who switch to the gluten-free diet tend to gain weight – it’s not that surprising! Celiac patients, overall, tend to get more calories from fats and sugars than from other foods.

How to address these problems? Dr. Lee recommends supplementation for calcium, iron and magnesium for celiac patients. Magnesium increases the absorption of calcium – and also helps to alleviate constipation. Iron supplements are recommended for both men and women. Omega-3 supplementation is also recommended. And all people with celiac disease should take a multivitamin (look for age and gender-specific varieties).

All that said, more is not necessarily better when it comes to supplements. We want you to get most of your nutrients from food.

And watch out for oats because of their high fibre content. There are gluten-free oats available, but a lot of people try them and erroneously think they are part of the 3-4% of celiacs who cannot tolerate oats. More likely you just re-introduced them too quickly. If you go from no fibre to tons of fibre, you’ll feel like you’ve been glutened, Dr. Lee said. Do things slowly!

Given that there are ongoing arsenic concerns with rice, alternative grains should be included in the diet. For example, millet, buckwheat, sorghum, and quinoa. Any grains can be cooked in a rice cooker. Remember, arsenic is water soluble. So rinse rice/rice pasta before cooking or cook it in more water than needed and drain the excess.

However, Dr. Lee flagged one study that found that 30% of tested grains were contaminated with gluten. For that reason, it is highly recommended to go with grains bearing gluten-free labeling.

Celiac Disease and Osteoporosis: What You Need to Know
Dr Don Duerksen
Associate Professor of Medicine, University of Manitoba

Dr. Duerksen, who was not able to attend in person, presented virtually using a recorded PowerPoint presentation with audio.

He explained that those with celiac disease and an elevated tTG have an higher incidence of decreased bone density at all sites that were evaluated in his review (hip, wrist, vertebra) and an increase risk of major fracture (1.37 increase in risk).

Why does this happen? Three main reasons for the increased risk are a calcium malabsorption, general malnutrition and a decreased BMI, and chronic inflammation.

The good news: When someone is diagnosed with celiac disease and gets onto the strict, gluten-free diet, bone density was shown to increase by 5-6% over 1-2 years on the diet. All celiac patients should have a bone density scan at diagnosis or one year following diagnosis, to catch any problems early on.

To help treat low bone density, celiacs should look at supplementation of calcium, vitamin D, bisphosphonate – and of course be very strict about the gluten-free diet.


Celiac Disease in Family Medicine

Dr Jenni Zelin
Family doctor, Charlottetown, PEI

Dr. Zelin brought us celiac disease from the perspective of a family physician, with some interesting pieces of advice.

When a family physician sees a patient who has what seems to be classical celiac disease symptoms, it could also be a wheat allergy, IBS, a FODMAP intolerance, lactose intolerance, or stress-related physical ailments. It is important to understand that the doctor wants to find out exactly what it is the problem – so don’t walk in telling the doctor it’s celiac and refuse to listen to any other possibilities!

Who should be screened for celiac disease? She recommends the testing for those with IBS (or what appears to be IBS), Down’s Syndrome, Type 1 diabetes, hyper- or hypo-thyroidism, schizophrenia, or any other autoimmune disease or condition. As well, celiac should be suspected if the following symptoms are present and unexplained: infertility, anemia, fatigue, low bone density, anxiety, depression, and easy bruising. Microscopic colitis is also highly linked to celiac disease. For ulcerative colitis, however, there is much less of a link.

She strongly recommends bringing the new document Follow-up Management of Patients with Celiac Disease to your family doctor. It is a two-page document – a fast read – and can be downloaded easily from the CCA website (

How to Travel the World while Eating Safely Gluten-Free
Erin Smith, The Gluten-Free Globetrotter, [email protected]

Erin Smith was diagnosed with celiac disease at the age of two, in 1981. So she knows how to live gluten free!

She has a passion for travelling, and shared innumerable tips and tricks with us, including gluten-free hotel and restaurant accommodations where she has visited around the world.

Some gluten-free travel resources include:
– (have travel cards in many languages for you to bring to restaurants)
– (have travel cards as well, but at a cost)
– Bob and Ruth Travel Club
– Jovial Food Culinary Getaways (Italy) Villa
– Bien Cuit GF at Savoir Faire Chalet (France)
– OpenTable will make your reservations with allergy considerations
– Finding GF App
– Yelp
– TripAdvisor (good for finding where to eat and where not to)

Erin gave a shout-out to Arenas del Mar in Costa Rica, which reportedly is very celiac friendly and makes for a great winter getaway.

She also provided several tips such as keeping handy snacks like roasted chickpeas, travelling with ziplock bags, and using hotel room coffee pots for boiling water to make hot cereal.


Latest Research in the Mechanisms Leading to Celiac Disease

Dr Elena Verdù
Associate Professor, Division of Gastroenterology, Dpt of Medicine, McMaster University

Dr. Verdù opened by expressing her gratitude to the CCA’s J.A. Campbell Research Fund, which is the only Canadian research fund for celiac disease. She encouraged everyone to support it and keep it going. It could be boosted through professional fundraisers for the organization, similar to what Crohn’s and Colitis Canada does.

Turning to the research, she informed the audience that celiac disease is 4 to 4.5 times more prevalent now than 50 years ago. The exact cause of this is unknown, but there are many hypotheses: intestinal microbiome changes, more c-sections, medications, antibiotics, changing dietary habits, and more/different infections.

Gluten is everywhere and we consume a lot (20 to 40 grams per day) – and partially digested fragments trigger inflammation. Studies find that 30% of patients continue to have symptoms on GF diet, most commonly due to cross-contamination. Processed foods are a frequent culprit. Dr. Verdù warns us that, no matter how well you do on the gluten-free diet, you’re at risk of cross-contamination because of the sheer amount around. As little as fifty mg a day of gluten was found by Dr. Carlo Catassi to cause damage in patients with celiac disease.

What we can be thankful for is that more is known about the mechanisms of celiac disease than any other autoimmune or chronic gastrointestinal disorder (including IBS/IBD).

In terms of potential treatments, Dr. Verdù warned that the aim of these is to use them in addition to – not in replacement of – the gluten-free diet. Once finalized, all treatments could possibly be given together at the time of a celiac diagnosis because damage can take five years to resolve on the diet. Treatments could prevent adverse consequences of accidental contamination and reduce the anxiety of potential contamination.

To give a run-down of many of the potential treatments:
– Polymer treatment to sequestrate gliadin, Bioline Rx has gone through phase 1 of studies with mice (CCA funding helped to support this Canadian research!)
– Oral proteases (enzymes) studies not successful so far due to problems keeping enzymes active in the intestine, but there remains potential – more research is required
– Optimizing microbiota with probiotics to produce enzymes to breakdown gluten or a combination of pseudomona and lactobacillus together
– Larazotide acetate to decrease tight junction leakability (decrease space between the cells) – this is going into phase 3 clinical trial so should be available soon, if efficacy is shown in this last trial
– Anti-IL-15 cytokine (key player of innate immune response)
– AMG714 – also drives risk of lymphoma.
– Vaccine Nexvax2 in phase 1 trials, involves re-educating the immune system, similar to peanut allergy research and treatments

We have no idea what causes IBS, and know pretty much nothing about IBD. But those diseases have medications, so why not celiac, Dr. Verdù asked. If we end up with a drug on the market, doctors will pay more attention. There is currently no Big Pharma support behind this disease.

Dr. Verdù noted that, in the case of iron deficiencies, iron receptors up-regulate to increase iron absorption but also bring in gluten molecules in the process – transcellularly through epithelial cells – so resolving iron deficiency can also decrease celiac symptoms. A gastrointestinal imbalance is likely the problem.

In terms of diet, she highly recommends fermented foods – good for many reasons. She warned the audience about products such as “Gluten Cutter”, purported to digest gluten. These are simply amylase, which breaks down starch and not protein such as gluten. These products are “ridiculous”, she said.

As we know, you have to be careful even with naturally gluten-free grains. They are frequently contaminated, with the most contaminated being millet, buckwheat, sorghum, and soy. Stick to brands with gluten-free markings. Dr. Verdù mentioned the case of a patient saying they were “allergic to soy” following a reaction to soy flour. But the soy flour was likely gluten contaminated!

Dr. Verdù encouraged the crowd to get involved in their local CCA Chapter. She emphasized the need to increase outreach and education, and support for research.


Camp Silly-Yak

David Graham
Executive Director of Brigadoon Village, Camping Canada

David Graham spoke to the conference about Camp Silly-Yak, an exciting gluten-free camping experience for children in the Maritimes.

The main purposes of Camp Silly-Yak are to show children they are not alone, to give them things they can’t get anywhere else (pasta, pizza, cake, cookies, etc.) and to show them how to cook things themselves.

The suggested fee for the camp is $1,000 a week, or parents are asked to contribute what they can. But how to put a price on a week of worry-free gluten-free eating for your celiac child? And among new friends who understand the problems they face?

To learn more, please visit


Your Right to Safe Food: Major CCA Projects on the Horizon

Sue Newell
Operations Manager, Canadian Celiac Association

Sue Newell, the CCA’s operations manager and Facebook group moderator, who is very well-known throughout the organization, brought us news on the latest CCA projects.

The Gluten Free Certification Program (GFCP) continues to expand. It is run by the Allergen Control Group (a third party organization) and the program certifies food production facilities – not products. It is a comprehensive food safety management system.

Once a company has achieved the required status and standards, they can use the Gluten-Free Certification Logo (which mentions the Canadian Celiac Association) on their products. A royalty from the program goes to the CCA. Facilities are audited on an annual basis.

There are over 200 trained auditors from 12 certifying bodies that are making sure your gluten-free food is safe. Audits have been completed in sixteen countries on six continents! And the GFCP food safety standard itself has been audited to make sure it adheres to global food safety standards. The program is becoming an international model for a gluten-free food safety standard. A huge accomplishment for the CCA.

The GFCP is about “clean in, clean out”. Pure supplies, proper food safety handling, and gluten-free product going out for sale.

Lay’s potato chips were the first to be certified, and now PepsiCo (owner of Lay’s) has around 50 products certified.

The GFCP now features more than 150 brands produced at 200 certified facilities, some of which produce food for many different companies. Examples include Loblaws, Sobeys, PatsyPie, and many others ( In total, over 4,000 products now bear the GFCP trademark! We’ve made incredible progress since 2012.

Next, the CCA is working on a program to ensure safe, gluten-free grains (as we know, cross-contamination of “gluten-free” grains, lentils, etc. is a constant problem). The CCA will look at putting procedures in place to assess reduction in contamination throughout the grain handling process. This program is just getting started and a stakeholder session will take place this September in Toronto.

The Government of Canada has committed over $500,000 to support this project – and that funding was announced at the conference. We are working with Pulse Canada, Prairie Oat Growers, the Canadian Grains Commission, and others to help make this idea a reality. Grains are often allowed to have 2,000 – 5,000 parts per million gluten. We need 20 ppm for safe, gluten-free food, so a new system is required. And testing for gluten is very different in cooked versus uncooked products, solid versus liquid, wheat versus barley.

The new sampling and test protocols will be setting a world standard. This information just does not exist now.

Next, haven’t we all been stressed out at one time or another about finding safe, gluten-free food at a restaurant? The CCA is launching a program to help. The Allergen Control Group is working with CCA and Fondation québécoise de la maladie coéliaque (FQMC) to create the Gluten-Free Food Program.

It is scheduled for a “soft roll-out” with certain pilot locations as of July 1.

The program has 2 components:
– GF Smart (food service training for individuals – a two-hour online course)
– GF Verified (for restaurant establishments) – including documented process and annual third party verifications

The CCA will be receiving royalties for every English course completed – and the FQMC will receive royalties for the French side. The course is accredited for Nutrition Management Society members. One university has already expressed interest in establishing the system in eight locations. Ontario seniors’ homes are also a big potential market – 90% of their foodservice operations are controlled by one single company.

Registering for this program will demonstrate a restaurant’s commitment to specific protocols and verifications. Being gluten-free is about managing risk. Restaurants are higher risk than cooking at home, but this program can help to narrow that gap.

The specific requirements of the program will vary by restaurant, depending on its type. The current course is an overview. We may look at adding specific modules for seniors’ homes, caterers, etc. for a more targeted experience.

Once the program gets underway, a GF Verified List of restaurants will be provided via the CCA website. What a convenient list that will be when travelling within Canada!

What will be critical for CCA members is to be ambassadors for this program. We all want to be able to dine in safety. Advertise the program! Ask your favourite local restaurant to register. Bring them the information they need. And support restaurants that have made the investment in this program by eating there.

The CCA will be working on awareness as well. We are hoping to get the program into the industry via trade associations and other key contacts. Work is already underway.

This program is just the latest initiative of the CCA and helps us get closer to its mission, which includes improving the quality of life for all Canadians with a “gluten problem”.

Anything but Rocks: Successful Gluten-Free Baking

Stacey Andrews
Registered Dietitian, Sobeys

This talk was a good orientation session for any newly-diagnosed celiac and a sound refresher for the rest of us. Despite years of gluten-free living, too many among us still struggle with baking an edible gluten-free food!

Are you changing a recipe? Try doing it one ingredient at a time, so you can keep track of what worked and what did not. Changing too many things at once will make it tough to isolate which change or substitution was the wrong one. Over the long term, changes to the recipe might improve the texture and the nutritional quality of your baked goods.

To ensure success, make sure you measure properly – use level amounts, not heaping. Mix dry ingredients very well. Add liquid ingredients like milk, water, eggs and oil at room temperature, or slightly warmed – not cold. Do not overmix when combining wet and dry ingredients. To get better results, chill your dough/batter for about 30 minutes before baking. And ensure your pan is in the middle of the oven to promote even baking.

Having problems with moisture? Try reducing the temperature of the oven. You can also add a pan of water to the oven, while things are baking, to avoid dryness. After the stove is turned off, if you’re not serving your creation right away, wrap the product well while it is still warm and store it in the freezer – this will help preserve the moisture.

Try mixing three or more flours to get the best results. Be mindful of the different categories of flours:
– Whole grain flour (crumbly texture)
– Bean flour (strong flavour)
– Nut flour (requires more liquid or fat)
– Starch flour (helps with cohesion)

Consider non-traditional baking ingredients that can pack a nutritional punch – such as dates, beans, legumes, ground flax and chia. Ask a friend from the CCA for suggestions!

And don’t forget binders like xanthan or guar gum. Don’t overdo it on binders though – for example, adding date paste, binder substitutes and eggs to the same recipe will make it heavy and it might not cook well.

If you’re a gluten-free newbie, try baking with a mix before experimenting on your own. These can help you learn what to expect with a successful home-baked goodie. Commercially available blends are great because they can often be substituted 1 for 1 and might work well in pre-existing recipes you have.

Refrigerate or freeze your ingredients to keep them fresh for as long as possible. This is particularly important for nut and whole grain flours. Store spices and oils in a cool, dark place.

Be sure to keep your membership in the CCA up to date to receive the latest newsletters packed with exciting baking tips!

About Sue Newell

Operations Manager at Canadian Celiac Association Canadian Celiac Association Waterloo, Ontario, Canada