It's the 'What Did I Miss' Conference Issue

On Sunday, November 15, the Canadian Celiac Association hosted its second virtual conference this year. Thanks to our generous partners and donors, we have been able to bring relevant, world-class education on celiac disease to Canadian desktops and mobile devices. The event attracted nearly 1,500 registrants and the team fielded nearly 500 questions during the six-hour program and we shared some very funny 'memes' from our emcee Mark Johnson.

You didn't have time to join us or you want a recap on some key points? We've condensed some of the highlights for you, top tweets, questions and answers and provided a spotlight on research.

THIS ISSUE HAS BEEN GENEROUSLY SPONSORED BY

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Sound bites in 280 Characters or less...

Leffler: The GFD (gluten-free diet) is the only available treatment regardless of patient disease status. We think this turns people away because it’s not very satisfying and the response to diet is often incomplete.

Leffler: Research shows that the burden of GFD was the second highest burden, with only patients on end-stage dialysis with kidney disease, being higher.

Leffler: New technology that's recently come out: Gluten Immunogenic Peptides - gluten is not well digested so you can test stool and urine to shine a light on accidental gluten exposure.

Mudryj: Gluten free is the fastest growing food intolerance category in Canada. Almost 10 million or 1/3 of Canadians are looking for gluten free.

Mudryj: Research that shows gluten-free products in Canada are on average 242% more expensive than regular products. Budget is a huge barrier to following the GFD, as well as cross contamination, limited availability, the social burden, and more.

Mudryj: The highest number of Canadians avoiding gluten were located in Atlantic Canada and BC.

Thompson: We now need purity standards and protocols for lentils, similar to those in place for gluten-free oats.

Thompson: Remember PPM isn’t the whole story - we need to consider how MUCH of a product is eaten to get an idea of our gluten exposure.

Thompson: PPM or Parts Per Million, is a ratio. For example, if you’re eating pasta that has 20ppm of gluten, you will need to eat the whole bag to ingest 0.5 grams of gluten. So a gluten-free cereal testing at 40ppm is much more dangerous than a spice with 40ppm.

Shelley: You can have a GF claim AND a May Contain Wheat claim...this is to alert people with wheat allergies.

Shelley: Gluten-free oats require purity of the seed, safe crop rotation, dedicated or thoroughly cleaned equipment, along with extensive gluten testing. It just takes 2-3 kernels of barley or wheat to contaminate a batch of oats.

Dr. Duerksen: Celiac disease can lead to higher risk of osteoporosis because of 1) poor absorption of calcium and Vitamin D and 2) higher inflammation. The good news is Bone Mineral Density usually increases after following a gluten-free diet.

Dr. Duerksen: to help reduce osteoporosis risk in celiac disease, it's wise to get up to 1200mg of calcium daily (diet and supplement), and 800-2000IU of Vitamin D for people over 50. Regular weight-bearing exercise is also critical for bone health.

Donnelly: The scoop on following a GFD: gluten-free foods can be 2-3 times more expensive, and a person with celiac disease spends around 10-20 extra hours per month scrutinizing food labels when shopping!

Donnelly: Important questions to ask if you do end up calling a company over a "May Contains" statement:

-How do you clean your equipment?

-Do you batch test for gluten?

-How are your raw materials sourced and produced?

-How do you avoid cross contamination in the factory?

Donnelly: It's always great to have a reminder of ways to avoid cross-contamination at home! Best practices for avoiding gluten cross contact:

-Wash all surfaces, kitchen tools and utensils with soap and water

-Don’t double dip or mix serving utensils

-Prepare gluten free foods in separate pots/pans

-Avoid bulk bins and salad bars unless designated GF. Look for GF labels when shopping.

Dr. Maria Ines Pinto-Sanchez: Gluten Immunogenic Peptides (GIP) tool helps support the dietitian assessment, GFD compliance, and helps monitor accidental gluten intake. It is a game-changer in monitoring GFD.

Dr. Maria Ines Pinto-Sanchez: Inflammatory bowel disease (IBD) and CeD are associated! Canada has one of the highest prevalence of IBD in the world.

Dr. Maria Ines Pinto-Sanchez: The Celiac Disease Clinic at McMaster is a model that we hope can be replicated.

EXCITING TIMES WITH RESEARCH PIPELINES BUSY WITH POTENTIAL TREATMENTS

Dr. Dan Leffler, Head of Takeda Research, kicked off the conference with an overview of celiac disease and where research is headed

Highlighted the foundations of improving quality of care in celiac disease, to find answers to following questions:
What predicts remission?
What are rates and predictors of quality metrics?
How many people are having vaccinations?
Seeing a dietitian?
Getting a bone density test?

There is a silent majority lying between the health-conscious well and complicated and unwell within the celiac disease clinical spectrum. It cannot be assumed that silent majority are doing well only because they are not seeking medical care, as evidence exists that lack of medical follow up in people with CD is associated with increased risk of mortality.

Gluten-free diet (GFD) is the only accepted treatment of celiac disease and patient satisfaction with the GFD is low while the burden of GFD is high. Prescribing the same intervention (GFD) to all the patients regardless of the disease status, makes the treatment non-individualized. Ongoing symptoms are mainly caused by gluten exposure. Even people on strict GFD get exposed to gluten.

It was found that even people on strict GFD exposed to gluten and the risk for exposure increases with age. The rates of accidental gluten exposure were found to be 10-15% in young kids, 30% in older kids and 30-60% in adults. Interestingly, when the rates of persistent villous atrophy were checked, the results mirrored the rates of accidental gluten exposure, with much higher rates of histological gut recovery among young children compared to adults. Tests are now available shining a light on accidental gluten-free exposure even in very small amounts (ELISA etc.) New Gluten Immunogenic Peptides (GIP) tests are now available to detect accidental exposure to gluten in people with CD.

Today many companies are working on pharmaceutical solutions that target every element in pathophysiology of CD (of which we currently have a good understanding), so the new effective non-diet therapy will likely arrive from this direction and the GFD may be one of a number of options allowing for more individualized approaches.

For advancements to happen, it is important for people to participate in research so the next breakthrough can take place. Participants in studies are carefully monitored and will not increase their risk for long-term complications. Individuals who are not recommended for clinical trials are pregnant women or severe celiacs with neurological conditions, such as gluten ataxia.

"Celiac disease is present in every population. Gluten exposure is ongoing despite our best efforts. Current treatment and monitoring strategies are lacking and thus novel therapeutics will significantly improve all aspects of medical care in CD."

CCA fielded nearly 500 questions during the virtual conference.

Here are some of the answers to the most popular questions.

Dr. Dan Leffler

1. People have varying reactions to digesting gluten, the reaction can be severe in some and mild with others. Is the damage to the intestine the same, not matter what the reaction is?

This is correct, just like the severity of symptoms in response to gluten exposure can be very different in different people, the amount of intestinal damage caused by short term gluten is different also. Most people will not have any measurable damage even with a day or two in a row of big amounts of gluten but by 1-2 weeks, some people begin to have significant intestinal damage while for others the intestine will not show these changes unless gluten exposure continues for many more weeks.

2. Can blood work be diagnostic now or is gold standard still biopsy?

The blood tests are quite good but the gold standard currently is still biopsy. While in general having a confirmatory biopsy is a good idea, in two cases it is particularly important. First, some people can have celiac disease even with negative blood tests, in these cases, celiac disease would be missed altogether by relying on the blood test only. Secondly, people with only moderately elevated blood test levels or with atypical signs/symptoms could be falsely diagnosed by using only the blood test results.

3. Is it possible to have triggers to DH in addition to gluten, could it be triggered by emotion?

This is not known to occur, however there are other rashes that may looks and feel similar to DH that can be triggered by stress.

4. What are the main impacts to our microbiome that may then increase risk of for CD?

This is still unknown, however it is likely that early childhood exposures such as being born by C-section, GI infections, lack of breastfeeding, and antibiotic exposure all play a role.

5. Are people CD more prone to get gastrointestinal and autoimmune diseases?

Yes. Once you have one autoimmune disease, including celiac disease, you are at higher risk to have a second condition. In addition, certain non-autoimmune gastrointestinal conditions including microscopic colitis, inflammatory bowel disease, and likely irritable bowel syndrome among others.

Dr. Don Duerksen

1. At what age should bone density testing be done, is it based on age or time of diagnosis?

If patients have malabsorptive symptoms or risk factors for osteoporosis (other than celiac disease), we would do BMD at the time of diagnosis. If they don’t have risk factors or signs/symptoms of malabsorption, we would do the Bone Mass Density approximately one year after diagnosis

2. How often should bone density testing be redone for those who follow a strict GFD?

It would depend on the baseline BMD and other risk factors for osteoporosis. If there are no other risk factors and the baseline test was normal, they may not need another one.

3. In addition to vitamin D and calcium supplementation, is there any other needed supplementation?

From the point of view of bone health – these are the most important supplements to consider.

Vitamin D metabolism requires magnesium – most individuals are not magnesium deficient

4. What is the reason that celiac patients have a lower intake of calcium and vitamin D?

It likely relates to them avoiding milk and dairy products which have high amounts of calcium (and significant vitamin D). If the reason for lactose intolerance is villous destruction of villi causing lactase deficiency, then adherence to a GFD should result in recovery and an ability to digest lactose. If it is because of congenital deficiency, then they will continue to have symptoms of lactose intolerance.

5. Is there an association between non-celiac gluten sensitivity and osteoporosis?

At this point we don’t think there is an association between non-celiac gluten sensitivity and osteoporosis. There are still things we are learning about with respect to NCGS.

Many studies showed that 40-60% people with CD have low bone density at diagnosis and 12-21% have osteoporosis.

"1.9% of Canadian self-reported avoidance of gluten with females being 2x more likely to avoid gluten as well as Canadians within the age range of 18 to 49, with the highest prevalence in Atlantic Canada and BC."

- Adriana Mudryj, James A Campbell Memorial Research Presentation

Dr. Maria Ines Pinto Sanchez

1. There is no increased risk of contracting COVID by having celiac disease, but would there be a higher risk of developing severe symptoms of COVID?

The survey was developed to assess whether there was an increased risk of contracting COVID-19 in people with celiac disease compared to the non celiac population. There was no evident difference in COVID symptoms between celiac and non-celiac. However, how this impact in celiac outcomes, and whether people with celiac disease are at higher risk of getting complications related to COVID-19 exposure, was not investigated in the survey. This will be addressed once the results from the SECURE-CELIAC registry https://covidceliac.org/ comes out.

2. How can you get enrolled or referred to the Celiac clinic at McMaster?

The referral process requires the family doctor to complete the referral form (Click Here) and fax it to our celiac clinic, in case they consider necessary. Referrals are triaged, meaning that appointments will be booked according to availability and priority.

3. When being diagnosed with CD, is the blood test just as accurate as a biopsy?

The blood test for celiac is highly sensitive and specific, but not perfect. The chances that the test can miss a patient that has celiac disease (false negative) or diagnose with celiac disease to someone that is not (false positive) is approximate 10% of the cases. Because of this, the diagnosis of celiac disease in adults requires confirmation by biopsy. In children there are specific criteria that may lead to a more accurate diagnosis for celiac without the need of biopsies, but this involves a more rigorous process that is not yet established for adults.

4. Does the GIP test provide any indication of amount of gluten one may be ingesting daily?

The GIP test that is done at home does not specify the quantity of gluten ingested, but if positive, we know there is a significant amount for people with celiac disease as it is above the cut off of tolerance.

Tips from the Gluten-Free Watch Dog

Tricia Thompson, RD

Watch for facial misbranding. Facial misbranding is a product labelled gluten free but contains an ingredient that should not be present in a GF product. The prohibited ingredients that are frequently involved are: barley malt, barley malt extract/syrup, barley malt vinegar, wheat-based soy sauce.

Choose naturally gluten-free grains

Choose flour products that are labeled gluten free from trusted gluten-free sources, as risk of cross-contamination in this group is high.

For oats, only use those labelled gluten-free, as standard oats are likely to be contaminated with errant gluten-containing grain. Look for purity protocol gf oats.

Shelley Case, RD

Shelley explained how the “may contain statements” which are voluntary are not reliable predictors of gluten contamination and highlighted important questions for consumers to the manufacturer such as: 'do you batch test for gluten?'

Click to download CCA's Labelling Reading Guide

You can still watch the conference on CCA's YouTube channel along with a host of past pre-recorded webinars. Watch it from start to finish or scan through the content. We've given you some content markers below.

Research - Dr. Dan Leffler - 23:00 min mark
Avoiding gluten and dietary impact - Adriana Mudryj - 1 hr:30 min mark
Hidden Gluten in Foods - Tricia Thompson, RD - 2 hr: 15 min mark
Label reading in Canada - Shelley Case, RD - 3 hr: 24 min mark
Bone Health and CD - Dr. Don Duerksen - 4 hr: 30 min mark
What makes gluten free food, gluten free? Meghan Donnelly, RD - 5 hr: 06 min mark
McMaster Celiac Clinic and management of CD - Dr. Maria Pinto Sanchez - 5 hr: 45 min mark

CCA's Expand Your Horizons Virtual Conference

GF 101: GETTING STARTED ON THE GLUTEN-FREE DIET

When: December 15, 2020 Time: 7 PM Eastern