Fake Celiac News?

by Sue Newell, Manager, Education and Special Projects

The internet is full of information about celiac disease, gluten sensitivity and the gluten-free diet. Not all the information is valid, useful or accurate. Separating internet myths from fact is a key piece of being comfortable with eating gluten-free. The quantity of information available is staggering and it comes in so many forms – from blog entries to dense scientific articles. On top of sorting through the huge quantity of information, you must deal with a very uneven level of quality. Some of it is sheer speculation without a shred of proof; some is the result of years of painstaking study and research. Some of it comes from people who want you to buy something (or not buy something) and some of it is offered with the best of intentions.

I don’t think a lot of people specifically try to create fear maliciously, but sometimes they repeat information they have heard from other people who have either misunderstood something or who have drawn conclusions that are unwarranted
based on fact.

Figuring out whether a source is reliable is not an easy thing – it takes detective work. You must figure out where to look and what clues to look for. You may run into way too much information or not enough at all. The easy way is to just accept whatever you find, but this may not be the best solution.

Here are a few tips for figuring out if the information is accurate:

  1. Was this information published in the last few years? The labelling rules changed five years ago in Canada. Anything older than that is suspect.
  2. Is it talking about products sold in Canada? If not, it doesn’t apply.
  3. For disease information, does the information reference published journal articles? Ideally, you are looking for the journal reference or at least the names of the investigators.
  4. Is this a blog site or a site sponsored by a credible institution? Blog posts are opinions unless the facts are supported by references.

Finally, trust your own knowledge. If something sounds too good to be true, it quite possibly is. This is especially true if the information contradicts things you have earned from reliable sources. If you have doubts, don’t eat something. The worst that will happen is you miss out on something that is safe. That is a lot better than saying the price of eating something that is not safe.

Childhood Respiratory Infections Linked With Celiac Disease

Findings published recently in the journal Pediatrics reported that the number of at-risk children – or those with relatives who have celiac disease – who go on to develop celiac disease seems to be increasing. And recently, Dr. Renata Auricchio, from the University of Naples Federico II in Italy, set out to understand why this might be the case.

Studies have pointed toward infections in childhood as a potential trigger of celiac disease in those who are genetically susceptible. For instance, a 2013 study found that the presence of rotavirus antibodies could predict the onset of celiac disease.

Similarly, in the Norwegian Mother and Child Cohort Study, children who had experienced 10 or more infections before reaching the age of 18 months had a significantly increased risk of developing celiac disease than children who had had four or fewer.

Many earlier investigations into infections and celiac disease relied on parental recall of infections and have included a general cross-section of the population. However, to gather more detailed information, the new study used a prospective cohort. In other words, the team studied a group of infants known to be at risk of developing celiac disease and followed them for 6 years.

As the authors explain, the study’s aim was “to explore the relationship between early clinical events (including infections) and the development of CD [celiac disease] in a prospective cohort of genetically predisposed infants.

Across the study, 6 percent of the children were diagnosed with celiac disease at the age of 3, 13.5 percent at age 5, and 14 percent by age 6. They also found that “[c]ompared with gastroenteritis, respiratory infections during the first 2 years of life conferred a twofold increase in the risk of developing CD [celiac disease].”

When discussing how early infections might impact the later development of celiac disease, the authors write:
“It is possible that […] early infection stimulates a genetically predisposed immune profile, which contributes to the switch from tolerance to intolerance to gluten.”

More info: https://www.medicalnewstoday.com/articles/319702.php

Treated Malt Beer Still Not Safe For Celiacs

beer-not-gluten-freeMisinformation by bartenders and beer sellers is still prevalent, so routinely we feel it necessary to issue the following reminder.

NO beer made with malt is considered safe for people with celiac disease.  Not mainstream beers, and not enzyme treated beers. Examples include Estrella, Celia and Omission.

Current technology can not accurately measure the amount of gluten in beer. It doesn’t matter that the company says their beer tests at 3 ppm or 10 ppm, or whatever. We feel that those numbers are not reliable. Other people drinking the beer without apparent symptoms doesn’t make it safe.

Recognize that this restriction is just a bad part of having celiac disease and find your new drink.

Celiac Research Update February 2018

by Mark Johnson, CCA National

Would you eat bread with wheat flour, if it was safe? Scientists in the UK are experimenting with genetically modified wheat that does not include the gluten that would trigger a reaction in a celiac. It’s still very early in the game, and much gene work remains to be done, but wouldn’t that be exciting? Some trials with the new wheat are taking place in Mexico and Spain. It’ll be interesting to see the results? For more information about the GM wheat, please visit: https://www.newscientist.com/article/2148596-genetically-modified-wheat-used-to-make-coeliac-friendly-bread/

Researchers at the University of Toronto studied the blood work of nearly 3,000 people and found that celiac cases were undiagnosed approximately 90% of the time. Ahmed El-Sohemy, a professor of nutritional science at the University of Toronto, wanted to see whether celiac disease results in subpar nutrition because of poorer absorption of vitamins and minerals. To find out, he needed data on the frequency of undiagnosed celiac disease. The findings reinforced that celiac disease occurs in around 1% of the population, but the vast majority who have it do not know they have it. To read more, please visit: http://www.cbc.ca/news/health/celiac-disease-1.4343691

A lot of celiacs feel that cannot tolerate oats. But the science shows only about 4% of us actually have problems with oats. You may feel “glutened” after eating oats but remember that oats are very high in fibre and can cause gastrointestinal issues if you have too much too quickly. Ease back into oats slowly, to allow your system to adapt. And of course stick to safe, clean, uncontaminated oats like those from Only Oats and Cream Hill Estates. Oats are a healthy and delicious option for us – enjoy!

Researchers at the University of Surrey in the UK are looking to gain an understanding of how people who have one sibling with an autoimmune disease feel about and manage their own health. This is an area of psychology which has not been studied very much before. If you know someone who would like to participate, please direct them to https://surreyfahs.eu.qualtrics.com/jfe/form/SV_8dI0Vbrvoo1iENn.

According to a study conducted by the University of Chicago and the University of Pittsburgh School of Medicine, infection with reovirus, a common but harmless virus, may trigger the immune system response to gluten that leads to celiac disease. The study was published in the journal Science and it suggests that certain viruses play a role in the development of autoimmune disorders such as celiac disease and type 1 diabetes. This raises a possibility that a vaccine could be developed in future to treat celiac disease! For more information, please visit: https://www.ndtv.com/food/scientists-discover-another-reason-for-celiac-disease-besides-genetics-1787157

Harvard Medical School and Massachusetts General Hospital are currently recruiting 500 infants (250 in the US and 250 elsewhere) to participate in their new study that plans to look at the various factors that affect celiac disease’s development. A skilled group of doctors and scientists will conduct a study called Celiac Disease Genomic Environmental Microbiome and Metabolic (CDGEMM), in order to understand and identify the various factors that are associated with the development of celiac disease. The study is led by Dr. Alessio Fasano and they’ll be hoping to find a pattern, which would lead the team to create a treatment and predict the disease’s development. For more information, please visit http://www.cdgemm.org

Research published recently showed that concludes that oral symptoms can precede gastrointestinal symptoms in celiac disease, and be useful in diagnosis. In addition to celiac, oral problems can show up in the presence of Crohn’s disease, ulcerative colitis, and gastroesophageal reflux disease. These symptoms may be key to identifying celiac earlier on, to reduce the current average delay of 11 years between the onset of symptoms and a firm diagnosis. To read more about this research, please visit https://www.ncbi.nlm.nih.gov/pubmed/29167716

Non-Celiac Gluten Sensitivity

wheat grain on stalk

wheat grain on stalkFor those of you with gluten sensitivity, please do not feel abandoned by the celiac research community. We can understand it is frustrating when friends and family may think you are lying and when popular media continually leaves you out of the “must eat gluten-free” group.

There are a lot of top name researchers who are making real progress in identifying what is triggering these reactions. The scientific community has made significant strides and is continuing to study why this is happening and what the indicators might be.

Today there is some pretty good evidence that some people may be dealing with FODMAP issues and others may be reacting to another component of wheat (amylase/trypsin inhibitors). This was in the theoretical discussion stage two years ago at the International Coeliac Disease Symposium in Prague. There is even some progress on bio-markers to allow a positive diagnosis rather than a “rule out” diagnosis.

The CCA changed its mission to focus on “anyone adversely affected by gluten” despite the concern expressed by long-term members who were afraid we were going to forget about people with celiac disease. We recognize that we all face the same challenges eating safely.

To read more about non-celiac gluten sensitivity, please visit https://www.celiac.ca/gluten-related-disorders/non-celiac-gluten-sensitivity/.

Free Online Celiac Education Program Now Available

celiac study

“Is your new year’s resolution to learn more about how to manage celiac disease? Are you newly diagnosed or struggling? A University of Calgary researcher and diagnosed celiac is offering a FREE evidence-based online program for adults with celiac disease.

North American adults diagnosed with celiac disease (blood test and/or biopsy) are eligible to participate. POWER-C contains 4 modules to be completed bi-weekly over the course of 8 weeks.

For more information or to sign up – please email at [email protected] and indicate you want to participate in the “POWER-C Study”.

Click to read more in this info PDF.

More On Our Cheerios Position

By CCA National

gluten-free-cheeriosThe CCA recently celebrated that the “gluten-free” Cheerios would no longer be labelled as such. This voluntary decision followed complaints from the CCA to the Canadian Food Inspection Agency. To be clear, the problem we had was that we could not determine if their testing protocol was adequate to confirm whether the cereal is safe for people with celiac disease. The concern is with both testing protocols and sampling protocols (choosing the oats to test).

Testing works great when a contaminant is spread evenly through the product. When you make a cup of tea, the tea is infused to the same concentration through the whole teapot. You can take a sample from anywhere and get a reliable measure of the concentration of tea. This also works with a batter where all the ingredients are thoroughly mixed.

Wheat and barley are not homogeneously (evenly) spread throughout the oats, though. The contamination is heterogeneous (spotty).

Suppose I have two cups of sugar and I add 10 grains of salt into one spot in the bowl. I ask you to decide if there is any salt in the sugar. That might seem like an extreme example, but it is not that far off the situation with cleaned oats.

If you just randomly pick a spot to sample, you might or might not find the salt depending on where you happen to take your sample from. You might hit the hot spot, you might miss. If you take more samples, you are more likely to find the salt. If you take bigger samples, you are more likely to find the salt. You can’t test the whole bowl, though, because the test destroys the sample.

The concern with General Mills is that they have not shared their sampling strategy or the results so it is almost impossible to figure out how big risk is.

Another concern is that there are conditions a company can put on farmers to reduce the amount of contamination in their oats e.g. don’t grow oats the year after wheat. We don’t know what General Mills is doing on this account.

Finally, since cleaned oats started to be used, there have been some significant concerns raised about testing. Some test protocols have increased the recommended sample size to get better results. The AOAC, the scientific organization that approves tests, has created a working group on testing cleaned oats to review the entire protocol that is currently working on the issue.

The CCA is two years through a set of projects funded by Agriculture and Agri-Food Canada with the goal of determining the amount of contamination in a variety of crops, including oats. The goal is to determine how large the problem is and where most contamination happens (seed planting, in the field, during harvest, during milling etc.)

This work is just one example of how the CCA is working to make sure you have the right to safe food. And we’ll keep working hard for all Canadians with celiac disease or gluten sensitivity!

CCA National Conference 2018 – Registration Open

ottawa-convention-centre

CCA Conference 2018

The Ottawa Chapter of the Canadian Celiac Association is proud to be hosting the 2018 national conference, which will take place on June 9, 2018 at the Shaw Centre in downtown Ottawa, just steps from Parliament Hill, the Byward Market, the Rideau Centre and countless other attractions. Registration is now open at www.ccaconference.ca and we’re looking forward to an amazing event!

We are presenting not one but two keynote speakers:

  • Dr. Marios Hadjivassiliou, a professor in neurology at the University of Sheffield in the United Kingdom. Dr. Hadjiovassiliou is a top world researcher in the area of the neurological manifestations of celiac disease and non-celiac gluten sensitivity. In particular, he has conducted extensive research into gluten ataxia.
  • Dr. Joseph Murray, a gastroenterologist at the Mayo Clinic in Minnesota, and among the world’s leading researchers in the area of celiac disease and gluten sensitivity. Dr. Murray will be discussing the latest research breakthroughs.

Along with the keynotes, we’re planning to welcome speakers on the following topics:

  • Psychological issues relating to celiac disease and the gluten-free diet
  • Operating a gluten-free bakery, securing safe supplies, and being aware of other major allergens as well
  • Updates from Health Canada and Canadian Food Inspection Agency
  • Ensuring safe gluten-free beans, lentils and pulses are available in the Canadian marketplace

Space is limited so we encourage you to register today. CCA members can attend for just $80 for the day, which includes breakfast and lunch, access to all speaker sessions, and entrance to a gluten-free vendor market that will be taking place alongside the conference. This early bird rate is good just until the end of March so sign up right away!