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!

Hamilton Columnist Mocks The Gluten-Free

A Hamilton newspaper columnist is being criticized for insensitive comments he made in a December 30th, 2017 Hamilton Spectator column.

In an article entitled “2017: Silliness about bitcoin, gluten and identity” Paul Benedett writes:

Gluten-free: What I can say scientifically about gluten-free is, “Oh for God’s sake, have a slice of bread!” Once a word only nutritionists knew, gluten has become the toxic waste of food. If gluten killed people, Italy would be populated by two celiacs and a dog. Calm down. Eat some pizza.

CCA President Anne Wraggett submitted the following response:

To the editor,

I would like to respond to Paul Benedetti’s insensitive comments about gluten and celiac disease. While I’m all for having a little fun and not sweating the small stuff, I am one of over 35,000 Canadians diagnosed with celiac disease. It is actually an autoimmune disorder whereby the intestinal lining is destroyed by gluten, a substance found in wheat, rye and barley. The body turns on itself and the resulting damage hinders the absorption of the nutrients required to remain healthy.

Peer-reviewed scientific research has shown that roughly 1% of the population has celiac disease – so over 350,000 Canadians – but over 90% remain undiagnosed or are misdiagnosed. This is because the symptoms are so varying, and can include gastrointestinal issues, anemia, migraines, neurological issues, chronic fatigue, extremely itchy rashes, and more.

Untreated celiac disease can lead to malnutrition, osteoporosis, and some particularly lethal cancers of the gut. Sad to say, gluten does kill people. Many of us can look back in our family histories and recognize those who died from complications of celiac disease before it was discovered after World War II that treatment with a gluten-free diet could restore health.

Would Mr. Benedetti also mock people with lupus? With type 1 diabetes? With thyroid disease? If not, he should extend the same courtesy to those with celiac disease.

Anne Wraggett
President, CCA Board of Directors

New Celiac Blood Test – While on a GF Diet

A new blood test in experimental phase can identify Celiacs while they are still following a gluten-free diet.

The current blood test relies on detecting an immune response to gluten, but that response gradually fades for people on a gluten-free diet.

The “gold standard” test for diagnosing Celiac Disease requires the daily consumption of gluten for up to 8 weeks, followed by a  biopsy from the small intestine.

On a small test sample of 63 patients,  the new blood test was 96% percent accurate identifying patients with Celiac Disease on a gluten-free diet compared to non-Celiacs.

Read more from our Facebook post.

You can take the test while on a gluten free diet.

Posted by Kelowna Celiac on Monday, December 25, 2017

3 Tips To Stay Safe At Holiday Gatherings

by Selena De Vries

The holidays can be a challenging time to stay gluten-free. But, with a few strategies in your back pocket, the holidays can be confidently enjoyed gluten-free! Here are three tips to try for your next holiday social.

family-gathering

1. Bring your own delicious GF dish to share.

This is a tried and true strategy that will ensure you have something safe to eat. Afraid the host may not approve? Communicate your concern by saying “I have celiac disease and even a tiny bit of gluten can cause me to feel extremely unwell. I have (an event, a presentation, a family outing etc) and it would be very unfortunate if I have to miss it because I’m ill. So, I brought my own dish just in case!” Something along those lines is always well received.

2. Be involved with the food preparation as much as possible.

Whether the event is close to home or far away, technology can be your friend! If someone else is taking the lead in preparing the food, make sure your voice is heard.

In a Kitchen: Physically help prepare the meal by showing up in advance of the event so you can have eyes on potential sources of cross-contamination and ensure all ingredients being used are gluten-free.

Away from the Kitchen: Talk to them on the phone ahead of time to help plan the meal, get family/friends to text you pictures of ingredient lists, Facetime with them in the grocery store, and let them know brand names of your favourite GF foods.

3. Be armed with confident communication skills.

Being able to politely decline food that has had so much love and effort put into it, is one of the hardest things to do as a celiac. Here are some example responses that you may want to try:

Comment: “What do you mean you can’t have these cookies, I made them special just for you!”

Response: Thank you so much for thinking of me. I really appreciate it. But, I have to be so careful as even something as little crumb can make me very ill for days. And, with the holidays, I just can’t risk it. Maybe next time we get together, we can bake cookies at my house!

Comment: Come on, a little gluten won’t hurt!”

Response: I wish that was the case, but unfortunately, even a little would cause my digestive system to be damaged. Just imagine one smartie split into 4 pieces. Just one of those quarters still contains 25x too much gluten for me to safely ingest! It really is such a small amount. So, I do have to be very careful about the choices I make and really appreciate your understanding

Gluten-free Baby: When Parents Ignore Science

different-foods

Key points from Maclean’s January 11, 2017 article

By Toronto Celiac

different-foodsChildren raised eating only a raw, vegan, non-GMO, unprocessed diet get a rude awakening when they enter school and find a whole new world of food: jello, fruit loops and many other foods have never been seen before. Dietitians agree that diets can be dangerous for children.

“Once you start restricting food groups or large chunks of food groups, you start running into problems like vitamin and mineral deficiency.” Karen Kuperberg, RD states that “In general, any diets for kids aren’t recommended. You want kids to eat a variety of foods from all food groups.”

Dr. Peter Green, an expert in Celiac Disease, is all in favour of going gluten-free if it’s medically required. Parents should not self-diagnose themselves or their children however. Parents who are committed to diets do have the advantage of paying close attention to what their children eat. However, the article warns that imposing adult lifestyle choices on infants and children is ill-advised.

Alternative medicine choices for children may mean undiagnosed serious diseases are being missed. “You cannot afford to make any mistakes when it comes to your children.”

If you know someone putting their child on a gluten-free diet as they seem to be bothered by gluten, suggest that before they do that, that they have their child tested for Celiac Disease first. If diagnosed, they can then get the proper information from a Registered Dietitian to ensure that vitamin and mineral deficiency does not become an issue. Their child’s health is at risk.

Read the full article at: http://www.macleans.ca/society/health/gluten-free-baby-when-parents-ignore-science/

Renew or Join the CCA Online

cca renew membership

By Melissa Secord, Executive Director

cca renew membershipCCA National is pleased to announce that both new and returning members can join or renew online.

What is different you may ask? In the past, when people clicked the online payment their information was downloaded and manually entered by CCA staff. Now when members or new folks complete the online application, it will be directly linked to their own accounts.

Members will now be able to see their data with CCA. They can update email and address changes. This investment will allow the small team at CCA National to focus more on providing value-added assistance and to manage our members more proactively. Eventually, we will host an online member portal where members will be able to access Member Only content and discussion forums.

Members who are due for renewal were sent an email today to prompt them to renew. They were given step by step instructions on how to renew online. Members without an email will be sent a hard copy notice in the mail. In the coming month, we will proactively follow up with those members who have lapsed since the start of the year.

Link to our page on the website: https://cca.imiscloud.com/CCA_Mbr/Home/MbrCCA/Benefits.aspx?hkey=a613a736-3fa3-43dd-bbfc-0cb4dbab094c

Eating Disorder Risk Higher For Celiacs

eating-disordersYoung women afflicted with celiac disease, a chronic intestinal inflammation caused by gluten, are at greater risk of eating disorders, such as anorexia, according to a Swedish study published in the journal Pediatrics.

This disease affects 1% of the population and destroys the small intestine, causing deficiencies and malnutrition. According to this Swedish study of approximately 107,000 women, celiac disease also multiplies the risk of anorexia. 18,000 of these, who have celiac disease, were diagnosed by biopsy between 1969 and 2008, at a median age of 28 years.

This anorexia risk is even more elevated prior to the diagnosis of celiac disease, according to the study. Prior to the age of 19 years, a diagnosis of anorexia was 4.5 times more likely among celiacs compared to those without the disease.

Avoiding this insoluble protein, found in wheat, barley, oats and rye – the grains most often used for bread, pastries and pasta, as well as many prepared dishes – is for now the only recommended treatment.

Consequently, this food restriction can, in certain cases, become excessively strict, out of fear of the symptoms reappearing (such as chronic diarrhoea, weight loss, vomiting, fatigue, circulation problems, neurological issues, etc.) and this approach can lead to anorexia, according to the study.

According to the French Society for the Gluten Intolerant, one European in 100 will develop celiac disease. However, only 10 – 20% of these are diagnosed in France. Blood tests allow for the detection of the antibodies characteristic of
gluten intolerance.

To view the study: http://pediatrics.aappublications.org/content/early/2017/03/30/peds.2016-4367