Gluten-Free Wellness Group Meets Wednesday September 26, 2018

selena-de-vries

Wednesday night, September 26, 2018 our Kelowna Celiac and Gluten Intolerant Wellness Group with Registered Dietitian, Selena De Vries meets.

When: 7 – 8 pm

Where: Orthoquest Kelowna Kinesiology at 1021 Richter Street, Kelowna, BC

Cost: Free to CCA members, $2 donation for non-members.

Topic: Theme is family friendly, gluten-free recipes for back to school/work and gluten-free holiday strategies (Thanksgiving and Halloween).  As always, we address any questions that come up in these meetings.  At this session, we will also take a vote for topics for the upcoming group sessions.

Contact Selena at 778-990-6047 for more information.

Action Needed By Sept 14: Write Govt On New Beer Labelling Regs.

gluten-free-beer

gluten-free-beerThe Government of Canada is proposing to amend the compositional standards for beer and ale, stout, porter and malt liquor. Their aim is to modernize the Food and Drug Act to recognize the new variations of beer, flavourings and preparations.

In addition to this review, the Government is also recommending to require beer manufacturers to declare allergens including gluten on their product labels.

As the voice for people adversely affected by gluten, the Canadian Celiac Association, with assistance from the Professional Advisory Council, has submitted its response in support of the proposed amendments. View our response here.

Pour on the support by September 14.

Why do we need your help?
During amendments to the regulations in 2010, the beer lobby was very effective in influencing politicians and bureaucrats to not be included in regulations requiring declarations of allergens or gluten on their labels or products. They were exempt. Now eight years later, the government is now proposing to remove this exemption.

The Government of Canada needs to hear from concerned consumers who are impacted by these regulations. The more people and groups who submit official responses, the more likely the amendments will be implemented.

Step one: Click here to download a template letter.
Step two: Add your name and address
Step three: Submit by email to: [email protected] by September 14 using the subject line: Canada Gazette, Part I, Volume 152, Number 24: Regulations Amending the Food and Drug Regulations (Beer) – June 16, 2018
Step Four: Tell us you sent a letter by emailing us at [email protected]

BONUS STEP!
Step Five: Donate to CCA to allow us to continue to be your advocate in Ottawa and across the country for the right to safe gluten-free food. Donations can be made securely online, via CanadaHelps by clicking here.

Thank you for your help and support!

CCA Publishes Management of Bone Health Paper

The Professional Advisory Council of the CCA has written a paper on bone health. It’s now been published and will become one of our standard resources. It’s also 6 pages long, so here are the key points.

  • Celiac disease (CD) is a chronic disorder that affects bone structure. It requires strict lifelong adherence to a gluten-free diet (GFD), and long-term monitoring of patients with CD should include assessment of bone health.
  • Bone health assessment in CD with malabsorption requires bone mineral density (BMD) testing at diagnosis. Correction of malabsorption of calcium, phosphate, and vitamin D should be ensured. At the time of diagnosis, patients should receive counselling on a GFD and on the nutrition required to restore bone health. Intake of calcium and vitamin D should be optimized using dietary sources, whenever possible. Patients should be encouraged to participate in weight-bearing exercises, limit alcohol intake, and avoid cigarette smoking.
  • Evidence for management of low BMD and prevention of fractures in CD is limited. Strict adherence to a GFD seems to be the only effective treatment to improve BMD in adults with CD and decrease the risk of fractures.

If you would like to read the whole paper, you can find it at http://www.cfp.ca/content/cfp/64/6/433.full.pdf

Question: Can I get a safe food list from the CCA?

Answer:

Many people would prefer to use a list of safe products instead of reading ingredient lists.

The CCA has made a specific decision not to put out safe food lists, and we strongly urge Canadians to avoid them too. We worked very hard with Health Canada to get to the point where the information is present on the package. Because of this work, you are looking for four words: wheat, rye, barley, and oats.

gluten-free-listYour responsibility is reading every label every time you buy a product looking for those four words. Reading labels might seem like an overwhelming task, but here’s a tip – if you can’t pronounce an ingredient name, it doesn’t contain gluten. Ingredient lists use common names for gluten sources.

Some U.S. organizations produce safe lists and this is because of different regulations, barley and rye sources may be hidden in other ingredient names. It’s important to note that the U.S. lists are not correct for products sold in Canada. Just because a product has the same name in the U.S. and Canada does not mean that the ingredients are the same. If you want an example, search for “Smarties” and look at the images. You will see two completely different candies in Canada and the U.S.

If you have a question you’d like answered, email [email protected]

Gluten-Free Cowboy Cookies

Ingredients

  • 1 cup unsalted butter
  • 1 cup white sugar
  • 1 cup brown sugar
  • 2 tablespoons vanilla
  • 2 eggs
  • 2 cups Gluten Free Baking Blend
  • 2 1/2 cups Gluten Free Instant Oats
  • 1 Tsp Baking Soda
  • 1/2 tsp Salt
  • 1 Tsp Baking Powder
  • 2 cups chocolate chips

Directions

  1. Cream the butter and sugars.
  2. Add the vanilla and eggs and beat again until it looks frothy.
  3. Add the flour, baking powder, baking soda, salt.
  4. Using a spatula, gently fold in the oats and chocolate chips.
  5. Using a small cookie scoop, put on ungreased cookie sheet.
  6. Bake at 350 degrees for 8 minutes.

Note: These cookies brown very fast. Even if they feel soft at 8 minutes they will be fully baked. You should get about 5 dozen or 60 tablespoon 2 bites sized cookies.

What Is Gluten Ataxia?

By Jane Anderson | Reviewed by Emmy Ludwig, MD

Gluten Ataxia is a Rare Autoimmune Condition That Can Damage Your Brain
Gluten ataxia, a rare neurological autoimmune condition involving your body’s reaction to the gluten protein found in wheat, barley, and rye, can irreversibly damage the part of your brain called the cerebellum, according to practitioners who first identified the condition about a decade ago. This damage potentially can cause problems with your gait and with your gross motor skills, resulting in loss of coordination and possibly leading to significant, progressive disability in some cases.

However, because gluten ataxia is so relatively new, and not all physicians agree that it exists, there’s as of yet, no accepted way to test for it or to diagnose it. But that may be changing: a group of top researchers in the field of celiac disease and non-celiac gluten sensitivity has issued a consensus statement on how practitioners can diagnose all gluten-related conditions, including gluten ataxia.

In Gluten Ataxia, Antibodies Attack the Cerebellum
When you have gluten ataxia, the antibodies your body produces in response to gluten ingestion mistakenly attack your cerebellum, the part of your brain responsible for balance, motor control, and muscle tone. The condition is autoimmune in nature, which means it involves a mistaken attack by your own disease-fighting white blood cells, spurred on by gluten ingestion, as opposed to a direct attack on the brain by the gluten protein itself. Left unchecked, this autoimmune attack usually progresses slowly, but the resulting problems in balance and motor control eventually are irreversible due to brain damage. Up to 60% of patients with gluten ataxia have evidence of cerebellar atrophy—literally, shrinkage of that part of their brains—when examined with magnetic resonance imaging (MRI) technology. In some people, an MRI also will reveal bright white spots on the brain that indicate damage.

How Many People Suffer From Gluten Ataxia?
Because gluten ataxia is such a newly-defined condition and not all physicians accept it as of yet, it’s not clear how many people might suffer from it. Dr. Marios Hadjivassiliou, a consultant neurologist at Sheffield Teaching Hospitals in the United Kingdom and the neurologist who first described gluten ataxia, says as many as 41% of all people with ataxia with no known cause might, in fact, have gluten ataxia. Other estimates have placed those figures lower — somewhere in the range of 11.5% to 36%. Since ataxia itself is a rare condition—affecting only 8.4 people out of every 100,000 in the U.S.—that means fewer still actually have gluten ataxia. Estimates are much higher for the number of people with celiac disease and gluten sensitivity who have neurological symptoms.

Gluten Ataxia: Gluten-Induced Neurological Problems
Gluten ataxia symptoms are indistinguishable from symptoms of other forms of ataxia. If you have gluten ataxia, your symptoms may start out as mild balance problems—you might be unsteady on your feet, or have trouble moving your legs. As symptoms progress, some people say they walk or even talk as if they’re drunk. As the autoimmune damage to your cerebellum progresses, your eyes likely will become involved, potentially moving back and forth rapidly and involuntarily. In addition, your fine motor skills may suffer, making it more difficult for you to work writing instruments, zip zippers, or to manipulate buttons on your clothing.

Diagnosis Not Straightforward for Gluten Ataxia
Since not all physicians accept gluten ataxia as a valid diagnosis, not all doctors will test you for the condition if you show symptoms. In addition, experts in the field of gluten-induced disease only recently have developed a consensus on how to test for gluten ataxia.

Gluten ataxia diagnosis involves the use of specific celiac disease blood tests, although not the tests that are considered the most accurate to test for celiac disease. If any of those tests shows a positive result, then the physician should prescribe a strict gluten-free diet. If ataxia symptoms stabilize or improve with the diet, then it’s considered a strong indication that the ataxia was gluten-induced, according to the consensus statement.

Gluten Ataxia Treatment Involves Strict Gluten-Free Diet
If you’re diagnosed with gluten ataxia, you need to follow a very strict gluten-free diet with absolutely no cheating, according to Dr. Hadjivassiliou. There’s a reason for this: the neurological symptoms spurred by gluten ingestion seem to take longer to improve than the gastrointestinal symptoms, and seem to be more sensitive to lower amounts of trace gluten in your diet, Dr. Hadjivassiliou says. Therefore, it’s possible that you might be doing more damage to yourself if you continue to ingest small amounts of gluten. Of course, not all physicians agree with this assessment, or even necessarily with the advice to eat gluten-free if you have otherwise unexplained ataxia and high levels of gluten antibodies. However, it does seem to be backed up by anecdotal reports from people with diagnosed gluten ataxia and from people with severe neurological problems associated with celiac disease: Those people say the neurological symptoms take much longer to resolve; while some stabilize but never improve.

Numers Are Small
The number of potential gluten ataxia sufferers is very small when compared with the numbers of people with celiac disease, and it’s also small when compared with estimates for how many people have gluten sensitivity. However, many people with celiac disease and gluten sensitivity also suffer from neurological symptoms, which often include gluten-related peripheral neuropathy and migraine. Some also complain of balance problems that do seem to resolve once they go gluten-free. It’s possible that, as more studies are conducted on gluten ataxia, researchers will find even stronger links between that condition, celiac disease, and gluten sensitivity. In the meantime, if you have symptoms similar to those of gluten ataxia, talk to your doctor. You may require testing to determine if you have another condition that can cause similar symptoms.

Article Sources
Fasano A. et al. Spectrum of gluten-related disorders: consensus on new nomenclature and classification. BMC Medicine. BMC Medicine 2012, 10:13 doi:10.1186/1741-7015-10-13. Published: 7 February 2012
Hadjivassiliou M. et al. Dietary Treatment of Gluten Ataxia. Journal of Neurology, Neurosurgery and Psychiatry. 2003;74:1221-1224.
Hadjivassiliou M. et al. Gluten ataxia in perspective: epidemiology, genetic susceptibility and clinical characteristics. Brain. 2003 Mar;126(Pt 3):685-91.
Hadjivassiliou M. et al. Gluten Ataxia. The Cerebellum. 2008;7(3):494-8.
Rashtak S. et al. Serology of celiac disease in gluten-sensitive ataxia or neuropathy: role of deamidated gliadin antibody. Journal of Neuroimmunology. 2011 Jan;230(1-2):130-4. Epub 2010 Nov 6.

Osteoporosis and Celiac Disease

by Nicole LeBlanc, Dt.P. (Translation by Mark Johnson)

Osteoporosis is a frequent complication of celiac disease, linked to the malabsorption of calcium.

This nutrient is absorbed in the first portion of the small intestine, which is also the main area of intestinal damage in someone with untreated celiac disease. Osteoporosis is a condition that affects the skeleton and is characterized by low bone density and the deterioration of bone tissue, rendering the bones more fragile. This problem can lead to pain as well as deformities in the spine.

Prevalence

Indeed, osteoporosis is a major public health problem in Canada, and the prevalence is only increasing with the aging population. Looking at gender, women are four times more likely than men to have osteoporosis – the decline in estrogen production results in a 2-5% loss of bone density per year over the course of the first few years post-menopause. Osteoporosis is also more common in people with a new celiac diagnosis than among the general population – and with celiacs, men have the same percentage of risk as women do.

Risk factors

People are at greater risk if they present with the following factors:

  • Family history of osteoporosis (e.g. fractures in the hip, wrist or vertebrae)
  • Being a woman and over 50 years of age
  • Weakened bone structure and a weight at the lower end of the healthy range – BMI between 18.5 and 25
  • Early menopause (before the age of 45)
  • Smoking
  • Lack of physical activity
  • Low intake of dietary calcium
  • Excessive caffeine consumption (more than four cups per day)
  • Excessive alcohol consumption
  • Using certain medical drugs, including cortisone, for more than three months
  • Diseases that interfere with the absorption of nutrients (e.g. Crohn’s disease, celiac disease)

How to Prevent Osteoporosis:

To prevent osteoporosis, medical experts advise above all to have a balanced diet, heavy on plant consumption, and sufficient intake of calcium and vitamin D, and be sure to get physical exercise. In celiac patients, strict adherence to the gluten-free diet is the most important factor that will contribute to the regeneration of the intestinal mucosa, ensuring better absorption.

Get physical exercise
Physical activity, from childhood onwards, promotes the formation of strong bones. Throughout your life, exercise helps to maintain optimal bone mass and musculature, which supports your body’s weight. For example, walking, running, tennis, soccer, etc. Exercise that requires handling or pushing heavy objects is also beneficial.

Choose foods that are rich in calcium
Calcium is an important mineral. It contributes to bone metabolism, the maintenance of blood pressure levels, muscle contraction, and the activation of many enzymatic systems involved blood coagulation. Though the matter continues to be debated, currently calcium
requirements are estimated at between 700 and 1,300 mg per day, depending on age and sex. These recommendations may change in the future, depending on the findings of research that is underway.

Choose foods that are rich in vitamin D
This vitamin helps the body to better absorb calcium, no matter the source (food or supplements). It is difficult to meet your vitamin D requirements without the regular consumption of dairy products or milk substitutes that are fortified with calcium and vitamin D. Very often, one’s vitamin D requirements can only be met through food. In addition, living in the north (as we do) and aging both make it more difficult to produce vitamin D following sun exposure. It is therefore recommended that people over the age of 50 take a daily
supplement of 1,000 IU of vitamin D.

Reduce excess intake of calcium, alcohol, salt and meat
Although their influence on bone health remains unclear, it is suggested to moderate your consumption of animal protein, caffeine, alcohol and salty foods as these promote an increase in calcium loss through the urine.

Quit smoking
Stopping smoking has long been encouraged to support heart health and to help prevent lung cancer. Many studies confirm that smoking is also harmful to bone density.

Is Worcestershire sauce gluten-free?

From the From the CCA Pocket Dictionary CCA’s Pocket Dictionary, Acceptability of Foods & Food Ingredients for the Gluten-Free Diet
$6.95 members / $9.95 non-members, reduced prices for more than 10 copies

heinz-worcestershire-sauce

When it comes to this popular savoury sauce, you should always check the label for barley, which of course always contains gluten. Worcestershire also may contain malt vinegar, which is not gluten-free and is not allowed on a gluten-free diet. However, some brands are free of malt vinegar and are gluten-free. For example, Heinz Worcestershire is safe, but Lee & Perrins brand is not.

Check the label every time you buy, since a company can change its product’s ingredients without warning.

Another ingredient you might see included in this sauce is buckwheat. From the name, you might think it’s a no-no. However, it doesn’t actually contain wheat so it’s fine for your gluten-free diet. It’s a starchy seed of the plant family Polygonaceae, which includes rhubarb.

Confusing May Contain Warnings Explained

By Sue Newell

A large food retailer in Canada adds “May contain wheat” warnings to virtually all of its house brand products.  Snack foods imported from some countries regularly list all 12 priority allergens on their ingredient lists. Products with a gluten-free claim also carry “may contain wheat” warnings (and this is encouraged by Health Canada and the Canadian Food Inspection Agency).  Almost all the ingredient labelling regulations in Canada are set by regulation but precautionary labels remain in the “optional” category.  No wonder people are confused about the words “May contain”.

In the last two years, products have appeared in our stores carrying both a “Gluten-free” claim and a “May contain wheat” warning. According to Health Canada, this labelling rule is acceptable in situations where the product meets the criteria for a gluten-free claim (no gluten ingredients, product made specifically to be gluten-free, and no gluten contamination at levels above 20 ppm) but may have levels of gluten contamination below 20 ppm. The “May contain” warning is provided as a service to people with a true wheat allergy. There are no maximum safe levels for allergy warnings.

So what should someone with celiac disease or non-celiac gluten sensitivity do with these products? Here are our recommendations:

  1. “Gluten-free” claims must be true so they take precedence over any precautionary “May contain wheat” claims. Go ahead and eat the product.
  2. If there is no “gluten-free” claim, but there is a “May contain” warning for any gluten grain, do not eat the product.

The fact that “May contain” labels are voluntary triggers fear for some consumers. Product manufacturers are “responsible for the safety of their products, including addressing potential risks associated with the presence of allergens”.  In other words, if the risk is significant and not controlled, they must inform consumers.

Meeting Health Canada: As the voice for people with CD and GS, CCA representatives recently met with Health Canada in June. CCA is also involved in stakeholder consultations related to prescription drugs, natural health products and new beer standards. We will continue to advocate for ways to make labelling more clear for consumers.

CCA Elects a New President

Treena-DuncanMy name is Treena Duncan and I am honoured to have been elected as the President of the CCA. It is a tremendous honour and privilege to serve in this way. I live in Surrey, British Columbia, and am a member of the amazing Vancouver Chapter. I have been on the National board for four years. I have celiac disease, as do my two teen-aged children. The CCA has been a source of support and education on our celiac journey and I am thankful that they have been there for us. I have particularly benefited from the Facebook group, which is a great source of information and support moderated by the CCA. Check it out if you haven’t already!

I want to take a moment to acknowledge the gift of leadership offered to us by Anne Wraggett, now past president. Anne has led the organization through some challenging times, and her skill and commitment have ensured that the association will be there to advocate for Canadians with celiac disease or gluten intolerance for years to come. The national board is made up of committed volunteers, and I welcome new members, Janet Bolton and Tamara Close. We will benefit greatly from their amazing gifts and skills. Mark Johnson has completed his term on the board. We are truly grateful for all he has brought to the board table, and know that he will continue to offer leadership as president of the Ottawa Chapter, and as a dedicated national volunteer.

As we look to the coming year, the board is working toward fulfilling our three-year strategic plan. Top priorities for us are working closely with the chapters, evaluating our organizational structure to ensure efficiency and effectiveness in the services offered and creating a plan for financial sustainability. As you know, we are a not-for-profit organization and depend on membership and donations in order to continue our work. Our Executive Director, Melissa Secord has been a wonderful resource to the association and we are benefiting from her leadership in many ways. There is exciting research being conducted that will hopefully lead to major medical breakthroughs in the future. The CCA is proud to be able to support this research through our JA Campbell Research fund.

We have been engaging in work to improve access to safe foods. You are likely all aware of our Gluten-Free Certification Program which identifies through our trademark, safe foods in grocery stores. Just over one year ago, we partnered with the Gluten-Free Food Program (GFFP) which offers training and third party verification for food establishments serving gluten-free food. I know I find eating out very challenging, and this program will make finding safe places to eat so much easier! I was at the check-in desk of a hotel recently and listened as a celiac guest tried to identify safe restaurants in the area by asking a front desk clerk, who had no idea! I look forward to a time when this program is so prevalent that we will be able to point them to GFFP restaurants! We have also been busy advocating in Ontario, with great support from the community, to have the diagnostic blood screening test covered by provincial health insurance. Unfortunately, Ontario is the only province not cover the test. We hope that together our voice will motivate the new Ontario government to correct this injustice.

Finally, we are proud to have worked with the Canadian government and Frank Massong of the Allergen Control Group to complete research in the area of the delivery of safe grains and related products. This was a major three-year project which was recently completed. Delegates at the Ottawa conference were provided an overview. Watch for a special recording sharing the results and what this will mean for consumers. Thanks to David Congram, board member, who has been the lead on this project. David along with a number of other volunteers and staff have dedicated many hours to this project, which will serve to benefit us all.

I would love to hear from you about the ways in which the CCA can be of service to you. Please contact me at [email protected] with your ideas and suggestions.

Treena Duncan
President, CCA Board of Directors


Check out Treena’s new monthly video message!
We’re finding new ways to connect with you and keep you up to date on CCA news and activities. Watch for Treena’s message on our CCA Facebook Group or YouTube Channel. Her first one is now available. While you are there, check out some of our other topics and education sessions.