Busting myths: So-called “gluten allergy”

wheat grain on stalk

Courtesy Kitchener-Waterloo Chapter Newsletter

wheat grain on stalkThere are a lot of myths out there about what celiac disease is, or what non-celiac gluten sensitivity is, but the one I come across most often is the mysterious “gluten allergy”. That may be an easy way to characterize celiac disease to “get the message across” to restaurant wait staff, but allergies and celiac disease do not even involve the same immune system.

“Gluten” is a collective noun – a word that describes a group of several different proteins: secalin in rye, horedin in barley, and glutenin in wheat, among others. Since all the proteins lead to the same reaction in someone with celiac disease, it’s easier to use one simple word, “gluten”.

People with a wheat allergy might be fine with gluten but there are three other classes of proteins in wheat that can trigger their allergic reaction.  Recent Canadian research suggests that about 0.2% of the population has a wheat allergy, about 5 times fewer that are believed to suffer with celiac disease.

You can have celiac disease, you can have nonceliac gluten sensitivity, you can have a wheat allergy, or you can have dermatitis herpetiformis. But a gluten allergy? As far as we know, such a condition does not actually exist. Unless you’ve engaged in scientific testing, with your response to pure gluten (not gluten that comes as part of wheat, rye or barley), how could you know?

That’s why wheat, and not gluten, is listed as a priority “allergen” on food labels. Gluten labelling is of course critical for us as celiacs, but for people with allergies, wheat is the one we can identify with. But remember, celiac is an autoimmune disease, nothing like an allergy and should not be confused as such.

Pizza Potluck Recap and Photos

mary hicks award

Thanks to Chapter President Irene Wiseman who took these photos of Sunday’s Pizza potluck.

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The turnout was small (perhaps the weather was a little too nice?) but those that attended enjoyed Pizzas supplied by Jim’s Place, a Chapter sponsor, in Vernon. Regular members brought salads and desserts.

Cake was supplied to us by “Inspired by Happiness“, another chapter sponsor. According to Irene, these were the best cakes that she has EVER purchased. Inspired by Happiness also provided each event attendee a coupons for a free cake. See what happens when you miss a potluck?

At the meeting portion of the potluck, there was discussion on how to revamp CCA membership. Some suggested that the membership fee should be done away with in the hopes that people would then be more likely to donate to the CCA. Volunteer burnout is also another issue with most chapter. It has been a factor with the Kelowna chapter – with many long-term executive members wanting to step down, but no one willing to step forward to take their place. If you are interested in volunterring please contact chapter president Irene Wiseman at [email protected]

CCA standardizes post-diagnosis follow-up for celiac disease

celiac awareness month

celiac awareness monthFollowing several months of research, discussions and consultations, the Canadian Celiac Association (CCA) is celebrating 2016 Celiac Disease Awareness Month with the unveiling of a detailed algorithm to be distributed to all family doctors across Canada. With awareness and understanding of celiac disease varying greatly within the medical community, the result until now has been a hodgepodge of treatment and follow-up plans that leads to confusion and, in many cases, continued illness and suffering.

The new best practices algorithm, developed by the CCA’s Professional Advisory Council, aims to bridge this gap by clearly outlining the diagnosis and follow-up regimen for a Canadian with celiac disease.

“We hear it all too often,” says Anne Wraggett, president of the CCA. “Some doctors give the patient their diagnosis and simply send them on their way. Others recognize the need to monitor vitamin and mineral absorption levels, watch out for bone density problems, and be aware of the connection between celiac disease and other serious disorders such as type 1 diabetes and thyroid disease.”

“This is all about creating a standardized regimen, based as much as possible on evidence-based medicine,” adds Sue Newell, operations manager for the CCA. “We hope that this will lead to a consistent approach among all medical doctors, naturopathic doctors, gastroenterologists and other medical professionals. We need everyone ‘singing from the same songbook’ on this, so those diagnosed with celiac disease get the support they need.”

Medical professionals, patients and others can easily download the best practices algorithm from the CCA website (http://www.celiac.ca/?page_id=3835). Our popular website receives millions of hits each year and contains up-to-date scientific information and details of the CCA’s programs to support all Canadians with celiac disease or gluten sensitivity.

The Canadian Celiac Association is the national voice for the roughly two million Canadians who are adversely affected by gluten, and we are dedicated to improving diagnosis rates and quality of life.

Pizza Potluck May 1st

gluten-free-pizzaOne next Celiac Meeting is Sunday, May 1st.

This will be a special gluten-free pizza themed potluck!

This is a CHANGE from regular meetings.  Please just bring a salad or dessert. The chapter will pay for the pizzas.

Celiacs & their families, can each enjoy their two slices of gluten-free pizza.  A great time to bring the kids and your teenagers.

We need to know who will be coming by April 24 so we can order enough pizzas. Please email Marie at [email protected] or phone 250-763-7159 if you plan to attend.

Non-celiac members will pay $5 for the 2 slices.

Lake Country Winfield Seniors Activity Centre, 9832 Bottom Wood Lake Road

Doors open at 12:00-noon

We will ask adults to each donate a ‘toonie’ to defray the hall rental costs.

What is the CCA Professional Advisory Council?

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As we approach the month of May each year, there is always an interesting debate about what to focus on for Celiac Awareness Month. This year was easy! We are highlighting two excellent new documents created by the CCA’s Professional Advisory Council (PAC) and designed to provide much-needed guidance to primary health providers:

  • Follow-up of Patients with Celiac Disease: this guide, for medical doctors, aims to ensure proper follow-up and care for a patient diagnosed with celiac disease
  • Non-Celiac Gluten Sensitivity: also for medical doctors, this document explains non-celiac gluten sensitivity and how to diagnose it and differentiate it from celiac disease

Do you know what the PAC is? It is an expert advisory body for the CCA comprised of medical doctors (both general practitioners and specialists), dietitians, and even a cereal scientist! Their role is to help ensure that the CCA remains the best source of quality, science-based factual information on celiac disease, gluten sensitivity, and the gluten-free diet. The combined knowledge and dedication of this group of professionals is absolutely critical to the CCA’s reputation as a reliable, invaluable resource. This is a volunteer role; they give their time to the cause out of the goodness of their hearts, and we truly appreciate it. Hats off to the PAC!

Watch for more news about Celiac Awareness Month shortly and you will soon find the new documents online at www.celiac.ca. Take a copy to your next medical appointment.

Hope spring is coming your way!

Anne-Wraggett-ccaAnne Wraggett
President, Canadian Celiac Association

Canary Seed – Not Just for Canaries

canary-seed

Canary Seed, coming to a bake shop near you?

canary-seedThere has been a lot of recent media coverage about canary seed, a grain grown in Saskatchewan and newly approved for use in food for humans. Canary seed is high protein and can be used in a wide variety of baked goods as a whole grain or ground into flour. It has the potential to replace sesame seed in a number of foods; an important substitution to replace a primary allergen.

One of the reasons for the revival of this seed is its gluten free nature, although it does contain a protein similar to other proteins found in wheat. To be clear, there are no proteins in canary seed that are similar to gluten found in wheat, rye or barley, so it is safe for people on a gluten free diet. There is, however, a protein in canary seed that might cause a problem for someone with a wheat allergy.

As a result, products made with canary seed are expected to carry a precautionary statement something like this: may not be suitable for consumers with a wheat allergy. This might be a bit confusing at first glance, but Health Canada was very careful in the pre-approval research, consulting scientists with expertise in molecular biology, microbiology, toxicology, chemistry and nutrition to ensure the validity of the results. The technical details are on the Health Canada web site. Allergenicity considerations are covered in section 9, and labelling is covered in section 10.

See this Globe and Mail article for more details.

Taxes: Celiacs can claim the extra cost of food as a medical expense

celiac tax deduction

celiac tax deductionOnce again it’s tax time.  As a Celiac did you know that if you are directed by your doctor to be on a Gluten-Free (GF) diet, you can claim the incremental cost of food as an eligible medical expense?  Below is what the Canada Revenue Agency has to say about it:

Persons who suffer from celiac disease (gluten intolerance) are entitled to claim the incremental costs associated with the purchase of gluten-free (GF) products as a medical expense.

What is the “incremental cost”?

The incremental cost is the difference in the cost of GF products compared to the cost of similar non-GF products. It is calculated by subtracting the cost of a non-GF product from the cost of a GF product (see example below).

What items are eligible?

  • Generally, the food items are limited to those produced and marketed specifically for GF diets. Such items include, but are not limited to, GF bread, bagels, muffins, and cereals.
  • Intermediate items will also be allowed where the patient suffering from celiac disease uses the items to make GF products for their exclusive use. These include, but are not limited to, rice flour and GF spices.

What if there are several people consuming the GF products?

If several people consume the products, only the costs related to the part of the product consumed by the person with celiac disease are to be used in calculating the medical expense tax credit.

What documents do I need to support a claim for the medical expense tax credit?

If you are filing your income tax and benefit return electronically or on paper, do not send any supporting documents. However, keep the following documents in case we ask to see them at a later date:

  • a letter from a medical practitioner confirming the person suffers from celiac disease and requires GF products as a result of that disease
  • a receipt to support the cost of each GF product or intermediate product claimed
  • a summary of each item purchased during the 12-month period for which the expenses are being claimed (see example below)

Example

1. Item: bread
2. Number of items purchased: 52
3. Average cost of non-GF product: $3.49
4. Average cost of GF product: $6.99
5. Incremental cost (line 4 minus line 3): $6.99 – $3.49 = $3.50
6. Amount to claim (line 5 multiplied by line 2): $3.50 x 52 = $182.00

Gluten-Free Wellness Group Meets April 14th

mary hicks

Thursday night, April 14, 2016 we have our Kelowna Celiac and Gluten Intolerant Wellness Group with Mary Hicks, our Dietitian.

When: 7-8 pm
Where: Interior Health, Capri Centre Mall, Kelowna, 118 – 1835 Gordon Drive, Room 3,

Free to CCA members, $2 donation for non-members.  It’s 7 pm to 8 pm at the Capri Health Centre (118 – 1835 Gordon Drive) meeting room three with parking available at the back by Capri insurance.

Please bring your best gluten-free bread recipe to share.  If you don’t bake your own bread, this discussion may inspire you!  So, even if you don’t have a recipe please join us for discussion and friendship.

Contact Mary Hicks 250-717-3639 for more information.

FAQs about glutenfreecoupons.ca

Courtesy Sue Newell, CCA National Office

We get a lot of questions about the service that mails coupons for gluten-free products to your home. Here are some common questions and answers:
 

Q. Is this a CCA program?

A. No. It is run by a third party. The CCA endorses the program due to the value it offers people, but we do not run the program.
 

Q. Do I get the coupons automatically when I join the CCA?

A. No. You must sign up for the coupons at www.glutenfreecoupons.ca
 

Q. Does the CCA get any money from the program?

A. Yes, the CCA receives a payment based on the number of participating vendors.
 

Q. How often are coupons mailed out?

A. Twice a year – May and October.
 

Q. How do you pick the coupons I get?

A. There are four distribution categories – Atlantic Canada, Quebec, Ontario, and the West. You get the coupon set that matches your address. Sometimes vendors choose to offer coupons in only one area. Some products are available in only one area of the country.
 

Q. Why can’t I use a coupon for (fill in your favourite product name here)at any store that sells it?

A. Some coupons are offered by the manufacturer, some coupons are offered by the store. Manufacturer’s coupons can generally be used anywhere the product is sold. Products offered by stores can only be used in those stores.
 

Q. I don’t want to get coupons from (fill in store name here) because there isn’t one near where I live.

A. You can feel free to throw those particular coupons out. Alternatively offer them to someone who lives near the store. Post a note on the CCA’s Facebook Forum (CanadianCeliacAssociation). I’m sure you will find a taker!
 

Q. Can I get my coupons online?

A. Some manufacturers are exploring online coupons and a few have already been made available. If you live in Ontario, see below for an offer from Flamingo.

Video Series for Gluten-Free Newbies

Boston’s Children’s Hospital has created a series of videos on Celiac Disease. These short videos feature information from families with Celiac Disease and practitioners in the field.

Click below for each of the topic videos:

I. Introduction:Experiencing Celiac Disease

II. What is Celiac Disease?: Diagnosis and treatment

III. Diet InformationHow to start and maintain a gluten-free diet.

IV. A Gluten-Free HomeHow to keep your kitchen organized and safe.

V. ShoppingHow to shop for gluten-free food.

VI. CookingHow to cook and bake gluten-free foods.

VII. SchoolHow to prepare your child with celiac disease for school.

VIII. Eating OutHow to order and eat out at restaurants.

IX. Away From HomeHow to plan for activities and travel.

X. Emotional Adjustments: How to adjust & cope.

XI. Support GroupResources and support for families.

XII. Kids Speak: What kids with celiac disease have to say about life with the condition.