Victoria Celiac News $3.00
Resources for people who need to eat gluten-free
Volume 23 Issue 1, February/March 2014 [ISSN 1927–3231]
victoriaceliac.org
Pies and Perogies Now
Possible on the Gluten-Free
Diet!
In This Issue
Upcoming Events
2
Chapter Facebook Page
2
Contribute to Your Newsletter
2
Celiac Scene
3
Automatic Notification of Recalls/Allergy Alerts
3
3
Itching to Read the Celiac News Online?
Celiac Speakers Available For Comment!
3
Socialize With Your CCA!
3
Annual General Meeting
3
5
Safe French Fries in Victoria & Area
Can I Get You a Soy Latte?
5
5
Good Old Olive Grove Restaurant
Newsletter Submission Contest ConISSN 1927-3231
tinues! 5
01
Cozy at Home with Hanna - GF Rice
Wraps
6
6
2014 National Conference Calgary
9 771927 323008
Gluten-Free-Foodies Dare to Dine Parent Corner Special Thanks to Anti-Panic Sponsors
Gluten-Free Sightings Around Town
Honouring Local Hero - Joyce Schnetzler, RD
Obscure Sources of Gluten
Thank You For Your Food Bank Donations Bake My Day Makes Our Day!
CCA Partners with Rai Grant Insurance
Sue Newell on the Hot Seat
Online Gallery
Road to Diagnosis
Tip for Chocolate Crumbs
Gluten-Free Cosmetics
New Gluten-Free Cookbooks From 2013 – At Your Local Library!
Classes Offered - The New Gluten Free, Demystifying Gluten-Free International Celiac Disease Symposium 2013
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February/March 2014
Victoria Celiac News 23:1
Upcoming Events
Victoria Chapter Address:
PO Box 5457 Stn B, Victoria, B.C., v8r 6s4.
Annual General Meeting
When: Sunday April 13, 2014 2-4pm
Where: Basement hall of St Aidan’s Church bit.ly/MaptoStAidan
Parking: Plenty in church parking lot .
Accessibility: Wheelchair & walker accessible — take elevator in
lobby to lower floor.
See page 3 for more information.
Support Line for advice is 250-472-0141.
Victoria Chapter e-mail is victoriaceliacs@hotmail.ca
Chapter Reg. Charity #89887-2734 rr0001.
Publisher’s Warning: The Victoria Chapter of the Canadian
Celiac Association, the editor, and the National Office of the
Canadian Celiac Association do not endorse any products,
recipes, or businesses contained in the Victoria Celiac News,
nor do they accept responsibility for any damages resulting
from any information contained therein. Readers are advised
to check the validity of any information with their Medical,
Dietary and Pharmaceutical professionals.
PlanetOrganic.ca GF Store Tour - Public
10-11:30 Second Saturdays, March 8, April 12
GF walk & talk through the aisles of their location at McKenzie
& Quadra. Get the GF goods from diagnosis to diet from Ellen
Bayens of theCeliacScene.com/VictoriaCeliac.org.
Free. Public welcome. Registration not required.
LifestyleMarkets.com GF Social Support - Public
Second Tuesdays 6:30 - 8pm, March 11, April 8
Meet in in the deli section of Lifestyle Markets on Douglas.
Conversation and camaraderie with others going gluten free.
Facilitated by Ellen Bayens of theCeliacScene.com/VictoriaCeliac.
org. Come prepared to receive and lend support. Free. No registration required.
Mission Statement of the Canadian Celiac Association: The
Canadian Celiac Association is the national voice for people
who are adversely affected by gluten, and is dedicated to
improving diagnosis and quality of life.
Anti-Panic Sessions Tuscany Thrifty Foods - Public
Vision Statement: The Gluten Problem, Found, Treated, Cured
Third Saturday morning information sessions for those embarking on the GF diet. Open to anyone adversely affected by
gluten, with or without a diagnosis of celiac disease or glutensensitivity. Free to members of the CCA or those joining the
CCA. $65 Tuscany Thrifty Foods Cooking Centre. March 15, April
19 Pre-register ellen@theceliacscene.com 250-727-6275. bit.ly/
ThriftyFoodsGF
LifestyleMarkets.com GF Store Tour - Public
4th Saturdays 10:30 to noon February 22nd, March 22, April 26
GF walk & talk through the aisles of their Douglas St location.
Get the GF goods from diagnosis to diet from Ellen Bayens of
theCeliacScene.com/VictoriaCeliac.org.
Free. Public welcome. Registration not required. bit.ly/LSGFProducts
Gluten-Free-Foodies Dare to Dine
Join us as we �dare to dine’ en masse and add a new celiacfriendly restaurant to your repertoire. Stay informed by clicking
on the �Join Us’ button at meetup.com/Gluten-Free-Foodies or
RSVP to Chapter email invitations. See page 6 for recent
meetups.
Chapter Facebook Page
Be a part of the GF zeitgiest. Stay tuned to local events, new
products, restaurant reviews and the national news that influence your life. bit.ly/ChapterFacebookPage
Contribute to Your Newsletter
Send your contributions to Ellen Bayens, Editor
892 Woodhall Drive, Victoria, BC V8X 3L8
ellen@theceliacscene.com 250-727-6275
Submission Deadline Next Newsletter - March 15, 2014
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Victoria Celiac News 23:1 February/March 2014
Sandra Fraser, will also be on hand to answer questions about
the donation and our chapter funds. We have never previously
made large donations to the national office, but this is the time
to dig deep into our pockets. The need has never been greater.
This is important, not just for our chapter’s bank balance, but for
the future of the CCA as a whole.
Celiac Scene
TheCeliacScene.com provides free maps to celiac-endorsed
restaurants across Canada and celiac-friendly fast-food chains
across North America. Owned, operated and maintained by celiacs, maps are updated daily based on feedback from Chapters
of the Canadian Celiac Association. New to the diet or new to
town, find all the information you need about local restaurants,
sponsoring retailers and services catering to the gluten free.
Recommendations are a guide; not a guarantee. Always bit.ly/
AskGFQuestions before partaking. Now smart-phone friendly.
More Voting
If you have the sense that the Victoria Chapter may be taking
over the National Office, you could be right. Kathleen Shoemaker
started the stampede two years ago when she graduated from
Chapter President to Regional Director for BC, and subsequently,
became the Liaison between the Professional Advisory Board
(PAB) and the national Board of Directors (BoD). Anne Wraggett promptly followed suit, first as National’s Executive VicePresident and now, National President. Our esteemed Chapter
Treasurer and Data Base Manager, Sandra Fraser is doing triple
duty as a Member of the Finance Committee. Bravo!!
With so many of our volunteers moving up in the gluten-free
world, plenty of satisfying opportunities are available at the
Chapter level. If it looks like we are having fun organizing events
or staffing information tables - we are! What could be more
meaningful than offering support to the newly diagnosed in
areas where we have expertise - living gluten free successfully!
If you would like to connect with fellow members in ways that
have been meaningful for you, we’d love your company.
Nominations for the elected positions of President, Vice President, Secretary and Treasurer may be submitted prior to the
meeting to Cindy White at victoriaceliacs@hotmail.ca or may be
taken from the floor at the meeting.
If you’d like to vote for those stepping up to do so, then come to
the AGM and join the party!
Automatic Notification of Recalls/Allergy Alerts
To receive Canadian Food Inspection Agency automatic notification of recalls and allergy alerts, go to inspection.gc.ca, click on
English then click on E-mail Notification Services in the Quick
Link list on the right side of the window. Choose to be notified
about a specific allergy or “All Allergies.”
Itching to Read the Celiac News Online?
Are you reading the hard-copy version of this newsletter but
itching to access all of the great online information referred to
within? Enjoy the electronic, hyperlinked, colour editions two full
months before they appear on victoriaceliac.org/newsletter_archives. Just $15 per year for 6 editions! Contact Sandra Fraser at
tudorcottage@shaw.ca to arrange.
Celiac Speakers Available For Comment!
Is your class, office, interest group, church, facility, institution
interested in learning about celiac disease; gluten sensitivity,
wheat allergies and what makes them different? Would you
like to receive good information on the gluten-free diet, what it
offers, what it does not? To schedule a fun and informative presentation by a volunteer with Victoria Chapter of the Canadian
Celiac Association, please contact ellen@theceliacscene.com.
Socialize With Your CCA!
Chapter Presentations Immediately Following the AGM
askthecca@celiac.ca
facebook.com/groups/canadianceliacassociation
twitter.com/CCAceliac
Demystifying Gluten-Free Baking
Annual General Meeting
An Important Decision To Be Made
At this AGM you will be asked to vote on a very important matter.
At a November executive meeting Christine Rushforth put
forward the motion that we should take to the membership a
proposal that our chapter should make a one-time donation to
the CCA of $10,000. A motion of this importance needs membership support.
As you will have read in recent messages from our CCA President
Anne Wraggett, our organization is experiencing severe financial
difficulties. The CCA has made eloquent pleas for donations to
help resolve this crunch so that it can focus on its main purpose of helping celiacs and those negatively affected by gluten.
Individual members are making generous donations but more
significant gifts from chapters are needed. We can afford to make
a substantial donation but we need you to support this motion
and vote in favour of this significant gift.
At the AGM Anne will explain the reasons why our organization
is so hard up and what the ramifications of this shortfall have
been so far. She will answer any of your questions. Our treasurer,
If you missed them in November, read a review of
Lisa Diamond and Areli Hermanson’s presentation of The New
Gluten Free, Demystifying Gluten-Free Baking.
“As a member of the Dietetic profession and a celiac I would
like to comment on the very professional presentation given to
us byВ Areli Hermanson andВ Lisa Diamond, The new Gluten Free.В These two Registered DietitiansВ have used their knowledge and
expertise of Food Science to research all the various ingredients
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February/March 2014
Victoria Celiac News 23:1
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Victoria Celiac News 23:1 continued from page 3
that celiac have to use to bake ,’gluten free’ and then proceeded
to test and develop fail–safe recipes. Now they have developed
and written a reliable book with so much useful information,
�The New Gluten Free.’ This presentation and the sneak preview
of their upcoming cook book has delivered the best information
for celiac baking and food preparation that I have seen or heard
so far.”  ­— Sandra Lund, RD
Join for a concise reprise of that event and the opportunity to
purchase signed copies of their masterpiece, hot off the press!
Hard cover - $42 Soft cover $26 Chart @ $10 Cash, Cheque, VISA
MC. For information on the classes Lisa and Areli are conducting
at creatingoccasions.com see “The New Gluten Free’ on page
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February/March 2014
White Spot 710 Caledonia 250-382-9911
Ask for NO seasoning on yam fries
Can I Get You a Soy Latte?
Ellen Bayens
Ever ordered a soy latte? Topped up your coffee with soy milk? If
you did, did you check that the soy was gluten free? Jane Forster
did and found out the hard way that her preferred barista uses
VitaSoy with ingredients: filtered water, organic whole soybeans,
calcium carbonate, natural flavors, ORGANIC BARLEY EXTRACT,
salt, carrageenan, zinc oxide, riboflavin, vitamin a acetate,
vitamin d2, vitamin b12. Be sure to ask next time, every time!
vitasoy-usa.com/about/canada-soymilk.html
Good Old Olive Grove Restaurant
Anne Wraggett
Chair Massage by Craig Lawrence
Registered Massage Therapist, Craig Lawrence recently discovered that celiac disease runs in his family. In return for the
wonderful support and information that the Victoria Chapter has
provided, Craig has volunteered to provide chair massages at our
AGM, a chance for you to relax while making a donation to your
favourite Chapter of the CCA!
Craig Lawrence is a graduate of the West Coast College Massage Therapy program and comes highly recommended for his
therapeutic as well as relaxation massages. He works in athletic
massage,trigger point release, deep tissue mobilization, myo-facial release, basic manual lymph drainage and advanced Swedish
massage.To learn more about Craig, visit craiglawrencermt.com
or pinnhealth.ca
After a late afternoon appointment up in Royal Oak, we decided
to stop at the Olive Grove Restaurant for dinner. Always a safe
bet for celiacs, I was nevertheless startled when the hostess
immediately upon seating us asked, “Either of you celiac?” How
amazing is that?! How lucky we are!
[Editor’s note: see www.olivegrove.ca/menus/olivegrove_celiaclunchmenu.pdf]
Safe French Fries in Victoria & Area
Newsletter Submission Contest Continues!
Ellen Bayens
These locations only. Always confirm with server. If you know of
other locations serving safe fries, please contact ellen@theceliacscene.com For a printer-friendly version see bit.ly/SafeFries
Boleskine Bistro 400 Boleskine Rd 778-265-7745
Safe fries, yam fries, pakoras
Bin 4 Burger Lounge 716 Goldstream Ave 778-265-5464
Colwood location only, GF buns for burgers
Fish Store at Fisherman’s Wharf 12 Erie St 250-383-6462
Sorghum-flour battered fish,В oysters, french fries cooked in
dedicated fryer.
Irish Times Pub 1200 Government St 250-383-7775
GF beer, safe fries, can adapt other menu items
New York Fries Mayfair Mall
Dedicated fryer, fresh cut potatoes, they only season with salt
O Bistro, Oswego Hotel 500 Oswego St 250-294-7500
Dedicated fryer, excellent overall protocol
Red Robin 800 Tolmie Ave 250-386-4440
Dedicated fryer but ask for NO house seasoning, GF buns, excellent protocol
Rumrunners Pub & Restaurant 9881 Seaport Pl, Sidney 250656-5643
Rice-flour battered fish, dedicated fryer for regular fries, yam
fries not safe
Six Mile Pub 494 Old Island Hwy 250-478-3121
Dedicated fryer
Tartan Toque 1507 Pandora 778-265-9464
Fabulous onion nest, GF chicken wings by the pound
If you have a story to tell or an opinion to assert, a new recipe or
restaurant to review or a desire to go public with a gluten-free
phrase, thought, note, paragraph or an entire article, this is your
chance to beВ rewarded for your efforts! All submissions will be
entered into the draw and published as space allows. Please
send your articles to ellen@theceliacscene.com. Next Deadline:
March 15, 2014.
We are pleased to announce that Paige Owen has won the
drawВ for a $15 shopping spree at the bakery of her choice for her
submission of her Celiac Disease infographic on page 16
Wild Poppy Bistro 541 First Avenue, Ladysmith 250-924-8696
facebook.com/pages/Wild-Poppy-Bistro/281703711967723
Sillycakes Gluten-Free Bakery 2699 Dunsmuir Ave (inside Carmie’s Cafe), Cumberland 250-703-3175 sillycakes.ca Next edition’s draw prize: PamelasProducts.com shopping bag!
5
February/March 2014
Victoria Celiac News 23:1
Cozy at Home with Hanna - GF Rice Wraps
В The excitement is building in Calgary as the CCA chapter plans
to host the national conference at the end of May. If you haven’t
decided whether to attend, take a few minutes to visit the chapter’s website at calgaryceliac.ca and browse through the conference program.
Ellen Bayens
Conference Highlights
•Dr. Alessio Fasano, founder of the Center for Celiac Research
in Boston, provides the keynote address on “Celiac disease –
managing, monitoring and research”.
•Dr. David Hanley underlines the steps to enhance your bone
health and reduce the risk of developing osteoporosis.
•Dr. Joseph Murray, a pioneer in the field, will discuss the latest
discoveries for treatment and the importance of follow-up
once diagnosed.
•Shelley Case, Registered Dietitan, delivers two sessions at the
conference – a two hour workshop “Celiac disease and the
gluten-free diet” and also presents “A review of the quality and
safety of gluten-free foods and speciality products”.
•Justine Dowd discusses “Successful strategies for living”
•Kerry Bennett reveals her journey to start a gluten-free business.
After feeding the gluten, dairy, egg, soy, sugar-free and vegan of
Victoria at SanteGlutenFreeCafe.com, what does owner Hanna
Kofman crave when she gets home? Fresh and simple vegetarian
wraps. If you have not already tried these multi-purpose sandwich substitutes, dash out to the Chinese food section of your
local grocery store and pick up a frisbee-sized package of these
fragile rice disks. Prepare a rainbow of guacamole, carrots, red
peppers and chopped cilantro. If you like, cooked shrimp, chicken, shredded pork or a fried egg can be added to pump up the
protein. Carefully remove a single rice paper from the packaging
and slide into a pan-sized container of water. After a minute or
so, scoop up the gossamer circle and delicately spread out on a
plate. Fill with the veggie mix, season with salt and pepper then
swaddle up tight like your favourite newborn. Place side by side
on fresh plate with a small bowl of organic tomatoes, fresh basil,
olive oil and lemon for dipping. Anything with garlic would work
just as well. A glass of wine and some great girl talk and Hanna’s
evening, and mine, was set! If not serving right away, keep wraps
covered with damp paper towels. Have you put rice wraps to
other good uses? If so, please let us know!
All-Inclusive Registration:
Friday afternoon workshop with Shelley Case
Friday Night Stomp (Reception)
Breakfast and lunch on Saturday and Sunday
Full Program of Speakers
Admission to the Gluten-Free Market (Friday evening & all day
Saturday)
Members $225 early bird, after March 28 $275 Non-members
$300
A la Carte & Extras
Friday Workshop with Shelley Case - $35
Friday Night Stomp Reception & Trade Show $25
Saturday Trade Show - $10
Gala on Saturday Night - $60
Banff Tour Sunday Afternoon - $85
Youth Program Members $75 Non-Members - $85
Important Links:
Mail-In Registration Form: calgaryceliac.com/CCA/wp-content/
uploads/2014/01/Conference-Registration-Form.pdf
Online Registration: calgaryceliac.com/CCA/?page_id=6&ee=26
Full Schedule: calgaryceliac.com/CCA/wp-content/uploads/2014/01/Program-Draft-3-January-7-2013-2.pdf
Accommodations: calgaryceliac.com/CCA/out-of-town-accomodations
Kids Program: calgaryceliac.com/CCA/2014-conference-kidsprogram
Map to Telus Convention Centre: bit.ly/1lY9fZO
2014 National Conference Calgary
The Heart of the Rockies
Home of the Calgary Stampede
May 30, 2014 – June 1, 2014
Telus Convention Center
Gluten-Free-Foodies Dare to Dine
Glo Euro Pub
The Christmas decore made for a twinkling, interplanetary
ambience. Ideal for a romantic dinner or the cozy �girls night’ we
enjoyed on a rainy night last December. Kudos to the chef for
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Victoria Celiac News 23:1 February/March 2014
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kinnikinnick
New Soft Bagels
Plain, Blueberry or Cinnamon Raisin
Soft, Tasty and Just Plain Good For You
Now available direct from
www.kinnikinnick.com and
arriving soon in the natural
food section or bakery
section of your local retailer!
www.kinnikinnick.com
877-503-4466
В®
Victoria Celiac News 23:1 continued from page 6
delivering our varied meals to us all at once - pastas, club sandwiches, soups and salads. When I noticed that my butter chicken
with prawns was on the lukewarm side, our server whisked it
away and a brand new, piping hot meal was presented minutes
later. Excellent service! A large selection of gluten-free items are
noted on the menu and two delicious desserts were gluten free.
Helene and I shared the chocolate confection - divine. An evening that was out of this world! Keep Glo Euro Pub in mind for
that special evening. GF items marked on menu. 129 Jutland Rd
Map: bit.ly/1fufDJE
glovictoria.com info@glovictoria.com 250-385-5643
February/March 2014
NoNuttin.com
Nutracleanse.biz
PamelasProducts.com
WendelsTrueFoods.com
Gluten-Free Sightings Around Town
Betty Crocker GF Bisquick Baking Mix - ThriftyFoods.com
bettycrocker.com/recipes/product-recipes/bisquick-recipes/
bisquick-gluten-free-recipes
Sign up for new product updates: thriftyfoods.com/EN/main/
wellness/gluten-free.html
Daiya Gluten-Free, Dairy-Free Pizza - PlanetOrganic.ca
www.us.daiyafoods.com/products/dairy-free-cheese-pizza/
cheeze-lovers-pizza
Kirkland Brand GF Moisture Shampoo bit.ly/1dFuYoE
Sophie’s Kitchen GF Breaded Vegan Calimari - PlanetOrganic.
ca
sophieskitchen.net
Please share your sightings with us!
Jingle Mingle Gluten-Free Appie Delight
Twenty-eight Gluten-Free Foodies enjoyed a 17 appetizer extravaganza at Boleskine Bistro. Chef Rinku worked overtime to ensure
that there was something for everyone, including ice cold BardsBeer.com! Pronounced the most successful GF Foodie Event yet,
we look forward to visiting Boleskine Bistro again and again in
2014! Best GF fries in Victoria!
400 Boleskine Rd Map: bit.ly/1fufDJE
boleskinebistro.ca boleskinebistro@gmail.com
facebook.com/boleskinebistro
Honouring Local Hero - Joyce Schnetzler, RD
Ellen Bayens
Parent Corner
The Victoria Chapter is pleased announce that Cheryl McKinnon and Tracy Taylor have offered to act as co-facilitators of the
Parent Group. Borne out of the camaraderie that has developed
on the Victoria CCA Parents’ Facebook Group, Cheryl and Tracy
have already staged a a successful event at firedupceramics.ca.
They are keen to put the focus on “fun, that doesn’t necessarily
involve food and if it does ... it will be something the attendees
CAN eat!” It is important to Cheryl and Tracy that these be activities that involve just the celiac child and their caregiver. They
will plan �family’ events from time to time and only they what
else may be in store! If you would like more information, wish
to be added to their notification list or have a suggestion of your
own, please contact mckinnon.cheryl@gmail.com! If you would
like to join the completely private Parents’ Facebook Group for
online sharing and caring, please email ellen@theceliacscene.
com.
Special Thanks to Anti-Panic Sponsors
Shirley Bond
Each month Chapter volunteers run an information session for
new members of the CCA. Attendees include celiacs, as well
as those who have been diagnosed with gluten sensitivity or
wheat allergy. They attend with their partner, parents or others
who need to understand the transition to gluten-free life. Thank
you to Thrifty Foods and their Registered Dietitian, Jessalyn
O’Donnell for kindly donating the lovely Kitchen and Lifestyle
Centre at their Tuscany Store for these sessions. Three cheers
for the following companies for providing a warm hug to our
newest members in the form of generous donations of product!
BenjaminsBites.com
CornThins.com
GigglesFunDough.com
LibreNaturals.ca
JosephsGlutenFree.com
Many of us have had the privilege of spending time with Joyce in
her tiny office when we were first diagnosed and feeling overwhelmed. Others have met with her in hopes of a definitive diagnosis or perhaps when our recoveries did not seem to be progressing as expected. All of us have been the recipient of Joyce’s
positive attitude, compassion and caring. What you may not
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February/March 2014
continued from page 9
know is that Joyce has been invited by none other than Shelley
Case RD to join the Professional Advisory Board of the Canadian
Celiac Association. One could say that that is the equivalent of
an Oscar, in Registered Dietitian’s circles. In an effort to honour
and congratulate her, Joyce kindly agreed to answer the glutenfree version of the Proust Questionnaire below.
Where did you grow up?В Fort St. John in Northern BC
What prompted you to become an RD?В I believe the combination of family support, and having the opportunity growing up on
our family farm and having the opportunity to spend 6 months
in a Home Economics school in Switzerland.
Where did you study? University of Alberta
Where have you worked and for how long?В Worked for
Island Health for the past 25 years, primarily in outpatient nutrition services.
Have you taken additional training?В Over the past 25 years,
I have enjoyed a wide variety of continuing education opportunities. Some of my most rewarding training has come through
attending Canadian Celiac conferences, plus additional presentations by Dr. Rashid and Shelley Case.
How did your focus on gluten free come about? В When the
local celiac chapter invited me to attend Shelley Case’s presentation, at Victoria General Hospital in 2003.
What do you enjoy about counseling the GF? Seeing clients,
with celiac disease and gluten sensitivity, experiencing significant
improvements in their health.
What are the challenges in counseling the GF? Finding
increasingly effective and efficient ways to raise the awareness of
health professionals and the public re: who and how to test for
celiac disease and how to treat gluten disorders.
What do you feel is the most important piece of information that you try to share with your celiac patients? • Celiacs benefit from a lifelong strict gluten-free diet, ongoing
medical follow up and a lifelong membership in the Canadian
Celiac Association. • Give family members current evidence based recommendations on how to be tested for celiac disease.
Do you have a career highlight(s) that you would like to
share? Re: Celiac Disease - counseling patients, presenting to
fellow health professionals and attending CCA conferences.
One of my recent career highlights was being invited to serve on
the CCA PAB.
How have you shared your knowledge about the diagnosis
and the diet with your medical community? • Bimonthly classes and weekly one on one counseling for celiac
or gluten sensitive patients.
• Presentations to physicians, dietitians, dietetic interns, GI
nurses.
What changes have you noticed in your patient makeup,
work load?В Over the past 10 years I have seen a significant В increase in the В number of celiac and non celiac gluten sensitive
patients. Presently this includes more than half of my work load.
What are you looking forward to working on in your new
capacity? Increasing awareness and availability of evidencebased resources for health professionals and the public re: finding and treating celiac disease.
Victoria Celiac News 23:1
Family? Husband (my Swiss import), sons, 1 brand new daughterin-law
Hobbies? Outdoor adventures – hiking, biking, travelling, music
Obscure Sources of Gluten
Asafoetida: Papadams or crisps made from lentil, chickpea, rice,
or potato served as appetizers or sides may be seasoned with
asafoetida, a perennial plant (Ferula assafoetida) used as a spice
in Indian cuisine. Sue Newell warns that the most commonly
available form is a seasoning blend of a fine powder containing
30% asafoetida, along with rice or wheat flour and gum arabic.
The CCA’s Pocket Dictionary indicates “CHECK label for wheat.”
Be sure to ask your server to do so.
Freekeh — also called frik or farik — is made from green wheat
kernels that are toasted and then cracked. Not yet listed in
Pocket Dictionary. celiacdisease.about.com/od/Gluten-Free-Vegetarian-Vegan/f/Is-Freekeh-Gluten-free.htm
Seitan: a protein-rich food made from wheat gluten used as a
soy alternative or instead of meat in Asian, Buddhist, macrobiotic and vegetarian cuisine. Also known as wheat meat, mock
duck, gluten meat. The CCA’s Pocket Dictionary indicates “NOT
ALLOWED.”
Thank You For Your Food Bank Donations
Ellen Bayens
A team of Chapter Elves and Reindeer delivered boxes of Christmas Potluck food donations to the Mustard Seed. The staff received the delivery with open arms and assured us that the items
would be housed in a staging area set aside for celiac clients.
Within the day, we received an email from a Chapter member on
income assistance, indicating that she had visited the Mustard
Seed and that she had been, “surprised and overwhelmed to
receive GF flour, waffle mix and other things she never would
have had access to otherwise.” Your donations worked, for L.
and untold others.В Thanks also go to glutenfreecertification.ca for
the Christmas Hamper they provided the Chapter, full of newly
certified products, provided to a member in need.
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Victoria Celiac News 23:1 February/March 2014
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February/March 2014
Victoria Celiac News 23:1
Bake My Day Makes Our Day!
Bake My Day Chapter Demonstration
Sunday, March 9, 2014 2-4 pm
Hear the story of Bake My Day’s evolution to dedicated gluten
free and learn the art of creating perfect pastry from their propriety GF blend. Special feature: Alan’s Fool Proof Lemon Curd.
Samples will be served!
Where: Creating Occasions Baking School* at 776 Spruce Avenue
Located directly across from the Douglas Street Canadian Tire.
Plenty of on street parking on Sunday or in the Canadian Tire lot
at the far end, closest to Hillside Printing. Wheel chair accessible.
SPECIAL DEMO PRICING - 10% Off
•Flour mix (1kg and 2kg bags)
•Ready to Roll Pastry (1kg and 2kg blocks)
•Ready to Bake 8” frozen pie shells, with inter-leaved top crust
•Ready to Bake frozen tart shells, packs of 12
•Ready to Bake frozen, filled tarts, mix & match
•Ready to Bake frozen, filled pies
Pre-orders welcome at bakemyday@workmail.com or 1-250-7488450.
CAN’T ATTEND? Catch Bake My Day at www.VictoriaWomensShow.com March 8-9 Pearkes Arena
About Creating Occasions: Owner Lora Lonesberry, is a respected
pastry chef with over 26 years experience in the industry, 19
of them spent at the esteemed Fairmont Empress Hotel. Lora
purchased Creating Occasions in 2006, then a specialty baking
and chocolate supply store, and transformed it into the Baking
School it is today. She offers lessons for children and adults alike
and makes a comprehensive selection of baking equipment and
specialty ingredients available for purchase in her shop.
creatingoccasions.com
What is the hottest new item to come out of a gluten-free oven?
Bake My Day’s fruit pies and delectable tarts! What began as a
home-based bakery selling goods at Farmers’ Markets up and
down Vancouver Island has turned into a full-scale operation
supplying both retailers and restaurants. From their newly
constructed dedicated gluten-free facility and outlet store in
Duncan, the fruits of their labour are all ours!
PIES • Blueberry • Cherry • Assorted Fruit • Caramel Apple •
French Chocolate Silk • Pumpkin • Dairy-free options available • TARTS • Butter • Mocha • Chocolate Peanut Butter Cup • Black
Forest • Peach Crumble • Apple & Blackberry • Real Lemon
Curd • Baked Lemon with Raspberry • Caramel Apple Crumble •
Blackberry with White & Dark Chocolate • Raspberry with White
& Dark Chocolate • Christmas Mince • Dairy-free options available •
DO IT YOURSELF • Bake My Day �Ready to Roll’ Pastry in 4 and 8
shell sizes • Bake My Day Flour Mix in 1 and 2kg sizes
Outlet Store in Duncan, Tues - Fri 9-4: See Map: bit.ly/CowichanDuncan
Order Online for Delivery or Pickup: bakemyday.ca/#!orderonline/cjdh
Carrying Retailers & Coffee Shops: bakemyday.ca/#!bakeyourday/
c3yu
Market & Craft Fair Schedule: bakemyday.ca/#!markets/cwvn
* Creating Occasions Baking School is a wheat-based facility.
A thorough cleaning will take place prior to the demonstration however residual surface and airborne gluten will persist.
Samples offered for tasting will have been prepared offsite, in
Bake My Day’s dedicated facility. Celiacs should exercise caution
in consuming food items prepared on site.
12
February/March 2014
Victoria Celiac News 23:1
Perogie making, the GF way.
14
Victoria Celiac News 23:1 February/March 2014
As we chowed down on the delicious finished product, we
waxed poetic on our favourite ways to enjoy perogies: boiled
and served with yogurt to fried with generous amounts of bacon
grease, onions and sour cream. It was a trip down memory lane
and to our new perogy future. PF also makes a comprehensive
selection of cabbage rolls, sauerkraut, borscht and even kim
chee. And for good measure, they even offer a dry mix for a most
wonderful gluten-free pound cake.
PF is open Tuesday through Sunday 10-5. Shoppers are encouraged to order ahead for specific varieties and confirm that that
the factory will be open on the day of travel. On occasion, their
store front is closed while they work to meet a large order. They
look forward to meeting you! 250-701-8966 В perogyfactory@shaw.caВ perogyfactory.ca
NOTE: PF Dry Mix includes xanthum gum. The entire contents of
bag should be used when making up the recipe provided.
Perogy Making Instructions: bit.ly/1eI6Ob2
How to Cook Perogies & Cabbage Rolls: bit.ly/1fIdZoM
Perfect Perogies
Natasha and Erika of PerogyFactory.ca (PF) provided a wonderful lesson on how to prepare gluten-free perogies from start to
finish. Years of experimentation have allowed them to develop a
proven formula whereby varying combinations of two starches,
three flours, oil, and xanthum gum can be used to produce more
than 80 varieties of perogies and more!
The recipe seemed simple enough but we soon learned that the
�art’ in making perogies lies in knowing just how much water to
add during mixing, after chilling and again, when rolling out the
dough. Having produced more than 250 dozen perogies per day
for months on end, Natasha and staff have plenty of practice in
�eyeballing’ the dough so that it can eventually be tossed up into
the air just like conventional pizza dough.
Key to creating the required stretchiness is plenty of vigorous
beating and an overnight stay in the fridge. This works to enhance the binding of the xanthum gum with the water, providing
the elasticity needed to be able roll out the dough without it
�cracking’ or breaking apart. When precisely calibrated, the combination of water, xanthum gum, time and kneading creates a
dough that seems virtually indestructible ie perfect for perogies!
At various points in their demonstration, the dough was passed
around so that we could feel for ourselves when it was too wet,
too dry and then - right for rolling to just three millimeters’ thickness. PF cuts the rolled dough into 3″×3″ squares to minimize
waste. This gives the product their trademark triangular shape,
considered �traditional’ in many perogy-making cultures. That
said, PF customers have used the dough in the most unconventional ways: pizzas, calzone and even samosas!
Throughout the class and while we waited for the perogies to
boil, Natasha shared how her diagnosis with celiac disease and
her newborn son’s anaphylactic reaction to wheat changed
the direction of her business and her life. Since undertaking to
convert their business to dedicated gluten-free, both her mother
and co-owner, Jan and Natasha’s husband, Chris have also been
diagnosed with CD. We could all relate to her efforts to source
truly gluten-free ingredients along with non-GMO corn flour.
Going gluten free has sensitized Perogy Factory to the host of
additional allergies and intolerances that people struggle with.
They commit to making products that will address any dietary requirement and are rightfully proud of their success in doing so!
CCA Partners with Rai Grant Insurance
Mark Johnson, CCA National Secretary
In working to provide even more value to our membership, the
Canadian Celiac Association is pleased to announce our newlyformed partnership with Rai Grant Insurance Brokers. We have
negotiated discounted rates on Auto & Home Insurance for our
members, right across Canada. Rai Grant Insurance Brokers is
one of the largest independent insurance brokerages in Ontario.
Our partnership with them will provide you with special access
to their Group Auto & Home Insurance Program. Receive a $5.00
Tim Horton’s card when you call for a discounted no-obligation quote! Please identify yourself as a CCA member, and be
sure your membership is up-to-date. Save you up to 60% on your
Auto & Home Insurance!
Steve Moses 905-475-5800 ext. 302 1-800-561-6195
smoses@raigrantinsurance.com
raigrantinsurance.com
Sue Newell on the Hot Seat
Ellen Bayens
If you haven’t visited the Celiac Association’s Facebook page
lately, you may be missing out on the very best information
that the CCA has to offer. Case in point is the discussion thread
on www.on.fb.me/K9unQl. Page moderator and the CCA Education and Communication Consultant, Sue Newell, responded to
continued on page 17
15
February/March 2014
Victoria Celiac News 23:1
by Paige Owen, Infographic Project, Communication Design Diploma Program, North
Island College, Courtenay Campus
16
Victoria Celiac News 23:1 continued from page 15
36 questions regarding labeling regulations in a practical, easy
to understand terms and always from a Canadian, knowledgebased foundation. A summary of her responses appear below. It
is no wonder that she received 15 thank yous before the discussion ended.
I see posts every day here from people who are afraid to trust
ingredient lists. It is time to let go of that fear.
You need to check for the words “wheat”, “rye”, “barley” or
“oats”. If none of those words are on the ingredient list or in a
warning, you do not have to fret about gluten in the ingredients.
The recommendations from the CCA is that you look for flour
and cereal-based products marked as gluten-free by the
manufacturer. Part of that claim means that they must have a
way to demonstrate that claim. For non-cereal products, we
recommend using ingredient lists to make your decisions. Not
everyone will be comfortable with that approach, but for the
vast majority of people with celiac disease, it provides a life
that is not driven by the fear of hidden gluten.
Precautionary statements (may contain) are voluntary, but
major manufacturers work hard to make sure there labels
are accurate. Some include any potential allergens or gluten
contaminants in the ingredient list to avoid any confusion for
consumers.
If flavours are made with gluten (wheat germ oil or malt) they
would have to list wheat or barley on the ingredient list. If you
see flavors without one of those keywords, then the flavors
are not derived from a gluten grain. The regulations require
the common name for allergens or gluten sources be used, not
latin/scientific terms for wheat such as triticum.
These regulations apply to all products sold in Canada regulated under the Food and Drug Act. They do not apply to supplements or cosmetics. celiac.ca/index.php/about-celiac-disease/
celiac-news-articles/cosmetic-regulations.
Check out facebook.com/groups/canadianceliacassociation and
keep informed. Thank you, Sue!
February/March 2014
Disease
Phase 1/2 trial of BL-7010, for the treatment of celiac disease begins. BL-7010 effectively masks gliadin from enzymatic degradation and prevents the formation of immunogenic peptides that
trigger the immune system. BL-7010 is excreted with gliadin from
the digestive tract, preventing the absorption of gliadin into the
blood.
online.wsj.com/article/PR-CO-20131218-904340.html
Gluten Contamination of Spices
Tricia Thompson MS RD of glutenfreewatchdog.org has released
a public version of the special report on the gluten contamination of spices. tinyurl.com/l4u6hpd
Holiday Dinner Party
Lighthearted look at the challenges in knowing how to feed
today’s dinner guests youtube.com/watch?v=TX9EAavxrus by
partyriccardi.com
Smaller Than Your Phone, This Device Could Keep You
Healthy
Technology converts scientific spectrometer to a handheld
nanochip that can parse the ingredients of whatever you point
it at and beam the information to an accompanying smartphone
app. “Beam up your health!” mashable.com/2013/11/26/tellspec
Testing for Celiac Disease
Explains the tests used to screen for CD and how they relate to
one another. digestive.niddk.nih.gov/ddiseases/pubs/celiactesting/index.aspx
The Tip of the “Celiac Iceberg” in China: A Systematic Review
and Meta-Analysis
Until recently, celiac disease was considered to be rare in China.
This study aimed to estimate its true status.
plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.
pone.0081151
Note: The views and opinions expressed by third parties do not
necessarily reflect those of the Canadian Celiac Association.В Road to Diagnosis
Paige Owen was your average 20 year old free spirit, traveling
and enjoying life to the fullest after moving away from home.
However, her carefree life-style changed in ways she could not
have foreseen when she began attending Camosun College in
Victoria. She attributed the stomach pain, diarrhea and vomiting she experienced to the stress of non-stop assignments and
studying for exams. While she did visit two doctors that fall, they
failed to shed any light on the cause of her symptoms. Fast forward to Christmas and reuniting with family and it was not long
before her grandmother made the connection! You see, Paige is
the granddaughter of none other than Pat and Jack Owen, original members of the Victoria Chapter and Celiac Ambassadors
Extraordinaire. Pat urged Paige to get tested for celiac disease
and before she knew it, she received a Christmas gift that she
had not counted on - her diagnosis with celiac disease.
While the gluten-free diet was well within her reach, Paige
admits that the last two years have not been easy. The meat-free
diet she committed to since the age of nine had to be dialed
down to exclude vegetarian foods that were supplemented with
wheat. She was pressed to find the time in her busy academic
schedule to prepare meals that met her medical and ethical
continued on page 19
Online Gallery
Ellen Bayens
15 No-Bread Sandwiches
buzzfeed.com/ailbhemalone/15-mouthwatering-no-bread-sandwiches
80 Gluten-Free Slow Cooker Recipes
Lydia writes, “My slow cooker has not only become my best
friend, but it has been my saving grace, too! As a busy momma
with hungry boys to feed, I spend a LOT of time and energy planning and preparing meals. And I’ll be honest, sometimes I get fed
up with feeding people. (what momma hasn’t?) That is why I’ve
come to rely heavily on my slow cooker as of late.”
divinehealthfromtheinsideout.com/2013/12/80-gluten-free-slowcooker-recipes/
Accepting Celiac Struggles at Any Age
16 year old with CD proves that living gluten-free doesn’t have to
be a hard thing!
glutenaway.blogspot.ca/2013/11/accepting-celiac-struggles-atany-age.html
BioLineRx Enters Clinic with Novel Treatment for Celiac
17
Victoria Celiac News 23:1 continued from page 17
needs and she was sorely disappointed (ie glutened) at restaurants that assured her that they could provide her with glutenfree meals. Her greatest challenge however were the get-togethers with non-celiac friends who would commiserate that they
too were �on a gluten-free diet.’
We commend Paige for using her diagnosis, creativity and her
growing technical expertise to turn her exasperation with both
her friends and the medical community into a statement that
speaks on behalf of the celiac community at large: Celiac Disease
- It’s More Than an Intolerance. Please see her Infographic, a
project submitted to the Communication Design Diploma Program at North Island College on page 16.
Paige would like to credit her grandmother for providing her with
all the information she needed to start her new gluten-free life,
along with and plenty of delicious gluten-free baking as inspiration.
February/March 2014
TARTE COSMETICS’ website says they are formulated without
gluten. Prices are comparable to department store brands. Available in Victoria at Sephora at Mayfair Mall.
New Gluten-Free Cookbooks From 2013 – At Your
Local Library!
Shirley Bond
Didn’t get the latest cookbook for Christmas? Didn’t win the new
Everything Guide to Living Gluten-Free by Jeanine Friesen we
gave away during our last issue? Speaking of Jeanine, be sure to
check out her blog thebakingbeauties.com for her January 14th
great recipe: GF Bread Bowls. These large individual-sized buns
can be scooped out to serve soup or dip. All of her recipes are
easy and tried and true. Anyway, back to the cookbooks. Jump
onto the Victoria public library site gvpl.ca and place a hold
on some of these new GF cookbooks. If it’s been a while since
you looked at new ones, I guarantee you will be amazed at the
selection. There is a real emphasis on healthy, simple, fresh,
and, great news for us, trends like paleo, low-carb and raw have
hopped onto the GF bandwagon too. All of which means a great
selection. The more frequently these library books are in circulation, the more likely the library will continue to bring in new GF
books. Don’t be discouraged if there are other holds, many of
these have quite a few copies, just place a hold and you will be
notified when it’s ready for you to pick up at your local branch.
Try out a few and, if you like something, share it with other readers by writing about it in our newsletter. All of the following were
published in 2013 and are in our libraries now.
Tip for Chocolate Crumbs
Anne Wraggett
•163 Best Paleo Slow Cooker Recipes by Judith Finlayson (8 copies)
•Cooking with Quinoa for Dummies by Cheryl Forberg
•Gluten-Free Girl Every Day by Shauna Ahern
•The Gluten-Free Quintessential Quinoa Cookbook – Eat Great,
Lose Weight, Feel Healthy by Wendy Polisi (6 copies)
•Gather – The Art of Paleo Entertaining by Hayley Mason
•The Simply Raw Kitchen – Plant Powered, Gluten-Free and
Mostly Raw Recipes for Healthy Living by Natasha Kyssa
•The Complete Gluten-Free Whole Grains Cookbook – 125 Delicious Recipes from Amaranth to Quinoa to Wild Rice by Judith
Finlayson (5 copies)
•The South Beach Diet Gluten Solution – The Delicious, DoctorDesigned, Gluten Aware Plan for Losing Weight and Feeling
Great Fast
•Wheat Belly 30 Minute or Less Cookbook by William Davis
•The Allergy-Free Cook Bakes Cakes and Cookies-GF, dairy free,
egg free, soy free by Laurie Sadowski
•Bakeless Sweets – Pudding, Panna Cotta, Fluff, Icebox Cake and
More No-Bake Desserts by Faith Durand
•Cooking for Your Gluten-free Teen – Everyday Foods the Whole
Family Will Love by Carlyn Berghoff
•Gluten is my Bitch - Rants, Recipes and Ridiculousness for the
Gluten-Free by April Peveteaux (I know, I don’t write the titles,
but hey, it is a GVPL staff pick and there aren’t many holds and
it’s supposed to be very funny along with having 40 recipes).
•Gluten-Free Recipes for People with Diabetes by Nancy Hughes
•Great Gluten-Free Vegan Eats from Around the World – Fantascontinued on page 21
This is a little late for Christmas baking but recently I discovered
Pamela’s Simplebites Extreme Chocolate Flavoured Mini Cookies. (I found them at Market on Yates.) The “chocolate flavoured”
makes them sound very artificial, which they actually are not.
Although I’d hardly call them healthy, the chocolate at least is
cocoa powder. This 170 gram bag of small round cookies makes
a good amount of very tasty crumbs when buzzed in a food processor. Handy for many uses! I tucked the empty package away
so I’ll know what to look for next time I want chocolate crumbs!
Gluten-Free Cosmetics
Shirley Bond
For many people, avoiding gluten extends to using gluten-free
cosmetics as well as skin and body care products. Here are some
to consider.
ARBONNE is sold by reps in the same way as Epicure or Avon.
They carry a full line of cosmetics, including anti-aging, as well
as skin and body care. Prices are about the same as department
store lines. Have a look on line at their huge selection, and then
find a rep at arbonne.ca who can help you choose what works
best for you.
GABRIEL COSMETICS of Seattle has been making their own line
of certified GF and organic cosmetics since 1995 and also the
pricier ZUZU line since 2001. Both have foundation, concealer,
bronzer and face powder, as well as eye liners and colors, lip
glosses and lipsticks. Available in Victoria at Lifestyle Market on
Douglas and on-line.
19
Victoria Celiac News 23:1 continued from page 19
tic Allergy-Free Ethnic Recipes by Allyson Kramer
•Indian Inspired Gluten-Free Cooking by Alamelu Vairavan
February/March 2014
for purchase!
Hard cover - $42 Soft cover $26 Chart @ $10 Cash, cheque, VISA
MC
See page 3 for AGM details.
Classes Offered - The New Gluten Free,
Demystifying Gluten-Free
International Celiac Disease Symposium 2013
Ellen Bayens
The following is the second installment of notes taken from at a
gathering of world experts in celiac disease research and treatment in Chicago. The information is presented here in bullet
form, an indication of the speed in which the information was
delivered and received! They are offered from the perspective
of a layperson, albeit a former medical microbiology technologist, within the limits of her comprehension as a celiac. Should
you like to pour over all 30 pages of notes, I would be pleased to
email them to you. ellen@theceliacscene.com
www.cureceliacdisease.org/wp-content/uploads/2013/12/CdC_
Newsletter_1213.pdf promises that a DVD will be made available
soon. We’ll keep you posted!
Lisa Diamond and Areli Hermanson, Registered Dietitians with
Eat It Up Nutrition Counseling and Consulting reveal the howto’s of baking everything from yeast breads to pastry during
an in-depth discussion about the art, science and optimizing
the nutrient content of Gluten-Free baking. The secret traits of
grain, bean and nut/seed flours are revealed along with what
you should know about hydrophylic and protein binders, liquids,
foams, sugars, and fats. Tips, tools, techniques, and visuals will
help you demystify GF baking forever.
Seven Hour In-Depth Review
Saturday, March 15 9 am - 4:30 pm
If you wonder why you have success sometimes and failures at
others and are tired of throwing expensive ingredients in the
garbage – this class is for you.
Cost: $130.00
Resources provided: Session outline and key notes
Resources for sale: Copies of The New Gluten-Free Demystifying Gluten-Free Baking – Resource Guide will be available for
purchase.
creatingoccasions.com/events/demystifying-gluten-free-baking7-hour-in-depth-review-by-lisa-diamond-rd/ or call 250-475-2611
Terminology
AB: antibiotic
CD: Celiac disease
DM: Diabetes mellitus (Type I / insulin dependent)
DPPIV: dipeptidal peptidase IV, popular enzyme formulation with
unfounded ability to assist in the complete breakdown of gluten
proteins.
DGP: deamidated gliadin peptide, new generation of test measures presence of deamidated gliadin peptide antibodies. Sensitivity and specificity substantially better than the older gliadin
tests. However, insufficient evidence exists to support the use of
DGP over tTG or EMA tests. The tTG test is less expensive than
the DGP test and offers better diagnostic performance.
EMA: test for endomysial antibodies is highly specific for CD,
technically challenging to perform, expensive and time-consuming
ESPGHAN: European Society for Paediatric Gastroenterology
Hepatology and Nutrition
A multi-professional organization whose aim is to promote the
health of children with special attention to the gastrointestinal
tract, liver and nutritional status, through knowledge creation,
the dissemination of science based information, the promotion of best practice in the delivery of care and the provision of
high quality education for paediatric gastroenterology, hepatology and nutrition professionals in Europe and beyond set the
Interlaken ESPGHAN criteria (1979) for the diagnosis of Coeliac
Disease in Children and Adolescents www.espghan.med.up.pt/
position_papers/Guidelines_on_coeliac_disease.pdf
FGID: functional gastro-intestinal disorders or symptoms that
cannot be attributed to a a physiological cause.
FODMAPS: an acronym, derived from “Fermentable, Oligo-, Di-,
Mono-saccharides And Polyols”. FODMAPs are short chain carbohydrates (oligosaccharides), disaccharides, monosaccharides and
related alcohols that are poorly absorbed in the small intestine.
These include short chain (oligo-) saccharide polymers of fructose (fructans) and galactose (galactans), disaccharides (lactose),
monosaccharides (fructose), and sugar alcohols (polyols) such as
sorbitol, mannitol, xylitol and maltitol. The restriction of these
continued on page 23
3 Hour Overview
Thursday, March 20 Noon - 3 pm
Cost: $80.00
Whether you are looking for an overview of gluten-free baking
to see what you are getting into or to determine if you already
know it all – this class is for you.
Resources provided: Session outline and key notes
Resources for sale: Copies of The New Gluten-Free Demystifying Gluten-Free Baking – Resource Guide and the Putting it All
Together summary poster will be available for purchase.
Register online at creatingoccasions.com/events/demystifyinggluten-free-baking-3-hour-overview-with-lisa-diamond-rd/ or call
250-475-2611
Where: Creating Occasions Baking School* at 776 Spruce Avenue
Located directly across from the Douglas Street Canadian Tire.
Plenty of on street parking on Sundays or in the Canadian Tire lot
at the far end, closest to Hillside Printing. Wheel chair accessible.
creatingoccasions.com
Encore Chapter Presentation - Demystifying Gluten-Free Baking
Lisa Diamond and Areli Hermanson, Registered Dietitians with
EatitUp.ca, will be providing us with an encore presentation of
The New Gluten Free, Demystifying Gluten-Free Baking. Signed
copies of their masterpiece, hot off the press, will be available
* Creating Occasions Baking School is a wheat-based facility. A
thorough cleaning will take place prior to these classes however
residual surface and airborne gluten will persist. Samples offered for tasting will have been prepared offsite, in a dedicated
kitchen. Celiacs should exercise caution in consuming food items
prepared on site.
21
PPI_VictoriaCeliacNewsFEB_Fall2013 1/14/14 4:37 PM Page 1
Deserts Fulfilled
G L U T E N - F R E E
Bake it delicious.
Pamela’s Baking Mix Line has
13 ways to get there.
Recipes at PamelasProducts.com
Victoria Celiac News 23:1 continued from page 21
FODMAPs from the diet has been found to have a beneficial effect for sufferers of irritable bowel syndrome and other functional gastrointestinal disorders (FGID).
Gastro: gastroenteroloigst
GFD: gluten-free diet
GMO: genetically modified organism, an organism whose genetic
material has been altered
GSRS: Gastrointestinal Symptoms Rating Scale
A clinical, interview-based rating scale consisting of 15 items for
assessment of gastrointestinal symptoms in irritable bowel syndrome and peptic ulcer disease was developed in 1988 and has
become an extensively used generic questionnaire containing
36 items clustered into eight dimensions: bodily pain, general
health, mental health, physical functioning, role – emotional,
role – physical, social functioning, vitality.
Svedlund 1988 www.link.springer.com/article/10.1007%2FBF0153
5722#page
IBS: irritable bowel syndrome
HLA Typing: testing to determine genetic susceptibility for CD
ICDS: International Celiac Disease Symposium
NCGS: Non celiac gluten sensitivity
tTg: The tTg screening blood test is an enzyme-linked immunosorbent assay (ELISA) that detects the presence of anti-tissue
transglutaminase (tTG) antibodies that are associated with CD.
The performance of the tTG-IgA test may depend on the degree of intestinal damage, making the test less sensitive among
people with milder celiac disease. In addition to screening, the
tTG test may be used to assess initiation and maintenance of a
gluten-free diet.
VA: villous atrophy
February/March 2014
why the different response to gluten?
f)rate of scheduled caesarean sections: children of scheduled
caesarean section are twice as likely to develop CD becuase
they may not have been exposed to Bacteroides infantim,
thought to be beneficial to digestive health. Studying the
metabolites of the different intestinal bacteria will help us to
learn more.
5)New proposed classification of autoimmune disorders, allergy
and NCGS
6)Learning how much gluten is enough to trigger a reaction/
damage
7)Alternative integrative treatments are being developed based
on identifying at least 10 different junctures or steps in a
celiac’s response to gluten, and how they could be interrupted.
In 2005 there were no alternatives to the GFD. The discussions
at ICDS are testimony to new and exciting possibilities. See
“Gluten Mechanisms diagram” on page 24.
Dr. Stefano Guandalini Debunks Popular Celiac Myths - And
Plenty of Them!
This was a most entertaining session with plenty of laughter! It
was nice to know that even the experts are as exasperated as we
are by these misconceptions!
•Is there a protein in coffee that cross reacts with gluten antibodies that is harmful for celiacs? NO
•Can a blood test diagnose celiac disease? A diagnosis of CD
must be made on a screening blood test AND a biopsy
•Is corn harmful for patients with CD/NCGS? No, and even if
antibodies to corn exist, there is no proof they do any damage,
unlike the antibodies to gluten.
•Miley Cyrus says everybody should be on a GFD? No
•How common is NCGS? We really have not got a clue as we
have no bio markers.
•Could NCGS be a reaction to FODMAPS? Possibly
•Could FODMAPS be a reaction to another protein in wheat?
Unlikley. Celiacs who carefully follow a GFD can react to FODMAPS.
•Has a gene been linked to NCGS? No
•Can DPPIV break down gluten? Totally unjustified by the lack of
any evidence that they can in fact digest and detoxify gluten,.
It is an enzyme. It helps to digest protein in general. It has no
activity toward gluten. Our intestines have plenty of DPPIV.
•Is gluten making you fat? Italians consume 160 pounds of
bread per year yet only 6% are obese. Americans consume 80
pounds of bread per year but 35.7% are obese. (5 times that of
Italy.
•Dr. Bill Davis of Wheat Belly suggests that the GMO of wheat
has resulted in increased gluten content. The wheat grown
today is a cultivar of dwarfed wheat, selected and then
propagated for its ability to resist pests. The only GMO wheat
in the world exists in a lab in Belgium but has not been grown
anywhere commercially. Considered quite unpalatable.
•Wheat Belly says gluten binds in receptors that affect brain, increases waist size. Dr. Guandalini suggested that one could lose
26 pounds by using their credit card to purchase the book.
Alessio Fasano Presents Seven Celiac Disease Milestones
1)No one can completely digest gluten but not because grains
have changed. Wheat has not changed essentially in over 200
years. We do now know that different parts of the protein
chain affect us differently.
2)Evolving spectrum of diagnoses may allow us to avoid having
to perform biopsies in certain scenarios ie children. ESPGHANG
proposes that
a)with serology being close to 100% accurate,
b)symptomology suggestive of gluten intolerance
c)ability to test for genetic markers that rule out CD (very rare
to have CD without genetic marker but it has been found once)
d)resolution of symptoms on GFD
3)Epidemiology - CD is found everywhere around the world. If
you look for celiacs, you will find them at a rate of 1%.
4)Incidence - one is not born a celiac but the condition develops
as the result of genetic predisposition and environmental factors,. The incidence has been doubling every 15 years. What is
driving this epidemic?
a)quality or quantity of gluten?
b)breastfeeding or lack thereof
c)timing of the introduction of gluten to babies?
d)microbiome (bacterial flora in gut) number
300,000,000,000
e)genes are 99.5% same from one human being to another so
continued on page 24
23
February/March 2014
Victoria Celiac News 23:1
Gluten Mechanisms diagram
patients.
•insufficient number of samples are taken during biopsy and/or
are not being taken properly.
•more samples at biopsy increase the likelihood of a positive
diagnosis.
•most gastros take only 2 samples but should be taking at least
6 from a variety of loci.
•insufficient biopsies ordered. Of adults exhibiting classic symptoms: iron deficiency, anemia, weight loss and diarrhea, <50%
are biopsied. Non-white males with weight loss are the least
likely to be biopsied.
•which children are most likely to be tested? Those with Type I
DM, autoimmune liver disease, Down Syndrome.
• the #1 referrer of patients to gastroenterologist today are
neurologists!
continued from page 23
Dr. Joe Murray - Achieving a Proper Diagnosis
The most comprehensive, accessible presentation of the symposium. Note that Dr. Murray is speaking at the National CCA
Conference, May 30-June 1.
•it is critical that a proper diagnosis of CD be achieved. While
tTg testing can occasionally be falsely positive, it can be validated by running an EMA - must also be positive
•if CD testing is negative, patients should ask
•what tests were done?
•who interpreted the biopsy?
•ask to have the biopsy reviewed.
•Dr. Murray identified primary doctor to be at fault for an 8-11
year delays in diagnosis
•GPs are poorly educated in CD - only taught one hour of CD
and 5 hours re: lupus.
•Dr. Murray has seen hundreds of celiacs but only 5 lupus
continued on page 25
24
Victoria Celiac News 23:1 continued from page 24
How Sick Are You With CD?
•those presenting with anemia but no other reported symptoms had the most severe mucosal damage. Those presenting
with diarrhea showed the least amount of mucosal damage.
No explanation yet why some celiacs have no symptoms.
Rates of T Cell lymphomas
•increased when the trend changed to doing fewer follow up
biopsies, suggesting that the practice offered a measure of
ongoing monitoring. The use of the tTg test to monitor compliance and recovery is thought to have replaced biopsy follow
up. Biopsy is seen to be more accurate but considered burdensome on the patient and on the medical system.
Biopsies
•gastros with busier practices tend to do fewer biopsies ie don’t
spend the time on their patients
•gastros in group practices tend to do more biopsies likely
because they educate one other, perhaps not as busy, able to
spend more time with their patients
•best to do follow biopsy when health has been given time to
improve ie two to 5 years
•when doing duodenal bulb biopsy, use the 9 and 12 o’clock
position
•suggestion in keeping with new ESPGHANG protocol that biopsies be performed on symptomatic, serology positive children
after GFD to confirm recovery
•suggestion that serology positive, biopsy negative patients
have HLA typing done to determine their genetic risk
•consider NCGS when serology negative, no predisposing genes,
normal biopsy and respond to GFD
Causes of Functional Bowel Disorders (when there are symptoms but no detectable physiological cause)
• allergies
• enzyme deficiencies
• innate immune reaction • autoimmune enteritis (serious autoimmune condition)
• induction dysbiosis (disruption of normal gut bacteria after AB
use
• IBS
Interesting notes - presence of predisposing genes in
•gluten sensitive patients with negative serology, negative
biopsy reported more fatigue symptoms and also responded
better to the GFD
•gluten sensitive individuals with IBS who had predisposing
genes responded better to the GFD
•Question is whether they would eventually become positive
for CD
Properties of Wheat That May Trigger Symptoms Suggestive
of CD
•humans’ innate immune (protective) response to indigestible
components of gluten may increase motor transit (ie diarrhea)
that a) may offer a form of protection b) may be something
that celiacs lack
•there are elevated levels of fructans, oligopolysaccharides, discaccharides, monosaccharides and polyols) in wheat, rye and
barley so adopting the GFD may resolve symptoms that should
more be more appropriately attributed to those suffering from
February/March 2014
FODMAPS.
•Amylase Trypsin Inhibitors (ATI) are a naturally occurring pesticide in wheat seeds that are already implicated in asthma and
allergies. They may trigger a response similar to CD called TLR4. TLR 4 is a toll-like receptor which plays a fundamental role in
pathogen recognition and activation of innate immunity.
Interesting note:
•there are more than 250 different leukocyte (immune system)
responses to wheat but only CD triggers the T-cell lymphocytes
that contribute to its identifying autoimmune condition
FODMAPS
•may also represent a bacterial overgrowth - result or cause of
GFD / low FODMaps diet?
•if person not responding to GFD or has IBS, FODMAPS may offer some resolution.
•Dr. Fasano thought that FODMAPS are so pervasive in our diet,
to adopt it is very restrictive, and offers no other protection.
•FODMAPs diet is meant to last only 4-8 weeks and after that,
foods be reintroduced. It is not meant to be a permanent diet
but a way to identify problematic foods.
•a reaction to FODMAPS may cause functional or subjective
problems for celiacs or non-celiacs alike. Adopting a FODMAP
reduced diet is a means to identify problematic foods. FODMAPS are not implicated with triggering or mitigating CD.
Melinda Dennis, RD - Is tTg a Good Marker of Compliance to GFD?
NO - tTg test is not a perfect marker.
•60% of people with treated CD and normal tTg /EMA levels still
show evidence of mucosal damage.
•Not effective at tracking recent, occasional or low level exposure but more appropriate as a marker for average exposure to
gluten over a few months’ time, like the diabetes HC1
•If serology does not normalize on the GFD, must be investigated.
How much gluten and how long to raise tTg levels?
•Well controlled celiacs adherent to the GFD took two weeks
of consuming 5 slices of bread per day before there was rise in
tTg levels.
•It was noted that 30% of these subjects still showed evidence
of mucosal damage prior to the beginning of the trial.
How to track the health of newly diagnosed celiacs starting on
the GFD
•Annual tTg and monitoring for nutritional deficiencies, discuss
any new symptoms, take vitamin / mineral supplement to
restore levels, follow up biopsy and bone scan.
Are people with CD are Always Thin! Is the GFD is a healthy diet?
•Both NOT true.
•Obesity is increasingly seen as part of the initial presentation
of CD with 40% of people are over their ideal weight when
diagnosed.
•Study of change in BMI (body mass index) after adopting GFD:
81% gained weight Ireland, in the USA the overweight lost and
underweight gained.
•Generally, people gain weight because they are absorbing food
or are used to eating too much.
•GF diet is not inherently a better diet.
Persistence of symptoms despite GFD?
continued on page 26
25
February/March 2014
continued from page 25
•Check for gluten in medications, field contamination with
gluten of GF grains, accommodation by other household members, dining out, and even gluten in pet food.
Intolerance to sugars in diet? (FODMAPS)
•Lactose as well as other huge sugar molecules that are not
broken down in the small intestine ferment in the large intestine.
•FODMaps can be diagnosed by a hydrogen test
•adopt a low FODMAPS adopted for 4-8 weeks, then careful reintroduction one sugar category at a time with the goal being a
liberal healthy diet with symptom control.
Celiacnow.org is a new nutrition and gluten related disorders
website geared to three levels of understanding from layman to
medical.
Victoria Celiac News 23:1
•In Finland, every celiac gets a repeat celiac endoscopy as a way
to truly measure recovery. Within one year there should be
evidence of recovery.
•Does GFD improve acne vulgaris or rosacea? No. Even celiacs
on GFD who have these conditions see no signs of improvement in these conditions.
•IGA deficiency occurs in 1/700 normal population, but occurs
at a rate of 3-5% in celiacs. If a patient is IgA deficient, a positive IgG+ may still allow for a slightly elevated tTg but it may
still appear as a false negative.
•Cross reactivity food tests (RAST) are NOT RELAVENT to CD
diagnosis commonly performed by naturopaths.
•Is there an increased prevalence of people with CD and
Asthma? Cause / effect relationship has not been established.
•Has ATI content in wheat increased because of higher breeding
processes - do not know.
•Amount of gluten under a pinky nail, creates mucosal damage
•Be mindful of cumulative damage, zero is a standard we must
work towards.
•It is relevant if product in a facility that also handles wheat.
•Glutenfreewatchdog.com has looked into spices.
•not every symptom in a person with CD is gluten related
•people who have difficulty with FODMAPS only have digestive
issues - not the whole spectrum and damage that occurs with
CD
Dr. Markku Mäki - How Much Gluten is Too Much?
•Some patients feel that they are so sensitive that <20 ppm
is induces ill health for them. <20ppm coincides with testing
technology and the landmark study where biopsy-diagnosed
celiacs consumed varying amounts of gluten and then had
biopsies measuring villous height vs crypt depth, architectural
structure, inflammatory response, epithelial height, clinical
symptoms
•10 mg of gluten showed no villi degradation
•100 mg minimal damage
•500 mg abnormalities
•1000 mg injury indicative of gluten ingestion
•20ppm determined to be measurable and manageable for
manufacturers to set the bar at 20ppm which means that you
would have to eat 2.5 kg of bread per day to be exposed to 50
mg of gluten, the halfway mark to seeing damage to mucosa
Is purified wheat starch safe for celiacs? YES
•Finland, UK, Ireland, Holland have been using these products
for 40 years.
•Wheat-starch-removed flours score at <10 ppm
Is wheat-based syrup safe? YES
•and maltodextrin, wheat starch score <10ppm so are exempt
from having to mention their source.
•It would be like chasing the last molecules of wheat - even
water contains gluten.
Do clinical symptoms indicate the degree of disease. NO
•If you challenge with gluten and no symptoms, you may be
experiencing mucosal consequences.
•Found that those with severest symptoms who go gluten free
show better mucosal recovery than those with fewer symptoms.
•Returning to gluten because of lack of symptoms never a good
idea - the mucosa will always relapse and symptoms will also
return. (19 years)
Questions
•If children eat in same room with gluten eaters will be unsafe.
NO
•When combining and bailing wheat, barley and rye, breathing
a lot of grain dust • is it safe. As long as kernels are intact,it is
unlikely that endosperm would be exposed. Milling the grains
would be more hazardous, had one case in a grainary working.
Wheat allergic however, may react.
Dr. Allesio Fasano - Why 20ppm is a Good and Safe Number
•How did they arrive at this number? How much is too much?
Was it just the threshold of the test or is there a real finding?
•GFD is an intervention, not a lifestyle - if we don’t live GF, we
die
•threshold is factual, based on science
•in a slice of bread, gluten makes up 14 grams of gluten. Half of
that amount is the toxic component
•at first the 20 was set on the sensitivity of the test. but really ,
how much is too much?
•know that we can never reach zero gluten • we are surrounded
by gluten
•60 celiacs in Italy consumed 0, 10 and 50 mg of gluten per day
for three months.
•0 and 10 were clinically OK, 50mg had problems
•20 ppm set so that even when you eat large quantities (calculated at 2.5 kg of bread with content of 20 ppm) you will be OK
Would gluten traces in wheat substitutes pose a risk to CD? Are
celiacs Safe with GF Food ?
•of 290 GF products <.001-1% of celiacs might still react
•in other words, only 2.3% of celiacs of the 1300 treated at the
centre did not respond to a <20ppm diet. That group proceeded to a diet of veg & fruit
If standard is set at lower than 20 ppm, then the testing gets unreliable, 5 or 7, so there can be lawsuits, we all have to get along
at an agreed level of 20 ppm
Shelley Case • A Review of the Quality and Safety of of GF Foods
and Specialty Products
QUALITY
•of refined GF flours, only 10% were enriched, few GF cereal
and bread enriched
continued on page 27
26
Victoria Celiac News 23:1 continued from page 26
•still the same a few years later - most gluten-containing products are enriched or fortified but not so with GFD
•Canadian assessment - GF products 162% more expensive, 79%
still not enriched to the level of gluten foods, snack bars 99%
not enriched, most of us do not know the enriched status of
our foods
•many options of nutritious GF grains but most made with
white rice, tapioca starch and lag far behind gluten flours
•protein - can be found in quinoa, buckwheat and teff
•fibre - mesquite, teff, buckwheat sorghum, ground flax, new
grain �osta’
•high fibre, low carb combos are best for Type II diabetic
•Pulse flours - chickpea, yellow pea, www.pulsecanada.com
how to use these beans in your diet.
•look for higher nutritional starches • pure oats, high fibre
brown rice bread and quinoa - do score with slightly more fat
•1st choice - natural GF foods, whole grains, foods rich in iron,
calcium, vitamin D
GF BUYING TIPS
•review the ingredient list looking protein, vitamins, minerals
and less calories from sugar
•look for fortified products
SAFETY of Naturally GF Foods and Specialty Products
•oats has been the most widely studied 2008 60% > 200 ppm
•2 mg for every 100 grams of food (1oz)
•only those with the wheat free label are safe
•other seeds and flours not labelled GF were studied with R5
Elisa - Tricia Thompson found that millet, white rice and buckwheat most contaminated
GLUTEN CONTENT of Naturally GF Foods
•study Conducted by the Canadian Food Inspection Agency
•640 samples of naturally GF foods from 8 cities in 2010-12
from Canada, US and some other countries
•<10 were over 20 ppm
GLUTEN CONTENT of Foods Labelled GF
•only 1% were found to be >20 ppm
•Naturally GF flours with no GF claim - 10% found to be contaminated with gluten
•Naturally GF flours with no GF claim but with a “May contain
or co-packed in a facility that also handles wheat - 30% were
cross contaminated
GLUTEN CONTENT of Spices
•Study conducted by glutenfreewatchdog.com
•268 samples - 24% contained 5-20,000 ppm gluten
•Mace and coriander worst offenders but when you consider
how little you use in the size of the serving , the numbers are
still very low
Regular Oats
•very limited number of those sample were truly GF • just 4
•some manufacturers are not aware of contamination issues
with oats
Final Comments
•choose companies with Good Manufacturing Practices (GMP)
and that they test ingredients as well as final products
•avoid bulk bins or re-packaged flours
•products labelled GF are ideal but naturally GF items not
February/March 2014
labelled GF are not recommended
Dr. Donald Kasarda - Wheat Breeding and Gluten Content in Relation to CD
•two main types of common wheat: hard wheat (high protein)
used for bread and chinese noodles: soft wheat (low protein)
for lighter pastry and japanese noodles
•wheat genome has 30 to 90,000 genes; humans have just
25,000 so to cross reference which of the genes in wheat are
toxic to which genomes of people would be a huge undertaking
Has the rise in gluten of wheat in the last 50 years contributed to
increased rates of CD? NO
•12.8 to 18.7% gluten in first half of century
•2nd half just 14 to 19% gluten
•Does not align with increase in rates of CD
Are we eating more wheat now? NO
•1900 6/10th of loaf per day, 1970s 1/2 loaf, now 6/10th of loaf
per day.
•counter intuitive to increasing weight gain in the US
Use of added gluten in baking contributing to rise in CD? NO
•wheat flour is predominantly (75%) starch
About Vital Gluten
• glutenin and gliadin fractions remain after �washing’
•wet gluten (gliadin fraction) is soluble in alcohol and water,
viscous and elastic
•dry gluten (glutenin protein or vital gluten) is more starchy. The
drying involved may deaminate the wheat, but nothing to say
it is toxic.
•Vital gluten is added to whole wheat breads to compensate for
other properties and bagels. The total increase in vital gluten
consumption is just 1% since 1900.
Melinda Dennis • Is the GFD Enough: A Look at Nutrient Needs, Lab
Tests and Supplements
CD’s Impact on Health Depends on
•length of time you’ve had it
•extent and location of damage
•degrees of malabsorption
•medication taken
Common deficiencies:
•calcium, iron, B12, zinc, phosphorous
•unfortunately, the vitamins & minerals that celiacs are deficient in are also typiclaly low in normal diets
•adding a variety of GF grains showed increase in all of the
above blood levels
•diet is still still commonly low in calcium, vitamin B (B12 & folate), calories and fibre
•even though we can choose from all food categories but there
is a reliance on rice, corn, potato, high starch, fat and calories,
low in fibre.
•many celiacs rely more on protein and fats, food less likely to
contain gluten
•as a result, weight gain, constipation, low energy, blood sugar
irregular, less than optimal nutrition, bloating, gas is common
on GFD
Recommendations: visit a dietitian, space out meals and snacks,
eat a same times every day, fresh water, avoid stressor foods,
continued on page 28
27
February/March 2014
continued from page 27
alcohol, coffee, artificial additives, prioritize business, fun and
exercise, take appropriate supplements
Recommended a sex specific multi mineral/vitamin supplement
Iron
•if you have fatigue, poor appetite, frequently feeling overwhelmed, pallor, heavy periods, decreased immunity the
number one reason is low iron
•iron testing can be discontinued once ferritin level returns to
normal but if low iron persists after one year, must supplement
Calcium
•low bone density affects 70% of celiacs, improvement mostly
seen in first year
•wait to take bone density after 1st year to set new baseline
level
•calcium citrate better than calcium carbonate, never more
than 5-600 mg at a time
•9-18 yrs take 1300 mg, 19-50 1000 mg/day >50 1200mg per
day
•gave an example of a varied diet that easily achieved 1200 mg
in calcium in a day
•iron supplements reduces the uptake of calcium
•calcium supplements best taken at bedtime
Vitamin D
•extremely important, helps body absorb calcium, anti-cancer
properties, reduces inflammation, affects hormones and immune function
•Check VitD at diagnosis and again at 6 months
•aim for 25OHD level of 30-40 or above
•MUST supplement to get to 1500-2000 per day
•D3 is the form our bodies accept best and form found in
supplements
Zinc
•maintains hair, skin and nails, fights infection, mitigates diarrhea, take a GF multi with zinc as zinc depletes copper, always
take with with food
B vitamins
•cracks in in the corners of mouth, muscle weakness sign of lack
of Vitamin B
Precautions
•Take care not to have too much Iron, A, E, K, D, calcium
•Do take folates and B6, spaced throughout the day
•standard lab work every year should includes CBC , 25(OH)D,
B12, folate, iron, ferritin, zinc and a tTg or DGP
•Watch for barley in supplements, rye is rarely used
Victoria Celiac News 23:1
•Bifidobacteria x 4 are the most common genera of probiotic
bacteria, with B. infantis thought to offer a protective effect, a
sort of super strain
•it is thought that we are exposed to B. infantis in the birth
canal, explaining the correlation between planned cesareans
and a doubling of CD in pre-disposed patients (when all other
variables are controlled)
•celiacs were asked to complete a GSRS questionnaire to accurately describe abdominal distention
•probiotic use was reported to have reduced abdominal distention
•no change in permeability, reduction in concentration of tTg,
decreased release of anti-inflammatory cytokine or an increase
of innate immunity was observed in celiacs consuming probiotics
CONCLUSION:
•although probiotics may alleviate symptoms, their use did not
change the overall makeup of the gut flora
•bacteria may have a role in pathogenesis (mechanism that
causes the disease), may improve clinical expression of the
disease
•more study is required
Dr. John Zone • Dermatologist with Specialty in DH
The alpha-gliadin protein is an enormous molecule that can not
be absorbed through the skin but can be digested via lipstick or
any other product that makes its way to the mouth.
•No studies have been undertaken to test whether topical exposure to gluten affects DH sufferers or whether a scratch with
gluten can trigger DH.
•Scratch tests can reveal an urticarial reaction, completely separate from DH.
•Never seen DH episode induced by applying gluten directly to
the skin.
Lesson on Skin Structure
Think of the outer layer of the skin as saran wrap and below that,
a protective percutaneous layer and even the base of the follicle
is surrounded by skin. Like a ball through a chain link fence, a
break in the skin might allow entrance through the skin but the
consequences to the CD pathway remain unknown. It should
be noted however that mucous membranes (our nasal passage,
lungs) do not have the protective �saran wrap layer’ so if you
breathe things in, you are essentially eating them.
Dermatitis herpetiformis (DH)
•lymphocytic response in the gut, compounds created are deposited in the skin
•a positive skin biopsy confirms a diagnosis of CD. A duodenal
biopsy is not required.
•patients with DH can present with the full range of intestinal
symptoms or none at all.
•all improve on the GFD but skin condition can take years to
resolve.
•not adopting a GFD will result in all of the other non-compliant
conditions of CD.
•Dapsone is used to treat patients symptomatically (reduce itching) but has side effects. It is meant for short term. Any side
effects are not as severe as not adopting a GF diet.
continued on page 29
Dr Julio Bai - Are We Ready to Use Probiotics for All Celiac Patients?
•we have a complex community of microbes in our gut - 99%
are bacteria, 1000+ species
•our natural community of bacteria are affected by age, diet, AB
•dysbiosis or microbial imbalance in the duodenum of has been
documented in celiacs based on fecal metabolites
•growing evidence that gut microbiota might play a role in the
pathogenesis of CD
•modulating the makeup gut microbes might represent a
potential strategy for detoxification, improvement of intestinal
permeability and thereby, mitigate the immune response.
28
Victoria Celiac News 23:1 continued from page 28
Eczema, apthous stomatitis and alopecia.
•lymphocytic response in CD/DH can be likened to bees, creating an inflammatory frenzy in skin when they circulate.
•inflammatory skin diseases tend to get worse with bad CD and
can improve on the GFD, but not resolve completely.
•estimated only 5% non-celiacs with above conditions may also
improve on the GFD.
February/March 2014
lem with FODMAPS?
•FODMAPS is another area of interest, but apart from resolving subjective symptoms there are no diseases related to the
inability to digest FODMAPS
•GFD can improve response to FODMAPS but a positive response to a low FODMAP diet does not improve CD
•suspicion that the bacterial population in the gut might offer
an innate immunity to the toxic factors in wheat
•there may be a chicken and egg relationship between bacteria
and development of CD; the change in the gut bacteria and the
severity of the disease
Dr. Elena Verdu - Wheat Toxicity Outside Celiac Disease
who should avoid gluten?
•theory that ATI in wheat, a non-gluten protein that provides
seeds with anti-insecticidal properties, can aggravate people
who have other non-CD autoimmune disorders.
•90% of the population can digest wheat; the 10% who cannot
are CD or the new category of NCGS.
•symptoms of abdominal pain will improve after two weeks on
GFD
•the challenge is teasing apart those with a chronic disease
from those with NCGS
•schizophrenics on a GF diet have been shown to improve their
socialization behaviours
•there is a suspicion that most people with NCGS have IBS but
self-identify as gluten sensitive
•Definition of NCGS: symptoms of CD, negative serology, resolve
on GFD
•all the rest fall into a catchall of IBS
Dr MN Marsh - Classification System for CD
This Symposium marked 21st anniversary of Marsh Classification
System (1992)
0 - normal
1 - pre-infiltrative
2 - infiltrative
3 - hyperplastic
4 - flat destructive
•very important to get a biopsy of the top view of flat mosaic
with holes (crypt hyperplasia), concentric circles around hole,
and the build-up around the holes
•cross section of the villi is measured width x depth
•poor quality biopsies can hamper a proper diagnosis
•pathologists are looking for intracellular lymphocytic infiltration
•Further study:
•how people progress through the various Marsh stages as
they develop or recover from the disease, how genes might
affect that progression
•how genes might affect the progression through the various
Marsh stages as patients develop or recover from the disease
Ben Lebwohl - What Happens When your GFD is Less Than Scrupulous?
•celiacs adopt GFD to reduce or eliminate symptoms, improve
quality of life, reduce complications or risk of fracture
•never too old to go gluten free, always beneficial no matter
age of diagnosis
•those diagnosed when elderly more likely to develop lymphoma
•when people have a second biopsy, they tend to adhere better
to the diet.
Studies indicate
•bone density improved after GFD
•CD more common in people with DM
•low B12 can be due to other causes besides CD
•hypo/hyperthyroidism more common in CD
Villous Atrophy (ie mucosal damage)
•persistent VA found in 30-60%, even 70% of celiacs
•percentage varies tremendously, depending on when they are
biopsied (one year, two year)
•doctors are not doing nearly as many repeat biopsies now but
if they did, they might see more evidence of VA and could then
track the consequences
Questions
•does mucosal recovery predict overall mortality? YES
•does follow up biopsy offer a stratified predictive value for
lymphoma, proliferative malignancy, fractures if covariates excluded ie age (younger), gender (F), calendar period, duration
of CD at time of followup Biopsy, education attainment. YES
Dr. John Hart Histopathologist - Common Pitfalls in Evaluating
Small Bowel Biopsies
Diseases that also cause intraepithelial lymphocytosis (IEL):
•crypt hyperplasia and dense laminant proprio-infiltrate
•autoimmune enterocolitis
•viral enteritis
•malabsorption diseases (sprue)
•use of antibiotics
•medications (Olmesartan)
•intestinal parasite ie Giardia
•Common Variable Immune Deficiency Syndrome (CVID) ie lack
of plasma,
Sonia Kupfer - Role of Genetic Testing
•of interest is chromosome 6, HLA class of genes, DQ2 and DQ8
•homozygous DQ2 (alpha & beta are most at risk and have more
severe conditions)
•heterozygous DQ2/DQ is next at risk
•those with DQ8 alone least likely to develop CD
•hetero-demi - if alpha, likelihood of CD is extremely low; if beta
CD is still possible
•30% of population have a combination of these genes but only
5% develop CD
•Latin American, African American may have genes but seem to
have other protective factors
continued on page 30
Dr. Evan Newnham - What if Gluten Sensitivity is Instead a Prob-
29
February/March 2014
continued from page 29
When to use genetic testing?
•unclear serology
•family member with CD
•at-risk groups
Interesting facts
•if both parents are celiacs, and if one parent is heterozygous, it
is still possible for child to be negative for both genes
•gluten challenge does not cause permanent damage to mucosa
•studies that involve a gluten challenge are regularly approved
was sited as evidence that requesting a gluten challenge is
ethical
Victoria Celiac News 23:1
Commercially available depeptideaseIV (DPP-IV)
•Gluten Guard, -Ease, -Defense, -Disease, -Digest, Cutter
•Does not specifically target gluten, has no activity toward
gluten
•Is available in abundance in the gut • our intestines have
plenty of DPP•IV
•Totally unjustified by the lack of any evidence that they can in
fact digest and detoxify gluten. It is an enzyme that helps to
digest protein in general. It has no activity toward gluten.
Conclusion
•oral enzymes can be used for gluten degradation cannot replace GF diet
•commercial preps are not effective
Daniel Adelman - Therapies Alternate to GFD
Dr. Luisa Mearin - Can Celiac Disease Be Prevented?
•are being monitored for but not yet confirmed safe
•not yet approved for treatment and only available in clinical
trial
Reasons for pursuing study:
•almost half of CD patient continue to have symptoms
•80% CD patients still show inflammation two to five years after
starting GFD
•found that people on GFD for 14 years, their villi are better but
still not normal
•intra-epithelial lymphocytes (IEL) can still be twice normal
amount
•there seems to be a correlation between how long person
may have had the disease, how ling they have been consuming gluten before being diagnosed and an increase in T-Cell
malignancies.
•there is a suggestion that the GFD may not achievable or still
inadequate
Developed a CD diary to measure subjective experience:
•90% of participants experience symptoms one day per week.
•By correcting for over-reporting, 20% of subjects said they
have symptoms that compromise their quality of life.
•introducing gluten in a better way in the food of young babies
might be helpful
•CD is a multi-factoral disease: genetics, immunology, T-cell,
cytokines, antibodies, environment, breastfeeding, infections
and other unknown factors
•Sweden study where gluten was introduced only after 6
months created a landmark spike in CD rates
•now recommend introducing in small amounts at 4 months
while breastfeeding
•2005 study of 1560 HLA-DQ2/DQ8 diabetics noticed they
have a significantly higher risk of CD if not introduced during
window 4 to 6 while breastfeeding (study involved 17 partners
in 10 countries)
•18,000 12 year old children from Sweden:
•9000 children screened born during epidemic, incidence of
CD 3%, highest ever
•9000 children born after epidemic, when introduced properly, incidence of CD 2%, still higher than 1%, but it did offer
some preventive value
•what about the future?
Treatments in Celiac Disease Today and Tomorrow - Round Table
Alvine Pharmaceutical ALV003 - protease enzymes as an adjunct to
GFD
•All therapies are but adjuncts to the GFD
•All adverse events are being recorded as studies proceed
•cloned and then expressed, the enzymes target glutamine
and proline residues (problematic for celiacs) and break them
down so that they do not bind with tTg antibodies
•highly efficient, able to degrade large volumes of gluten both
in vitro and in vivo
•hypothesize use would be a daily admin of enzyme in well
controlled CD
TEST: people were given 2g gluten per day with one meal with
enzyme, another group without enzyme. After 6 weeks, serology tested and villous depth measured on biopsy
RESULTS: the enzymes reduced the gluten-induced gastrointestinal symptoms and showed less damage to the mucosal lining
than the control group.
CONCLUSION: targeted degradation of proteins may improve
speed of mucosal recovery in celiacs
www.CeliactionStudy.com is the next phase of the study, 500
participants
Frits Koning - Enzyme Therapy
•Aspergillus niger creates an enzyme (AN PEP) that supports
gluten degradation
•A. niger is grown on yeast culture and the enzyme is then
extracted
•breaks down the peptide chains to individual proteins
•tTg antibodies do not attach to the protein and hence, no
lymphocytic response.
In Vitro Studies
•Small amounts of gluten can be broken down in 5 minutes
provided there is a low stomach ph (acid)
•Action sped up if taken with carbonized drink (Coke), slower if
with milk or other proteins
In Vivo Studies
•11 volunteers were given a liquid meal of gluten with oral enzyme, some without enzyme
•enzyme lowered the amount of undigested gluten.
•see future as a strategy to cope with inadvertent ingestion of
small amounts of gluten.
30
All the world’s problems
can be solved over a Bard’s.
Although on occasion
it takes two Bard’s.
Bard’s Beer is America’s first gluten-free sorghum
beer and the only beer brewed with 100% malted
sorghum. One taste and all is right with the world.
Discuss it over a Bard’s.
Please enjoy responsibly.
•• 2014 Tours and Support FREE • No RSVPs Required ••
•• Anti Panic Session Must RSVP • ellen@theceliacscene.com 250.727.6275 ••
Planet Organic Store Tours
Second Saturdays 10am
Lifestyle Markets Support
Second Tuesdays 6:30pm
Anti-Panic Sessions
Third Saturdays 10am
Lifestyle Markets Store Tours
4th Saturdays 10:30am
Saturday, January 11, 14
Tuesday, January 14, 14
Saturday, January 18, 14
Saturday, January 25, 14
Saturday, February 8, 14
Tuesday, February 11, 14
Saturday, February 15, 14
Saturday, February 22, 14
Saturday, March 8, 2014
Tuesday, March 11, 14
Saturday, March 15, 14
Saturday, March 22, 14
Saturday, April 12, 14
Tuesday, April 8, 14
Saturday, April 19, 14
Saturday, April 26, 14
Saturday, May 10, 14
Tuesday, May 13, 14
Saturday, May 17, 14
Saturday, May 24, 14
Saturday, June 14, 14
Tuesday, June 10, 14
Saturday, June 21, 14
Saturday, June 28, 14
Saturday, July 12, 14
Tuesday, July 8, 14
Saturday, July 19, 14
Saturday, July 26, 14
Saturday, August 9, 14
No Meeting in August
No Class in August
No Tour in August
Saturday, September 13, 14
Tuesday, September 9, 14
Saturday, September 20, 14
Saturday, September 27, 14
Saturday, October 11, 14
Tuesday, October 14, 14
Saturday, October 18, 14
Saturday, October 25, 14
Saturday, November 8, 14
Changed from November 11th
to November 18th
Saturday, November 15, 14
Saturday, November 22, 14
Saturday, December 13, 14
Tuesday, December 9, 14
No Class in December
No Tour in December
Gluten Free Product
oFFerinGs
(all natural)
shakes, cleanse, Bars & More
вњ“ Meal replacements, Supplements & Snacks
вњ“ Cleansing
вњ“ Healthy Skin & Cells
вњ“ Heart Health
вњ“ Athletic Performance & Energy
вњ“ Youthful Aging, Telomeres, Brain & Sleep Support
Systems
Cathy LeBlanc
HappyCells@shaw.ca
250-715-5620
Victoria Chapter
Canadian Celiac Association
PO Box 5457 Stn B
Victoria BC V8R 6S4
40732530

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