Celiac Digest

In this Issue

• Cut costs and enjoy the CSA Conference in Tucson
• New face and new place for Aug. 25th meeting
• Our May Food Faire a super success
• Chapter 15 Notes
• Conference goodies and benefits
• Gluten-free tourist finds aromatic destination & enjoys pig-out in Kinnikinnick bakery store
• Medical news to use
• In Memoriam Bea Faye Kitter 1920 - 2007
• New location for Aug. 25th meeting!
• CONFERENCE DEADLINES!
• Mark your calendar
• CSA Conference Schedule
• CSA Conference Registration Form

Cut costs and enjoy the CSA Conference in Tucson

SACS members are encouraged to register and attend at least parts of the Sept. 28-30 Celiac Sprue Association/ USA 30th National Conference taking place for the first time in Tucson. It will convene at the Westward Look Resort on the evening of Sept. 27th.

Although the event is jointly sponsored by CSA and the Tucson Hospitals Medical Education Program/ Tucson Medical Center Healthcare, and September is off-season for Tucson resorts, the full registration fee for CSA members starts at $400.

SACS president, Cheryl Wilson, offered several solutions that will allow many more local Celiacs to benefit from the conference. She describes the event as a "once-in-a-lifetime-in- Tucson educational opportunity".

First, Cheryl urges us to register before Aug. 31 because the price will go up 30 percent for those who do not meet the deadline. She also noted that food prices in Tucson are generally higher than in other regions and all meals are included for full registration.

Other suggestions include:

• Join national CSA to drop the fee from $585 to $400. The membership fee is $33. Registration covers your meals for three days – all GF breakfast, lunch and dinner on Friday and Saturday, and breakfast on Sunday. Even if you are not staying at the Westward Look, you may eat the GF breakfast(s).
• Sign up for one or two days or perhaps a meal. Your registration for a day includes the lunch meal only for the day you select. Or, just buy a pass for the Exhibitor Hall that’s good for all three days, for as many times as you like. You can taste new GF foods and meet many other Celiacs.
• Register to attend only the Thursday evening “Fiesta” for $50 and, yes, get a preview of the Exhibition Hall as all vendors are required to be there then and ready to serve.
• If you cannot afford any of it, sign up to be a volunteer. Contact Cheryl Wilson (520-298-5551 or so.az.Celiacsupport@earthlink.net) if you can help out for an entire day, or the entire time. You will get to mingle with the Conference guests, possibly get to hear at least one lecture (maybe more), and will be given a pass to the Exhibitor Hall if you volunteer for an entire day or more. You will not be able to get the GF meals free (you would have to register and pay for those in advance) but you can get free samples at the Exhibitor’s Hall.

"However you do it, we would like everyone in SACS to be involved somehow in the Conference,” Cheryl said. “You really don’t know how helpful it is until you’ve attended one, especially to the newly-diagnosed. But, there are always updates in research on CD, and the newest products in the Exhibition Hall."

New face and new place for Aug. 25th meeting

This year’s fall general meeting is being held Saturday, August 25th , 9 to noon, at the Pima Community College District Office Campus 4905 E Broadway, Bldg C (located just east of Swan, directly behind TGI Friday’s. – Please see map p. 7 or our website).

Our featured speaker is Dr. Shelli Hanks who will address the problem of patient/doctor communication or, How Can I Get My Doctor to Listen to Me?

Dr. Hanks will share some of her own Celiac journey, along with why she wanted to join the SACS boards (Executive and Medical Advisory) as well as become involved in reviving the Tucson R.O.C.K. group. Dr. Hanks is passionate about educating other medical professionals about Celiac disease and has made it her personal mission to invite as many of her colleagues as possible to CSA’s National Conference. She will give us some tips on communicating with your doctor(s).

We do not normally hold summer meetings for our support group, but due to the CSA National Conference taking place on the weekend we have traditionally held our first meeting of the new fiscal year, we opted to have a meeting in late August. We have taken in so many new members over the last few months that the board believes we needed to offer a general meeting to facilitate the transition for so many of these new members.

For many of our members, this will be the last opportunity to sign up for the National Conference, and we want to make sure that you all know how to become involved in this once-in-alifetime opportunity for those of us in Southern Arizona. Please mark your calendars for August 25th and plan to attend. Let’s see if we can help all these new members feel welcomed!

As always, if you would like to bring your favorite gluten-free snack (which we all appreciate), remember to bring the label, the box, or an ingredient list to accommodate those with multiple food restrictions.

Our May Food Faire a super success

(click to enlarge)

SACS May 19th Food Faire at Christ Community Church was a huge success. Thanks to the efforts of members Connie Beuerlein and Pat Hirsch who publicized the event, over 250 people attended, making it the largest general meeting in our chapter’s history.

Not only did we sign up 17 new members, we also made almost $2,000 from donations, the silent auction and the raffle. SACS is raising money to help members cover part of the cost of attending the September CSA Conference at Westward Look Resort.

Lynn Rae Ries, spoke to the group and also provided lots and lots of delicious GF product from her bakery in Phoenix. We would not have been able to sponsor this event without generous product donations from the following vendors: Arico, Bob's Red Mill, Bumble Bars, Chebe, Enjoy Life, Freeda Vitamins, Heartland's Finest, Kinnikinnick, Mary's Gone Crackers, Natural Feast, New Life, Organic Bistro, Pamela's, Pure- Fit, and Wild Oats.

Chapter 15 Notes

Member Sande Smith had an article published in the summer issue of Living Without magazine. She wrote about her difficulties in getting an accurate diagnosis and how she coped with making the necessary dietary changes.

Mareblu Naturals nut snacks are GF, Kosher, vegan and dairy free. They are made by the creators of Mrs. Mays Naturals, but the Mareblus are made in the USA from local ingredients instead of being imported from China. The pistachio variety is available at Costco. See www.mare blunaturals.com for all flavors.

Newman’s Lite Italian dressing served at McDonald’s contains barley malt extract. You may want to read the ingredients of any dressings from Newman’s. Some are GF.

CSA/USA: 877-272-4272, 9 a.m. to 4 p.m. Central Time. Their URL is: www.csaCeliacs.org.

Membership changes? Notify us via the website or call 742-4813.

Conference goodies and benefits

What do you get when you go to a CSA Conference? Well, if you live in Tucson, you get a chance to go at the absolutely lowest price ever as you won’t have to pay transportation or hotel costs. Included with registration is:

ADVISORY: Please be aware that, although the ingredients may be gluten free, the owner told us that there are no dedicated prep or cooking surfaces in Lovin’ Spoonfuls (including a toaster). We recommend that no celiac have his or her GF bread toasted (make sure you advise your server), and remind the server that whomever is preparing your food needs to change plastic gloves before touching your food, We also recommend that you do not order peanut butter & jelly sandwiches, since they use the same PB & J jars for all customers (so there may be gluten crumbs in them). If you consider yourself a ‘sensitive’ celiac, please be advised that there may be cross-contamination issues that could cause a gluten reaction.

• GF breakfast, lunch and dinner on Friday and Saturday, and breakfast on Sunday, even if you are not staying at the Westward Look. Yes, eating out and never once worrying about safety - priceless. Plus, it’s the Westward Look, so you know it’s going to be good.
• You’ll have an opportunity to talk to leading Celiac doctors, researchers and dieticians and ask them questions. The conferences are never so crowded that you can’t approach the experts personally.
• Many of the talks will be taped and you’ll receive either a collection of audio CDs or cassette tapes mailed to you after the Conference.
• You can sample and shop from the leading producers of GF food in North America.
• The Fiesta! GF Buffet will consist of four ‘stations’ of Southwest food and a walk around the Westward Look facilities for each part of the evening. You will get to sample ‘anniversary’ cakes created by LynnRae Ries (GF Creations Bakery, Phoenix), Aaron Flores (CSA Executive Chef), and by Lee Tobin (GF Team Leader for Whole Foods Market Gluten-Free Bakehouse)
• All presentations are age appropriate with a KidsZone for children 7 to 11, a Teen Scene for those 12- 17 and the Young Adult group covering the ages from 18-23. Each group will have specific activities designed to help that age range cope with the challenge of staying GF in a world filled with gluten.

There is something for everyone at a CSA Conference. Check out the CSA Conference brochure enclosed with this newsletter for more detailed information and the registration form.

Gluten-free tourist finds aromatic destination & enjoys pig-out in Kinnikinnick bakery store

When I got to Edmonton, (Alberta, Canada), a planned detour to visit Kinnikinnick on a recent cross country road trip, you might say that I followed my gluten-free nose. The aroma in the parking lot was wonderful and the closer I drew, the stronger it became. I anticipated being enveloped by the fragrance inside the facility – the inner sanctum – Kinnikinnick itself. This is the bakery facility that got me over the “You-are-a-Celiac” diagnosis and way beyond the “No more baked-goods for you,” command.

Usually, for health and safety reasons, Kinnikinnick does not allow any tours of its facilities, but, after many whining and wheedling emails on my part, they agreed, with typical Canadian hospitality and friendliness, to let me and my camera into GF Nirvana.

Finally there I was, clad in the mandatory long white coat and hairnet, with camera in hand and following Kim Reiniger, the marketing manager, into the wonderful smelling bakery. Fortunately, everyone “on the floor” was wearing the same outfit as I, so I didn’t mind it at all. First of all, it smelled even more wonderful inside than out! And, it was huge. Their main oven is 150 feet long and bakes the bread in three distinct ‘zones’ at three different temperatures. This same oven can be set to bake English muffins or other products, too. Racks and racks of cooling product made me want to grab some butter and a little jam, but I kept my hands to myself and observed from a distance, ever mindful of their sanitary protocols.

Kinnikinnick takes (gluten) contamination issues very seriously. I was allowed to observe their testing facility, but only through a window. Workers cannot even bring a sandwich or cookie from home into the plant. If they want any bakery product for their lunch, they can get it free from the staff room refrigerator. And, since Canadian food standards are more rigorous than those of the US’s FDA, the food is safe as well as delicious.

Developing new product lines is expensive and time consuming. When they want to test a batch of waffle batter, for example, they have to make over 200 pounds of it in order to utilize the commercial waffle machine. They are still working on getting it perfect.

After touring the K2 plant, I followed Kim’s car to their other facility a few miles away, donned another white coat and hair net and saw where and how pizza crusts and donuts are born. These items have to be made by hand, but they are trying to develop machines to automate the process. I also shopped with wild abandon at their retail bakery store, wishing we had one like it in Tucson. The pastry chef there told me that she is not a Celiac and keeps working on recipes to make them taste and feel just like the ones she would traditionally make with wheat flour.

Kinnikinnick was founded in 1991 by Ted Wolfs Von Selzum in a 500 square feet. facility. Von Selzum sold his baked goods at a farmer’s market where they were snapped up by self-diagnosed Celiac and attorney, Lynne Bigam.

Soon, Von Selzum wanted to either expand his operations or retire, and he approached Lynne and her husband Jerry about buying the bakery. With Jerry Bigam’s background in marketing food ingredients and Lynne’s experience as a lawyer, it seemed a perfect fit. The Bigams’ son, Jay, also joined the company as executive vicepresident.

Since the Canadian population could supply only 200,000 customers, Jay Bigam’s idea to market GF foods via the Internet to the US market meant they soon had more orders than they could fill. So, the original 500 square foot bakery grew to 30,000 square feet. Recently, they expanded further with the addition of a former cookie factory, which is over 2.5 acres in size and has been modified to process GF baked goods. Seventy percent of all the company’s production is shipped to the US.

Kinnikinnick is still family owned and operated but now has 175 workers, a retail store, a bakery that handles hand-made goods like donuts and pizza dough and direct mail shipping (24 hour delivery to any point in the US for $10 on all orders under $200). The K2 bakery is immense, heavily automated and concentrates on bulk shipments to distributors and retailers.

How big is ‘big’? Tractor trailers full of bagged tapioca and rice flour unload at the multiple loading docks at the largest bakery. Up to 15,000 cases of baked goods and mixes will go out to retail distributors every week. The freezer at the facility is ‘drive in’ in terms of using fork trucks to handle the stacked merchandise. From 400 to 700 packages of product will go to customers in the US by direct UPS delivery each week. Demand is such that they could run double shifts if they could find the workers in Edmonton’s booming economy.

Will Kinnikinnick become a tourist destination for Celiacs? Well, I enjoyed myself immensely, and stranger things have happened. Until then, remember — you can have a little slice of GF heaven for yourself in just 24 hours by ordering directly from their website at www.Kinnikinnick.com.

(By the way, Cheryl, I talked to their pastry chef and found the answer to your burning question. They sell the donut holes; they don’t throw them away!)

Medical news to use

MAYBE A VACCINE FOR CELIAC DISEASE?

Dr. Robert Anderson, an Australian gastroenterologist who works with the Autoimmunity and Transplantation Division in the Royal Melbourne Hospital, is developing what he hopes is a vaccine for Celiac disease. He has been researching and developing this treatment since 1998.

The vaccine is scheduled to go to human trials in 2008 and is being marketed and tested by a company called Nexpep — http://www.nexpep.com.au/nex/. The science behind their vaccine design is described as:

Celiac disease is associated with one of two immune recognition genes, HLA-DQ2 and HLA-DQ8. Dr Anderson and his team have studied the gluten peptides that activate T cells in HLA-DQ2 and HLA-DQ8 patients. By using comprehensive molecular mapping, Dr Anderson and his team defined the dominant T cell epitopes using blood from patients with HLA-DQ2 or HLA-DQ8 Celiac disease after gluten exposure. The potential for a peptide-based vaccine to treat or prevent Celiac disease became apparent when Dr Anderson’s team showed that the gluten T cell epitopes are highly conserved between individuals sharing the same HLA-DQ genotype.

The vaccine will include the gluten peptides most commonly recognized by T cells in people with Celiac disease. This general approach has been highly successful in non-human models of immune diseases and in people with cat-sensitive asthma. It is also under active investigation in Type 1 diabetes, multiple sclerosis and rheumatoid arthritis.

Dr. Anderson’s approach finding ways to cure/manage Celiac disease is different than that of Dr. Alessio Fasano’s quest to find a pill that blocks gluten absorption, but maybe it will be the answer for us.

A KINDER COLONOSCOPY PREP

If one of the miseries of the colonoscopy prep is the migraine induced by low blood sugar, you may want to consider what Dr. Stephen Holland, a Naperville, Illinois gastroenterologist suggested when posting to the Celiac Listserv:

One option for nutritional support during a bowel prep where a clear liquid diet is needed is to take a liquid feeding during the prep. The liquid feeding must be a no fiber type. This approach has been validated in a study in a group of elderly patients where Ensure was used during the prep, where it was shown that the preps were excellent despite the addition of the Ensure. I have an occasional patient with diabetes, patients who are frail, or patients who get migraines when they don't eat where this approach has been quite helpful. You will need to check with your doctor during the prep (to determine) if this is an option.

Long-time SACS member Bea Faye Kitter passed away April 30, 2007 at Devon Gables nursing home where she had been living after a period of failing health.

Along with Pat Ewing, Bea was one of the original members of SACS and, when her health permitted, never missed a Roundtable meeting.

We shall miss her.

New location for Aug. 25th meeting!

DEADLINES!

• Aug. 27th — Westward Look Resort contract block rate ends. (Remember, you do not have to stay at the resort in order to attend the Conference)
• Aug. 31st — Registration discount ends (You can phone your registration in and use a credit card to pay for it.)
• Sept.1st — Fees increase by 30% (call 877.272.4272 to register after this date)

(See insert this newsletter for CSA Conference registration materials.)

Mark your calendar

• August 10 - Lunch Bunch noon - Blue Fin ( NW corner Ina & Oracle)
• August 10 - Board Meeting, 1:30, Ward Six City Hall at 3202 E. 1st St.
• August 22 - Roundtable, 1 p.m. Ward Six City Hall at 3202 E. 1st St.
• Sept. 15 & 18 - Health Fair, Wild Oats Marketplace, Oracle/Ina Road - emphasis on Celiac disease
• September 26 - Roundtable, 1 p.m. Ward Six City Hall at 3202 E. 1st St.
• September 28-30 - CSA Annual Conference, Westward Look Resort, Ina/ Oracle.
• October 24 - Roundtable, 1 p.m. Ward Six City Hall at 3202 E. 1st St.

Roundtable is suspended for November and December

CSA Conference Schedule

For your convenience the CSA Conference schedule from the CSA web site in included below. Use the scroll bar on the right of the schedule to view it all. To view the conference schedule in the full window go to http://www.csaceliacs.org/Conferences/2007ConferenceSchedule.php

CSA Conference Registration Form

To get a printable copy of the registration form, go to the CSA web site at http://www.csaceliacs.org/Conferences/documents/ConferenceRegistrationForm.pdf. Remember that after August 30th registration fees increase 30% and after that date you must register by phone (877 272-4272).