Celiac Digest

A publication of the Southern Arizona Celiac Support Group (SACS)
online at WWW.SouthernArizonaCeliacSupport.org
vol 4, issue 5
May 2006

DISCLAIMER: This publication is intended as a general information resource for gluten-intolerant individuals. It is NOT intended for use in diagnosis, treatment, or any other medical application. Please consult your physician for professional medical advice and treatment.

In this Issue (also available in PDF format, 472KB)

GF pizzas fill Celiacs and coffers

One hundred and thirty -pizzacraving Celiacs and friends took part April 1 in SACS’s first ever (GF) Pizza Dinner Fundraiser. SACS cleared about $3,500 that will help support educational efforts here and also will allow us to contribute to the (GF) pot at the Center for Celiac Research, School of Medicine, University of Maryland.

The GF Pizza Dinner was supported generously by Picazzo’s Gourmet Pizza & Salads of Tempe and Scottsdale. Picazzo’s provided some pizza free and some at sharply discounted rates. The event was held in St. Mark’s Presbyterian Church hall at 3809 E. Third St., Tucson.

According to Cheryl Wilson, secretary and president-elect, “We had an excellent showing…, and although we did not make as much money as we have in past years with the Celiac Walk, it was respectable.

“We had lots of positive feedback that people liked the pizza fundraiser a lot more—some probably because it was indoors, others because it was not too early (or too late), and it involved a favorite food – pizza.”

Dennis Dennis Daniel and Mr 'B' Daniel, general manager of Picazzo’s, told Cheryl that he sold out all the eat-in pizzas, take-home special- order pizzas, and the pizza dough he brought. Mr. Daniel told the GF-pizza diners that Picazzo’s developed their GF pizza dough and GF facilities about 18 months ago and expected to sell about 25 to 30 GF pizzas a week but now is selling more than 400 a week. He said he had been unaware of the demand for GF dough but since launching the GF line he has had people come up to him crying for joy and thanking him.

Mr. Daniel also noted that Picazzo’s sells GF beer.

Dinner entertainment featured the Caffarella Sisters Trio, who sang. The trio includes Cheryl and her sisters, Linda Canterbury, and Joy Fields, all Celiacs and all SACS members.

The event was about more than just GF pizza. Many members, friends, and sponsors contributed effort, time and money. According to Hetty Pardee, treasurer, who worked the entrance during the dinner, the breakdown is as follows.

SACS made $1,300 on the dinner because Mr. Daniel and Larry Schneider (CSA’s Region 6 Memberat- Large) donated 20 pizzas. Dough sales profited SACS by $880. Donations of money, including $610 collected by Marilyn Ringer, totaled $1,233. Raffle ticket sales netted $261, and the Silent Auction brought in $926.

Merchants, professional sponsors and members contributed valuable items or services for the Raffle and Silent Auction. Some include:
Wild Oats-Gift Basket-value $125+ GF Salad Dressings for the dinner
Starbucks-1 lb. coffee-$10 value
Sprouts-$20 Gift card
Bashas-$25 Gift Certificate
Sun City Vistoso Golf Club-Golf for four-$228 value
Fry's-$20 Gift Certificate
Albertson's-$25 Gift Certificate
All About Running & Walking-$50 Gift Certificate
Progolf-mug & $10 Gift Certificate- $25 value
Interior Expressions-Candle holder- $350 value
Sande Smith-Veggies for dinner salad
Rocking Horse Ranch (Cheryl Wilson)- Riding Lessons
… and many, many more donations that we don’t have space to list.

Food Faire and elections May 20

Where else can you indulge in brownies, cookies, pretzels, breads, or snack bars and not have to question whether they are gluten-free or not? It’s that time of year again- SACS’s Annual Food Fair. Mark your calendars for Saturday, May 20th from 9a.m.-12p.m. in the Rincon Room in the Alamo Building of Tucson Medical Center. Many vendors including Kinnikinnick, Chebe, Tinkyadas, Ener-G, Pamela’s and more have generously donated samples of their products for your gluten-free stomach’s enjoyment.

Elections will take place during this meeting, also. The board is still welcoming nominees and will be taking them the day of the meeting as well. Consider getting involved as an officer or board member-at-large. To find out more about roles of board positions, download the SACS’s constitution from our website or contact election committee chair, Mary Louise Catura at 298-1038.

While all of the gluten-free samples are free, do remember to bring your checkbook to enter in the raffle and to pay your chapter dues. Dues are $12 and are good from July 1, 2006 to June 30, 2007. Members not paid up (or grant dues assistance) by September will not be on the 2006-2007 “Celiac Digest” mailing roster. So make sure to sign up! Resident immediate family members receive membership by your dues. Each paid member household can elect to receive the Celiac Digest via email, regular email or both. Make your choice on the enclosed membership form.

SACS reaches a large group at the Fair

Cheryl Wilson decided SACS should go to the Pima County Fair this year and almost single-handedly made it happen. She conceived of the idea, sold it to the board, made all the arrangements, designed the booth, selected the materials, coordinated the volunteers and envisioned the 7 ˝ foot vertical banner that caught so many eyes.

While the banner was designed by Shirley Curtis, Cheryl was the one who found the printing company in Rhode Island and alternately cajoled and bullied Shirley into finishing it and sending off the CD in a two-day computer marathon to beat the deadline. It was well worth the effort as it drew lots of people to our booth.

President Georgina Rubal said that SACS will definitely be at the Pima County Fair again next year. With the experience gained from this year’s effort, next year will be even better as we will have a much better idea of how many of what handouts we’ll need instead of printing things off on our inkjets at night.

Plan on volunteering next year. It’s fun and tremendously satisfying to help other Celiacs, both the diagnosed and the ones still suffering.

Chapter 15 Notes

Subway GF offerings are not truly GF. Cross-contamination in salads make them unacceptable as, even though your server may have fresh gloves, the OTHER servers are handling bread and then dipping their (contaminated) gloved hands in the lettuce, green peppers, onions, etc. to put on the sandwiches. Stick with McDonald’s salads as they are made off site, individually packaged and not contaminated with bread crumbs.
(source: personal experience)

Carnation Instant Breakfast will now include barley as an ingredient. This is due to the new labeling law as the formulation has not changed. The old packages will still have the inaccurate labeling.

There is no correlation between the severity of the response to gluten ingestion and the damage done to the small intestine. A mild reaction could mean big damage and vice versa.

In tests done in Europe, people on a GF, Oat Free diet underwent biopsies, and were then fed a diet including Pure "Gluten Free" oats for some time. In subsequent biopsies, they found that around 1 in 5 (20%) suffered damage to their villi, which was reversed when oats was removed from their diets.

On the basis of this, the Australian Coeliac Society will be changing the phrase "and possibly oats" in all of their publications, to words along the lines that 1 in 5 celiacs suffer damage from pure, unadulterated oats.

Email delivery of the Celiac Digest will resume with the next issue as members need a hard copy of the SACS renewal form. Remember, you can elect to pay $50 for a 5-year membership.

CSA/USA: 877-272-4272, 8 a.m. to 3 p.m. Central Time. Their URL is: www.csaCeliacs.org

Change of address/phone number: Change of email: Notify us via the website or call 742-4813

Subscription discounts are available if at least 10 new readers sign up for Living Without magazine. Contact Mary Louise Catura at 298-1038.

Health news to use

CD to liver disease to cancer?

Roy Jamron, posting on the CELIAC@ LISTSERV.ICORS.ORG hypothesizes that Celiac Disease, by interfering with liver functions, may increase the chances of cancers and fibromyalgia linked to fat soluble toxic substances as such chemicals accumulate in the body’s fatty tissues.

He states, “Liver abnormalities have been found in a high percentage of celiacs when first diagnosed, around 42% according to some studies. Gluten toxicity and increased intestinal permeability have both been suspected as a cause of liver abnormalities…. not only does damage to the intestine in response to gluten often result in bacterial overgrowth, but damage to the liver by gluten may also contribute to bacterial overgrowth and mucosal alterations.

He suggests that these fat soluble poisons accumulating in the fatty tissue surrounding joints may cause the intense pain of fibromyalgia as well as joint and muscle pain. “The inability of the liver to remove xenobiotic [a chemical compound (as a drug, pesticide, or carcinogen) that is foreign to a living organism ] chemicals may also increase the risk of breast and other cancers.”

Other health writers have noted that the combined political and economic clout of the drug and chemical industries have prevented an unbiased, scientific assessment of the role of these chemicals in the amazing increase in the cancer rates in first world populations.

The bottom line: if you had tests showing elevated liver enzymes when first diagnosed, be vigilant and get regular mammograms.

The following links provide more detailed information.
Environmental Influences on Women's Health How to Avoid Endocrine Disrupting Compounds by Marianne Marchese, ND
Xenoestrogens and Breast Cancer: Nowhere to Run By Luita D. Spangler
Uncertainties for Endocrine Disrupters: Our View on Progress George P. Daston, Jon C. Cook and Robert J. Kavlock
Statement from the Work Session on Environmental Endocrine-Disrupting Chemicals: Neural, Endocrine and Behavioral Effects
Our Stolen Future:Widespread Pollutants with Endocrine-disrupting Effects
Endocrine Disruptor Knowledge Base

CD and ADD HD link?

Ron Hoggan, co-author of Dangerous Grains suggests that there may be a link between CD and the diagnosis of ADD or ADHD based on the similarities of EEG readings in children newly diagnosed with Celiac Disease. While he cites Polish, German and American studies to back his position, he also stresses that he is not a medical doctor nor trained in interpreting EEG readings.

Hoggan says, “I would urge (those with ADD) to be very careful to avoid contamination in (their) diets, and I would ask you to consider some alternatives to stimulant therapy … (a report) showed that vitamin B-6 supplementation was as beneficial to a group of children with attention deficits, as Ritalin was...”

You can contact Hoggan at Ron_Hoggan@shaw.ca for more complete information. He will write back.

Library a source of Celiac information

SACS librarian, Mary Massarotti, reminds us that the Tucson/Pima Public Library has nine books on Celiac related issues in the system. Seven of these are cookbooks and two are informational books (Going Against the Grain and A Hidden Epidemic).

Books can be reserved by going online at www.tppl.org and having the reserved book sent to your nearest library branch. No computer? Call the library info line at 791-4010 to have the book sent to your neighborhood library.

Mark your calendar

May 12 - Board Meeting, Bookman’s Grant & Campbell, after Lunch Bunch
May 12 - GF Lunch Bunch, Mimi’s near the Tucson Mall, noon. RSVP @ 888-2935
May 20 – Food Faire/Elections 9-12 , TMC, Alamo Building, Rincon Room
May 24 - Roundtable, 1 p.m. Ward Six City Hall at 3202 E. 1st St..
June 9 - GF Lunch Bunch, noon, place TBA
June 28 - Roundtable, 1 p.m. Ward Six City Hall at 3202 E. 1st St..
July 14 - GF Lunch Bunch, noon, place TBA
July 26 - Roundtable, 1 p.m. Ward Six City Hall at 3202 E. 1st St..
August 11 - GF Lunch Bunch, noon, place TBA
August 23 - Roundtable, 1 p.m. Ward Six City Hall at 3202 E. 1st St..


A ‘Fair’ perspective

"Thank SACSG Conty Fair banner you, thank you, thank you for being here..."
"This is the BEST night I have had in a LONG time..."
"I finally feel hope..."
"I can't tell you what it means to have someone to talk to..."
"You've given me so much hope that this will get better, that I can do it..."
"I think I was meant to be here tonight to talk to you--I just decided to walk in this building, and now I have hope..."
"...Oh GOOD...we DO have a support group in this town..."
"...I was just diagnosed..."
"...So, I can't have spelt? No WONDER I don't feel good..."
"...Ooooohhhhhh...so cross contamination is why I keep getting sicker and sicker when I eat out...I didn't think of that"
"...so, I can't even have WHOLE wheat?"
"What about oats?"
"Why doesn't my doctor get it?"
"My doctor tells me my symptoms are in my head"
"Why don't doctors think of testing for this?"
"This information states that if you don't treat your disease you could die...is that really true?"

These are only SOME of the comments I heard while dialoguing with people at the Fair last week and this week. I've had reports from so many of our volunteers that are quite similar, but every volunteer I've spoken to has indicated the same thing: it was a very-much needed and appreciated outreach to our community.

I feel very vindicated about all the effort it took to undertake the Pima County Fair, but after speaking to so many newlydiagnosed, nearly-diagnosed, or want-to-be diagnosed, I know that we were a vital part of helping people come to a better understanding of our disease, and how it really WILL get better as they stay on their diet. A lot of people just needed encouragement to keep on "keepin' on" in their journey to remain glutenfree. Some were interested in reading our diagnosis stories, and then decided that they would be tested.

We handed out water bottles and celiac buttons to those who were genuinely interested, Bob's Red Mill catalogs to anyone who wanted them, gave out ALL of our blood test info sheets, and had to reprint more...as we also did the invitations for our Food Fair on May 20— I would be very surprised if some people from the Fair did NOT show up!

Even if we only get a few new members for our own group, I believe that we should continue to pursue this important community outreach in years to come. Not only does it fit in nicely with our SACS mission statement ("to educate"), but where else can we get such exposure to so many in our own community, in such a short time?

Thank you, thank you, thank you to everyone who helped out!!!

A BIG thanks to all you wonderful people that said YES when I called and asked you to help out at the Fair:
Colleen Beaman
Sue Beveridge
Brenda Bryson
Mary Louise Catura
Evelyn Cohen
Shirley Curtis
Amy & Lindsey Cushman- Dickerson
Jeannine Faidley
Joy Fields
Bessie & Laurel Ford
Barbara & Wayne Hyde
Jack Cohen-Joppa
Karen Keating
Laurie Kriedler
Bruce & Ann Kurth
Kathleen Joy
Tania Malven
Jennifer Michaels
Virginia Morgan
Hetty & Stan Pardee
Marilyn Ringer
Georgina Rubal
Viola & Ted Rubal
Nancy Schuller
Ed Simmendinger
Diane Sheehey
Gene Spesard
Erika Williams

Cooking class a great experience

Oh boy – a day off work and nothing but fun ahead! These were my thoughts as my sister, Cheryl, picked me up to head to Tubac and the home of fellow SACS member, Sande Smith. We were about to embark upon a memorable cooking (and eating) experience with five-star chef, Fernando Espinosa.

As we drove up the dirt road to Sande’s ranch home, we were struck by the beauty of the area. “Blue Sky Ranch” overlooks the Tubac Valley with its lush green trees and beautiful mountain views. The home was built in the early 1980s by Arthur Manuel, co-owner of Leow’s Theaters. Sande and her husband bought the home two years ago and have just moved in after completing an extensive remodeling project.

As Cheryl and I got out of the van, the thought occurred to both of us that we might like to skip the class and stay outdoors to enjoy the scenery, but we finally managed to pull ourselves away from the view and go inside. We were cheerfully greeted by Sande’s daughter, Ashley, and her friend, Kristen, both students at the University of Arizona. After signing in, Ashley and Kristen ushered us into the spacious kitchen and offered us tea, coffee, and lemon and cucumber waters (a previous cooking class gave instructions on how to make these waters). The cucumber water was particularly refreshing.

We soon met our cooking partners for the day – a delightful mix of men and women from various backgrounds. Canada, Germany, and Oregon were represented, as well as a recent San Francisco retiree. Surprisingly, Sande, Cheryl, and I were the only Celiacs present at this gluten free cooking class, but the others were as interested in learning how to make a “great grill” as we were, and the word “gluten-free” was obviously not an issue with them.

We enjoyed a friendly period of chat, and soon our chef, Fernando, breezed in the door laden with an array of fresh vegetables, fruits, and other good things we would be using during our experience. My first thought was, “Are we really going to eat all that?” (And yes, we did!). He immediately put on a pot of pinto beans to cook, since they needed to simmer for a couple of hours before they would become tender. Then he handed each of us a menu complete with recipes. Included were flank steak marinated in a dry barbeque rub (absolutely yummy!), dauphinoise potatoes (to die for), frijoles charres with beef chorizo, chipotle cornbread, and fresh peach and yogurt pie with marzipan crust. It all sounded so good I was ready to skip the cooking and go straight to the eating.

Our chef proved to be both personable and patient as he taught us how to chop, mince, and grill amidst an unending string of questions: How long do you bake the cornbread? (Until the sides come away from the pan) Do you follow recipes exactly? (No, they are just a guideline – use your creativity and have fun!) How do you smoke the meat? (You’ll have to attend your own class to learn that, or this article will be too long). Fernando amiably told us stories about his work, his family, and the cut on his finger while trimming the zest of several oranges to miniscule proportions with a butcher knife. He then gave us the opportunity to try our hand at chopping onions and tomatoes, but somehow, ours didn’t look as good as his. I noticed that while I chopped one onion, Fernando managed to chop two onions, several tomatoes, and some chili peppers. He had everything sautéing neatly in the frying pan when I finally scraped my uneven onion bits in with his.

Other fellow “cooks” peeled fresh peaches, mixed ground almonds and powdered sugar into a paste with their hands, rubbed barbeque seasoning into the meat, and learned how to cut seeds out of tomatoes. Meanwhile, Sande, Ashley, and Kristen worked like troopers to clean dirty mixing bowls, prepare pans, and measure spices.

In due season (or should I say seasonings?) the meat was “marked” on the grill then finished in the oven, the potatoes baked to perfection and the cornbread to a golden brown, and the peach pie looking good enough to dive into. We all sat down and allowed Sande and her faithful crew to serve us generous portions. The friendly chatter stopped as we took our first mouth-watering bites – and then murmurs of “Mmmm…” broke out across the room. Needless to say, we all ate too much, but how often do we have the privilege of eating a fivestar gluten-free meal?

If you are looking for a fun and delicious way to spend a day, I highly recommend signing up for one of Sande’s classes. Thanks Sande, Ashley, Kristen, and Fernando”!

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