online at WWW.SouthernArizonaCeliacSupport.org
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
- February 12 POTLUCK Features “Mini” Shop-a-Thon
- Gastro Doc Sanner Surprises SACS Audience
- WANTED: Creative Desktop Publisher
- The Value of Volunteers
- Chapeter 15 Notes
- SACS Volunteer Needs How Can YOU help?
- GLUTEN ATAXIA A Neurological Condition Associated with CD
- SACS in the Community
- SACS Gluten Free Cooking Classes A BIG HIT!
- GF Cooking
- In Memoriam
- Save the Date SACS Annual Gluten-Free Food Faire
- Mark Your Calendar
February 12 POTLUCK Features “Mini” Shop-a-Thon
SACS annual potluck will be held this year on Saturday, Feb. 12th at The Journey Church, 4700 N. Swan Rd, (just across the street from the three radio towers). See map on our website. There will be a barrier with balloons and a sign to help mark the entry drive to the church. We always look forward to this general meeting, so please try your best to come.
You will get to share wonderful gluten free food (all GF) with wonderful people. Children and non-member guests are always welcome. The business part of the meeting includes a report on SACS= activities as well as an outline of volunteer opportunities.
Copies of Melissa Diane Smith‘s newest book, Gluten Free Throughout the Year and Dr. Ford's book, The Gluten Syndrome and a video DVD of his presentation will all be available for sale, along with Recognizing Celiac Disesase. All profits benefit SACS‘ educational programs and public outreaches.
Due to the low turnout at our December 4th Shop-a-thon, we have invited a few of our favorite the vendors back for another chance to share their goods with our group. Please note that these vendors are donating a portion of their sales to support our ever growing Gluten Free Food Faire. Vendor items include gift baskets, hand-made cards, gourmet GF food, Tupperware and framed artwork.
Probably the best opportunity is that you get to bring your favorite GF dish or dessert to share with us. Don=t forget to bring your recipe (or an ingredient list), so that those with multiple food intolerances can make wise choices. Coffee, tea and water will be provided.
Come early and plan to stay late! NOTE: If you cannot--for any reason--bring a dish to the potluck, please come anyway as we always have plenty of food!
Eating Starts at 11:00 am!
Gastro Doc Sanner Surprises SACS Audience
Tucson Gastroenterologist, Dr Charles "Chuck" Sanner only lectured for about 30 minutes, but answered questions for at least that long (or longer). He started his lecture on "Trends in Celiac Disease" by relating that he has had an interest in CD since he started his medical training a few decades ago and internship in Pediatrics. At that time, CD was viewed as a childhood disease that was debilitating. When he transitioned to adult medicine it was stuck in his mind—he could not believe that it was limited to only children. He states that trends now are actually going in the other direction.
Dr Sanner went on to explain why some grains affect humans as they do. He showed an interesting grain chart outlining the connection between proline and glutamine levels and toxicity. The top three toxic grains are wheat, rye & barley and are the only proteins known to not be digested by the human gut.
Dr Sanner placed an emphasis on the importance of genetics in celiac research today. One somewhat 'surprising' statistic he brought up was the point that 1-5% of celiacs do NOT have either DQ2 or DQ8. He said that we (even doctors) must keep an open mind and cannot say someone does not have CD just because they don‘t have the genes! He said there are many genes now known to be associated with an increased risk of developing CD. He explained that HLA-DQ2 & DQ8 are highly associated with risk of CD because they control the antigen-binding proteins in the gut. The non-HLA genes suspected (but not confirmed) is now up to 13 that are also associated with increased risk of developing Type-1 Diabetes, Multiple Sclerosis, etc. Later in the lecture, Dr Sanner added that the DQ2 marker can be refined to help us identify those more at risk, especially in family studies. The research shows that those with two copies of the DQ2 gene are 5x more likely to develop CD than those with only one copy!
Dr Sanner‘s opinion that "EVERYONE who has gluten sensitivity has CD" elicited an audible response from the listeners. He was careful to state that it was his opinion only, but that it was based on research he had read, along with observations from his own practice. He then used a rather "busy" slide (as he called it) to explain why he believes that to be true. He detailed the processes by which antibodies are activated while explaining the whole "leaky gut" mechanism involving zonulin. Some of you may have heard Dr Alessio Fasano speak on this very subject back when he guest lectured here in Tucson.
Dr Sanner then moved to the subject of the prevalence of CD pointing out that those statistics have changed quite a bit even over the last few years. The incidence in Western Europe varies from 1:60 (Ireland) to 1:100, with the USA coming in at as little as 1:10, depending on the genetic pool you are researching.
Dr Sanner related that in studies where the siblings of celiac children were subjected to biopsies, of those who were DQ2+tTg positive AND totally asymptomatic, fully half of them will have villous atrophy.
The next portion of the lecture consisted of several charts outlining more changing trends in presentation of CD. It was interesting to note that in both children and adults, the "classic" (old) symptoms of diarrhea, gas/bloating and weight loss were the main symptoms doctors would look for back then. The only difference between the two was that adults would often present with iron-deficient anemia.
NEWER PRESENTATION OF CD SYMPTOMS IN CHILDREN Short stature, Delayed puberty, Type 1 Diabetes, Dental enamel defects, Neurological disorders (seizures, ataxia), Chronic joint pain, Depression or Fatigue, Iron-deficient anemia.
NEWER PRESENTATION OF CD SYMPTOMS IN ADULTS: IBS, osteoporosis, oral lesions (oral ulcers, glossitis, cheilosis), arthralgia/fibromyalgia, chronic fatigue syndrome, depression, infertility, spontaneous abortions, neurological disorders (neuropathy, ataxia), skins lesions (dermatitis herpetiformis, follicular keratitis-Vit A deficiency), abnormal liver enzymes (10% of people with CD will have sustained elevated liver enzymes, although there is more data for children than adults).
"Patient history is as important as serology!", Dr Sanner stated emphatically, then reported that he has changed the Antibody Tests that he uses in his own practice. After giving an in-depth explanation of the different serological tests available to patients, he asked the question, "is it really that they have early CD that cannot yet be proven by biopsy?"
One of the most impactful statements Dr Sanner put forth was his opinion on the "gold standard" in diagnosing CD. Traditionally, a positive small-bowel biopsy (proving villous atrophy) has been (and still is considered to be) the "gold standard" around the world. However, Dr Sanner said that, in his opinion, a patient showing improvement of symptoms on a GF diet is the gold standard for his practice. He was careful in issuing caveats stating that this is only his opinion, but judging by the reaction of the audience, it seemed it was a welcome approach. He no longer biopsies all of his patients being evaluated for CD. He believes that if there is strong enough evidence of CD with patient history along with serological pathology, they may not need a biopsy. He generally suggests that these patients begin a GF lifestyle. When he "offers" patients the option of doing the GF diet, he asks for an "absolute commitment of three months."
Overall, Dr Sanner made some remarkable statements during his lecture and gave SACS listeners many new things to chew on. We so appreciate his dedication to researching all the trends in CD and for providing such compelling evidence.
Once again we are blessed, as a support group, to have such a high caliber of local physicians willing to spend some of their precious time sharing knowledge with us. We offer our sincerest gratitude to Dr Sanner.
WANTED: Creative Desktop Publisher
Need an outlet for your creativity? Consider joining our team as Newsletter Editor of The Celiac Digest. Requirements include having a working knowledge of MS Publisher and being willing to attend meetings occasionally. Please contact Cheryl Wilson at 520-298-5551 or via Email at firstname.lastname@example.org.
The Value of Volunteers
By Kim Pebley
About two years ago, I was diagnosed with CD. Dazed and confused, I came upon the SACS website and just knew that I could obtain information through this group. There seemed to be a wealth of information at my finger tips. Who put it there?
At my first food faire, I marveled at the sea of people and smiling volunteers that seemed eager to help point me in the right direction or talk to me about their own experience. Who organized this amazing event?
When I attended General Meetings, Potlucks and other events, it began to sink in...volunteers are needed to make all things possible!
Although the Executive Board makes plans come to life throughout the year, without the support of the membership and VOLUNTEERS stepping forward to show their support, none of this would be possible.
Thank you to those who have supported SACS by volunteering. Please know that we appreciate your continued support! For those who are holding back, please come forward and experience the joy of volunteering. SACS wants to give you even more in the years to come.
We would like to hear from you as to what you would like to see happening with the group‘s outreaches and events.
Do you have a special skill or talent (or are willing to learn)? Please see the list in the next column then contact us!
Chapeter 15 Notes
- Membership changes? Notify us via the website or call 577-6930 (Corene Johnson).
- CSA/USA: 877-272-4272 9 a.m. to 4 p.m. Central Time. Go to www.csaCeliacs.org.
- SACS GF Mentor Program You can sign up online if you would like a mentor to help you navigate the sometimes confusing world of CD/DH or the GF lifestyle. We will try to match you with someone that lives on your side of town. You can also sign up to BE a mentor (diagnosed 1+yr). Go to our website and click on "Gluten-Free Mentor Program."
SACS Volunteer Needs How Can YOU help?
In addition to the Newsletter Editor mentioned on Page 2, we are also in need of the following:
- Cel-Kids Coordinator. This person would assist us in the planning/execution of events for GF children, as well as answer questions that come to us via the web or phone calls. On-the-job training is provided!
- Silent Auction Coordinator for the 2011 GFFF. Again, on-the-job training will be provided by the 2010 Coordinator, who will also assist in coordinating the 2011 event (which will be held at the Holiday Inn Palo Verde on April 30, 2011).
- On going needs include clean up and/or set up for SACS general meetings or special events, as well as people to help assemble and mail the newsletter. You can volunteer to help for a specific date or any num-ber of events. If you would like to know more or want to sign up right now, please contact our Volunteer Coordinator, Celeste Harvey, at 7216-6767 or email@example.com.
GLUTEN ATAXIA A Neurological Condition Associated with Celiac Disease & Non-Celiac Gluten Sensitivity
By Dr. Lindsey Pearson, NMD
As we learn more about celiac disease (CD) and non-celiac gluten allergies and/or sensitivities we become aware of more comorbid conditions associated with them. One of the more recently recognized comorbid conditions is gluten ataxia. First described in 1990, gluten ataxia is neurologic condition that is predominantly characterized by the loss of balance and coordination.
The medical term ataxia means a lack of coordination of muscle movements. Gluten ataxia is caused by antigliadin antibodies attacking and damaging Purkinje nerve fibers in part of the brain called the cerebellum. The cerebellum controls balance, motor control, and cognitive functions such as language and attention. When the essential nerve fibers of the cerebellum are damaged people may experience difficulty walking, balancing, talking, finding the correct words in speech, motor coordination of the arms and legs, and cognitive decline such as mental fogginess and mood changes. The damage is irreversible.
The treatment for gluten ataxia is a strict gluten-free diet – just like in celiac disease, gluten sensitivity, and gluten allergies. Adherence to a gluten free diet will decrease the level of circulating antigliadin antibodies and thus halt the progression of gluten ataxia – but not reverse it. A gluten-free diet will prevent further damage. It may take almost two years for all circulating antibodies to reach a level that is considered within normal range and thus halting the neurological destruction. If gluten is reintroduced into the diet, anti-gliadin antibodies will rise and further damage may occur. Since gluten ataxia is caused by anti-gliadin antibodies it may be found in celiac and non-celiac gluten sensitive patients . Approximately 80% of celiac patients have anti-gliadin antibodies. IgG and IgA antigliadin antibody levels may be measured by a simple blood test and are often a part of comprehensive celiac screening panels along with tTG IgA antibodies (with total serum IgA levels), EMA IgA, anti-gliadin IgA and IgG antibodies, and deaminated gliadin peptide (DGP) antibodies. Since celiac and non-celiac gluten sensitivity have many of the same signs and symptoms, comprehensive screening panels should be utilized by physicians when either is suspected. In addition, patients with unexplained neurologic symptoms should be screened for celiac disease and nonceliac gluten sensitivity.
Dr. Pearson is the head of SACS’ Medical Advisory Board and practices integrative internal medicine at LP Internal Medicine located at 899 N. Wilmot Road, Suite D1 in Tucson near St. Joseph’s Hospital 520.302.4033 LPearson@LPInternalMedicine.com
SACS in the Community
By Pat Hirsch
There‘s an encouraging upswing in publicity and awareness on eating out GF-safely! The Arizona Daily Star’s dining and entertainment magazine, ¡Caliente! had a great story, "Dining Without Gluten." Chef Andreas Andoniadis, owner of Opa Greek Cuisine, discussed his methods for ensuring safe GF menu items at all times. Inger Sandal‘s article was full of delicious looking photos of Opa‘s Gluten free food. The article states, "Star dining reviews will now mention if gluten-free fare is offered"! This story was in the Thursday, January 27 edition. It can be seen via SACS‘ website!
AND...Radio personality Matt Russell of KJLL-AM 1330’s On The Menu…Live! spoke with Chef Darryl Wong, owner of Lotus Garden, about the February 3rd Chinese New Year. They talked about what role foods play in the celebrations. During the hour-long show, discussion turned to GF food and how Lotus Garden can transform just about any traditional dish to GF without sacrificing flavor. Kudos to Matt for broadcasting the good news that caring chefs can simultaneously practice culinary artistry, provide excellent GF dishes and reap the benefits of having more customers patronize them. The radio show is heard at 5pm on Thursdays. SACS member Diana Knoepfle put Lotus Garden in touch with the show.
- SACS outreach continues. We‘ll be at the huge YMCA Healthy Kids Day on April 16. Please contact me to help then; it‘s a great opportunity to advance CD/GF awareness and so much fun!
- SACS gives a big thanks to Sprouts Farmer’s Market and the Southern Arizona Women’s Chorus (SAWC), as well as a few SACS volunteers who understand how important awareness is. Sprouts donated to SACS the ingredients to bake fancy desserts for SAWC’s Christmas Concert, thus about 1,050 concert goers had the chance to sample delicious GF snacks while learning a little more about CD. We look forward to the spring concert season so we can do it again!
Here‘s hoping your new year of 2011 is prosperous and 100% gluten free.
SACS Gluten Free Cooking Classes A BIG HIT!
The Southern Arizona Celiac Support Group (SACS) gluten-free cooking classes have been a great success. Our goal is to help our
In class, you will receive all the recipes, friendly instruction, and answers to any of your questions about cooking gluten-free. Please browse our website for schedules and menus.
February‘s class will feature the Gourmet Girls, Mary Gibson and Susan Fulton. They will be teaching the class how to cook bruschetta, pasta, brussel sprouts, and sweetheart cupcakes, all gluten-free.
March‘s class will feature long-time SACS member Joyce Kvanbeck. She will be sharing with the class her favorite lasagna recipe, breadsticks, and a dessert. Sign up early for class, space is limited and fills quickly. Meet your fellow GF eaters, ask questions, and have fun while learning new ways to enjoy food again. Call Corene Johnson at (520) 577-6930 to enroll. Must be over 14 years and pay a $20 fee for supplies.
What Students are saying:
Theda Doak said, "Thanks to Corene for the great idea of a GF cooking class and inviting us into her lovely home to create wonderful and exciting recipes. Each month we are provided with new ideas, good organization and lots of laughs. Looking forward to next month."
Joyce Kvanbeck said, "I enjoy it! I learn something new each class. It is great being with other people who eat gluten-free, and I do not worry about contamination."
Linda Walker said, "I love it, it‘s a great thing."
March 5 GF Cooking Class: Lasagna Breadsticks Dessert
To learn how to cook easy, healthy, GF meals
March 5 from 10am-12:30p
4662 E. Don Jose Drive Tucson, AZ 85718 Corene Johnson, Hostess
Anyone over age 14 (limit of 10 per class)
$20.00 per person
Call Corene Johnson (577-6930) to reserve your space for the fun!
Seymour Saltzman who passed away in 2010
Elton Gosse who passed away in January 2011
Both were long-time key members of our group who will truly be missed
Save the Date Saturday April 2011 SACS Annual Gluten-Free Food Faire
Gluten--Free Food Faire
Holiday Inn @ Palo Verde 9am — 1pm
GF Vendors Silent Auction
Donations for our Silent Auction at the GF Food Faire on April 30. Contact Kim Pebley, 219-7076 or firstname.lastname@example.org
GFFF volunteers needed to pass out samples, assist at sign-in tables, etc. Contact Volunteer Coord. Celeste Harvey, 721-6767, email@example.com
Do YOU have connections to a GF vendor? Tell Kim! We are competing with other GFFF around the country and so are especially interested in showcasing local vendors who are endeavoring to address the needs of those following a GF lifestyle. We like to hear when there is a another new GF option!
Mark Your Calendar
- February 11 — Noon, GF Lunch Bunch, Zona 78, 78 W River Rd, RSVP Corene 577-6930, firstname.lastname@example.org
- February 12 — 11am Potluck + Mini Shop-a-Thon @ The Journey church, 4700 N. Swan Rd*
- March 5 — 10am, GF Cooking Class, RSVP 577-6930*
* = more info inside newsletter
GF Lunch Bunch Second Friday each Month
GF Dining Out Fourth Friday Evening each Month
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