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Text version of Celiac Digest below:

 

Fasano wows enthusiastic crowd at U of A

By Laura Davies

With wit, energy and passion, Dr. Alessio Fasano, MD spoke to an appreciative and filled-to-capacity audience at the U of A School of Pharmacy at our last general meeting on January 15.  Dr. Fasano is Professor of Pediatrics, Director, Pediatric Gastroenterology and Nutrition, Medical Director, Center for Celiac Research (CFCR) at the University of Maryland School of Medicine.  Pam King, Director of CFCR also attended.

   Dr. Fasano’s talk began with an historical perspective of Celiac disease (CD), a summary of three research studies, and a scientific lecture on how CD damages the intestine.   He responded to audience questions a couple of times during the session from cards handed in by audience members.  This was extremely helpful since each person at the event could have him address his or her own particular area of interest. 

   The overall tone of his lecture was positive; there are many scientific advances being made in understanding CD.  There have been huge advances in diagnostic techniques, and some groups are currently working on a noninvasive test for CD.  Some research centers are seeking a cure for CD, and some are working on developing a vaccine for preventing CD. 

   Dr. Fasano discussed the groundbreaking 2003 study (published in the Archives of Internal Medicine, February 10, 2003) which estimated that the prevalence of CD in the general population is 1:133, while the prevalence among first degree relatives of Celiacs is 1:22  and 1:39 in second degree relatives.  This means over two million Americans are yet to be diagnosed with CD, and the NIH is suggesting closer to three million Americans may have CD.  He said that the NIH is planning a publicity campaign focused on CD over the next year.

   He also described two other studies, one involving a number of health centers screening patients for CD, and another attempting to develop an understanding of what a “safe” level of gluten is before intestinal damage occurs.  The current standard of 200 parts-per-million (ppm) may be reduced to 20 ppm. He also described his own work with “zonulin”, a protein found in higher levels in Celiacs.  The idea of zero ppm is impractical as that would require ‘clean room’ technology for all food processing, from arts-per-million (ppm) may be reduced to 20 ppm. The idea of zero ppm is impractical as that would require ‘clean room’ technology for all food processing, from  the fields to the consumer.

    He said the idea that in Europe it is mostly the Irish and Italian populations presenting with CD is outdated.  It may be that they are diagnosed more frequently since they present symptoms in a “typical” pattern.  While most celiacs have the genetic markers HLA-DQ2 or HLA-DQ8, about 0.5% seem to have neither gene.  He also described his own work with “zonulin”, a protein found in higher levels in celiacs. 

  Dr. Fasano is proud of the fact that two weeks prior to his talk the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) published “Guidelines for the Diagnosis and Treatment of CD in Children”.  The foundation associated with this group, the Children’s Digestive Health and Nutrition Foundation (CDHNF) provides information on pediatric gastrointestinal, liver and nutritional issues.  CDHNF has a website, www.celiachealth.org, and Dr. Fasano is the Chair of the CDHNF CD Educational Campaign.  He gave Georgina Rubal, President of SACS, a copy of a CD-ROM from this group. [Note: copies of this CD are available. See notice page 2 and order form page 6.]

Some of the important points Dr. Fasano covered in his nearly 2 ½ hour non-stop talk included:

The importance of the private donations received from the International Walks to help fund the activities of the CFCR.  The CFCR works hard to improve the quality of life for celiacs and their families.

The exciting developments in understanding the mechanisms of how gluten is damaging to the celiac patient, and how CD presents the best model for researching other autoimmune disorders such as thyroid disease, multiple sclerosis, rheumatoid arthritis and Type 1 diabetes.

The lack of a definition of the word “Gluten-Free” in the U.S.  He described working with the FDA on this subject currently.  For those of us who follow a gluten-free diet the lack of standardization is a subject that we must pay attention to closely.

The prevalence of CD does not appear to be increasing (unlike childhood asthma, for example), and increased awareness is leading to more cases of CD being diagnosed.  That said, however, autoimmune disorders appear to be rising sharply.

The occasional accidental ingestion of gluten appears to be less harmful than a regular intake of gluten (for example, in a daily pill).

   Many thanks to Cleo Anderson and the rest of the SACS Board for inviting Dr. Fasano and Ms. King to Tucson to address our group.  His talk was inspiring and will hopefully encourage us all to become involved in the 4th Annual International Walk taking place on April 23, 2005 at the University of Arizona.  SACS sends 85% of proceeds from this event to the CFCR and keeps 15% for group educational purposes. 

 

 Dangerous Grains author to speak

at our March general meeting

 

   Don’t miss our March 26th general meeting at the Marshall Auditorium on the TMC Campus (site of last year’s Food Faire) from 9 a.m. to noon. 

   Our speaker will be Ron Hoggan, Ed. D, co-author of Dangerous Grains.  He was diagnosed with celiac disease in 1994, and his subsequent research on gluten grains and their impact on human health has been published in peer reviewed science and medical journals as well as in numerous newsletters and on many websites. Hoggan is a widely respected writer within the gluten-sensitive and medical communities.

“Controversies in Celiac Disease: Still More Questions than Answers” is the title of his talk. Part of Hoggan’s  presentation will be a question-response period, so come to the meeting prepared with Celiac issues you want addressed.

   His book, Dangerous Grains, will be offered for sale at the gathering.  It is a readable and accurate account of the myriad facets of Celiac       Disease and is written from the perspective of a fellow sufferer.  He also has a website devoted to Celiac education and information at http://www.gluten -free.org/hoggan .   Bring along some of your favorite gluten-free snacks to share.  Since many of our members are sensitive to foods other than gluten, please list the ingredients or bring the wrapper from a purchased item.(Directions: Map to the meeting site  is available online at www.SouthernArizona CeliacSupport.org. )

 

Celiac bracelets for sale at Walk

 

SACS will be selling Celiac awareness bracelets (like the Lance Armstrong LiveStrong wristbands) in child and adult sizes for $3.00 each at our April 23rd Walk.

   Buy one for yourself, your friends, relatives, and colleagues. Children and teenagers love these bracelets, and they are a definite conversation starter. 

   The bracelets are dark green in color and have ‘CFCR’ with flanking feet logos as well as the ‘Making Tracks for Celiacs’. Proceeds benefit Celiac research through CFCR.

 

Outback Steakhouse

GF Dining Club

March 16th— 6:30 p.m.

Grant Road East of Swan

in Crossroads Festival

R.S.V.P Karen Keating

885-4828 or KKeating1111@hotmail.com

 

Celiac information available

 

SACS has cutting-edge Celiac information available via CD-ROMs, Audio CDs and a DVD. 

   The CD-ROM is a copy of the PowerPoint presentation used by Dr. Fasano at his Jan. 15th lecture and makes a perfect ‘gift’ for the health-care professional or anyone interested in the latest research in Celiac disease.  You need a computer to access this CD-ROM.

   Member Cheryl Wilson videotaped Dr. Fasano’s presentation, and this entire presentation is available in DVD format. You do need a DVD player to view.

   CSA/USA recently sent delegates to their October conference audio CDs featuring the speeches of many of the presenters.  Copies of these are available and will play in any CD player.

   All copies are on a plain CD (or DVD) and in a slim-line jewel case.  See the order form on page 6.

 

Chapter 15 Notes

New Clinic opens at Stanford, CA The Celiac Sprue Management Clinic opened at Stanford Hospital in January of 2005.  Dr. Gary Gray, Dr. Gail Pyle (a Celiac) and a dietician.  The purpose of the clinic is to provide longtime medical and nutritional support for adult Celiacs. Information on how to schedule an appointment is available at (800) 756-9000 or email your inquires to:  referral@stan fordmed.org   They accept several insurance plans.  Call 650-724-1460 for any insurance questions.

 

Mrs. Butterworth’s and Log Cabin syrups have a small amount of barley (natural flavor) in them and have never been GF. Log Cabin Country Kitchen, however, is GF.

 

IHOP makes its famous omelets with just a splash of pancake batter.  In other words, it’s enough to make us ill.  This info is not disclosed on the company website or on the menu.

 

Peeps – all shapes and colors – are GF.  Have a Happy Easter!

 

Nature Path Rice Puffs are not considered by their company to be GF as they are not made in a dedicated facility.  The French packaging indicates otherwise.  The company advises eating only those products labeled GF on the front of the packages. 

 

Tylenol and Motrin preparations do not contain any gluten according to their consumer relations contact.  The starch in their products is derived from corn.

 

Halls Cough Drops are NOT GF.  Their sugar-free cough drops are GF.

 

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 825-3032

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

 

Roundtable is March 16 this month!

 

SACS needs board members!

 

Due to unexpected resignations, SACS needs a president, president-elect, secretary and another member-at-large for our next fiscal year beginning June 1st.  President Georgina Rubal cannot carry out the second year of her term because of her increased school-related responsibilities next year. 

   Cleo Anderson, the president-elect, is moving back to Montana due to work-related requirements.  We are going to miss her!  She has, however, promised to come back to Tucson and SACS in five years when she retires.

   Hetty Pardee, our current secretary, has said she would rather take over the treasurer’s duties, so her office needs to be filled.  Our current treasurer, Sue Beveridge, will be membership chairperson as Marilyn Ringer does not want to continue.

   If you can serve or want to nominate someone, contact Nominating Committee Chairperson Mary Louise Catura at 298-1038. 

   According to Dr. Fasano’s CD-ROM, there are 57 undiagnosed Celiacs for every one of us.  It’s organizations like SACS that make sure they are reached … and SACS cannot make it happen without volunteers.

 

Health news to use

 

Wheat-free may not be

 

   According to a March 22, 2004 report by Melissa Schorr  of WebMD Medical News, one fifth of common grocery foods labeled wheat-free or gluten-free may actually contain significant amounts of wheat protein.

   "Caution must be taken when eating foods labeled gluten-free," says Ashley Lardizabal, a graduate student at the Food Allergy Research and Resource Program at the University of Nebraska in Lincoln.

   There is no single standard for defining a gluten-free product. Therefore, the researchers conducted their study to find out the levels of wheat proteins in all types of foods considered non-wheat—like chicken bouillon, corn cereal, and caramel ice cream topping.  Out of 140 samples of foods purchased at the grocery store, 16% of the products tested contained wheat proteins. 

   Most disturbingly, Lardizabal reports that 20% of the products

labeled wheat-free actually contained some wheat protein -- even exceeding current labeling guidelines for gluten free.  The full article is available online at  http://my.web md.com/content/Article/84/9 8081.htm

 

 Topical gluten usually not a problem

 

Celiac.com reports that few Celiacs are likely to have any reaction to topical gluten contact. In order for a gut reaction to occur, it is likely that direct contact with the gut lumen is required. Many people with Celiac disease have everyday contact with gluten (for instance, bakers with CD who have contact everyday with wheat flour), and do not have any reaction to it.

   However, there are, on rare occasion, people who have had an anaphylactoid response to gluten, and these people should avoid gluten in all forms. Also, topical gluten breathed into the upper airways may cause symptoms of allergic rhetinitis in rare instances. If there is a simple alternative to a shampoo, cosmetic, etc., you may want to use the non-gluten containing product.

 

 Dr. Fine’s fecal tests for Celiac may be validated  

 

An abstract published on Celiac.com concerns the use of fecal scIgA AGA combined with fecal IgA AGA, IgG AGA and IgM AGA to diagnose Celiac disease.  According to their research, it is a viable, early warning tool to use, especially for those persons with negative blood tests. 

   The initial research sample was small but seems to support the work done by Dr. Kenneth Fine.  The entire article is on Celiac.com.  Use the term fecal scIgA in their onsite search engine to locate the entire article.

 A big thank you!

A big thanks to Jim and Diane Perrine  for escorting Dr. Fasano and

Ms. King to the Jan. 14th dinner at the

Arizona Inn and to Georgina Rubal for organizing the event.

   Many SACS members also attended.  The food was excellent and the conversation wide-ranging and instructive. These topics included:

►There are gluten-free pizzerias in Naples, Italy!

►Dr. Fasano estimates that up to 100,000 people across the US have now been diagnosed with CD, with perhaps over two million still undiagnosed.  He also said that for every male being diagnosed, five to eight females are being diagnosed.

►Teens who are having difficulty with the gluten-free diet frequently ask him if he has tried it personally.  He has -- for one week -- and clearly appreciates the challenges young adults, and all of us have, being gluten-free.

►The National Institute of Health is planning a publicity campaign to increase awareness of CD.

 

Email to supplement SACS phone tree

The good news is that SACS is growing; the bad news is our phone tree members can’t keep up with notifying everyone about meetings, events and/or changes in publicized plans.  So, phone tree ‘news’ will be sent out to everyone with a valid email address and members without email will continue receiving reminder phone calls.

   If you did not get an email notice about the February 16 Dining Club meeting, then you are not on the email list.  If you want to add or remove your email address from the list, please contact info@Southern ArizonaCeliacSupport.org

 

 

Media

CD-ROM of Power Point slides and CME material (Plays only in a computer)

$1

Text Box:  
Name_________________________________________
Address_______________________________________
City __________________State________  Zip________
Phone: _________________________
 
Will pick up the media at the March 26 meeting
 
 Will pick up the media at the March 16 Roundtable
 
 Please mail to me at the address above
 
 Shipping/handling = $1 per single CD, $1.50 for two (first class), $2.75 for three or more ( media rate)
Total for media selected ______________
Shipping (if desired)       ______________
Total enclosed                 ______________
 
Send your check and this order form to: 
S. AZ Celiac Support
1807 W. Mountain Laurel Dr.
Tucson, AZ  85737-7829
Each CD is a plain copy of the media described enclosed in a thin jewel case.  In order to reduce costs, SACS will make only the copies ordered.  Any money not used for the mailing or the purchase of materials will be used to defray the cost of sending free copies to health professionals.
 
 
 

 

 

 

DVD (video) of Dr. Fasano’s Jan. 15 speech and requires a DVD player.

$2

 

Audio CD-ROMS from 10/22-24/04 CSA Conference Presenters in Oklahoma City, OK    

Dermatitis Herpetiformis by Russell P. Hall, MD.  73 minutes

$1

 

Adverse Food Reactions: Food Allergy vs Food Sensitivity/Intolerance by Patricia

Overhulser, MD. 26 minutes

$1

 

Celiac Disease: Chapter by Chapter by Kent D. Katz, MD  61 minutes

$1

 

Designing Healthier Foods through Biotechnology by David Sands, PhD.  52 minutes

$1

 

Self-Management of the Diet for CD by Martha Palotta, LDN, RD, CDE 51 minutes

$1

 

Celiac Disease: Head to Toe, Heart & Soul by Julie Dupell, PhD (clinical psychology) 48 minutes

$1

 

Pleasing your Celiac Teenager … Sigh  by Beth Hillson, Chef  41 minutes

$1

 

Don’t be a Gluten for Punishment: Tips for Living G-F in the Real World by Beth Hillson and Rebecca Reilly, Chefs  76 minutes

$1

 

Making the Chef Your Ally by Aaron Flores, Chef  58 minutes

$1