Charlottesvillie Celiac Support Group - Meeting Highlights

Highlights from the April 5th Meeting

Danna Korn , graced us with her presence from sunny southern California to share her presentation on  "Living - and LOVING the Wheat-Free/Gluten-Free Lifestyle."  She provided us with a very positive approach (for both patient and professional) to deal with life on a gluten free diet.  Danna is the author of Kids with Celiac Disease:  A Family Guide to Raising Happy, Healthy, Gluten-Free Children and Wheat-Free, Worry-Free.  Danna is a national spokesperson for celiac disease awareness and founder of ROCK (Raising Our Celiac Kids): ( http://www.celiac.com/cgibin/webc.cgi/st_main.html?p_catid=8), a support group for families of children on a gluten free diet.  She has been researching celiac disease since her son, Tyler, was diagnosed with the condition in 1991. 

Announcements:

We will be doing a “mini” version of the International Walk for Celiac Disease on May 17.  If you’d like to take a short stroll around UVA to show your support for this cause, join us at 9:30 am in the Dining Conference Rooms.  We’ll go on a short walk prior to our regular meeting.  Any one interested in International Walk for Celiac Disease T-shirts, please contact Pam King, Director of Operations, Center for Celiac Research: pking@peds.umaryland.edu or http://www.celiaccenter.org/.  T-shirts are  $5.25 each.

July 26:  Glutenfreeda

Please join Jessica Hale, co-editor & chef at Glutenfreeda.com for an informative workshop on cooking delicious, easy, gourmet meals that are naturally gluten-free.   The demonstration will show you how to prepare wonderful recipes from naturally gluten-free food that are nutritious, authentic and great tasting.  There are hundreds, thousands of healthy, naturally gluten-free foods that do not need to be 'altered' to be safe.  If you're tired of 'funny' tasting food, or tired of saying, 'it tastes almost like...',this demonstration/workshop is for you.  We'll show you how, once again to buy your groceries from the market instead of the post office, and save money doing so!  Expand your culinary horizons, learn helpful tips and get excited about food again, naturally, with Glutenfreeda.

T-shirt

After adopting our new name, “Charlottesvilli,” we decided we needed a T-shirt to go along with it.  Anna Ashworth has headed up this project.  The design will be going on a light yellow/cream colored shirt.  Those who have ordered one will receive it at the May 17th meeting.  Cost per shirt will be $12.62.  If you have any questions about the shirts, contact Anna at:  agashworth@aol.com

  • HUNGARIAN BAKERY:  Katya outdid herself again for our April meeting!  If you haven’t had a chance to sample some of Katya’s creations, you are missing out.  Katya is the owner of the Hungarian Bakery, which she operates out of her home.  She makes wonderful gluten free baked goods including tortes, muffins, cakes, birthday cakes, cheesecake, cookies and more.   She also has a stand at the Charlottesville City Market every Saturday from April through October.  You can also place orders year round by calling her at 434-973-8863.  
  • The Washington Post had an article on Celiac disease on February 11, 2003.  It is encouraging to see more and more coverage in the media about this disease process.
  • Carol recently presented a lecture on celiac disease to the Annual Virginia Dietetic Association Meeting on April 1, 2003 in Richmond, VA.  The conference is an annual continuing educational event for dietitians.  Andrea and Carol developed a professional manual for healthcare professionals to help them get started with taking care of patients with celiac disease or who are interested in starting a support group. We launched the sales of this manual at this meeting.  
  • University of Virginia’s Celiac Specialist, Dr. Crowe, will also be presenting a lecture on celiac disease this year at the American Gastroenterological Association’s Annual Meeting in Orlando Florida this coming May.   It is the largest GI conference of the year. 

Long-awaited study hit the press and is in the Archives of Internal Medicine:

Fasano A, et al.  Prevalence of Celiac Disease in At-Risk and Not-At-Risk Groups in the United States: A Large Multicenter Study.  Arch Intern Med. 2003;163:286-292.

®Here is the summary by LINDSEY TANNER, AP Medical Writer:

CHICAGO - Celiac disease, a severe digestive disorder triggered by gluten in wheat and other grains, is more common among Americans than previously thought, affecting more than 1.5 million people, a study suggests.  Researchers from the University of Maryland, the University of Chicago and other institutions took blood samples from 13,145 mostly white adults and children, including nearly 9,000 people considered at risk for celiac because of symptoms or family history. Intestinal biopsies confirmed the diagnosis. 

 The disease was present in one out of 22 people who had a close relative with celiac and in one out of 133 participants who were not at risk.  Previous research suggested the disease occurred in about one in 4,000 people nationwide.  The new findings suggest that more than 1.5 million Americans are afflicted, the researchers said.

Sometimes called celiac sprue and often mistaken for other ailments, the disease can raise the risk of gastrointestinal cancer if left untreated.  The new findings - published in Monday's Archives of Internal Medicine - could lead to quicker diagnosis of the ailment, the researchers said.  "If physicians believe that celiac disease is rare, they are less likely to test for it," said lead researcher Dr. Alessio Fasano of the University of Maryland.  Many doctors have considered celiac a childhood ailment, with symptoms including diarrhea, vomiting, gas and weight loss. But it can show up at all ages, sometimes with non-digestive symptoms such as anemia and thinning bones, partly caused by the body's inability to absorb proper nutrients.  Gluten is a protein found in wheat, barley and rye.  Dr. B U.K. Li, chief of gastroenterology at Chicago's Children's Memorial Hospital, said the study is a call for doctors to be "much more aware of this and much more willing to screen our patients who have a variety of symptoms."

FYI

For those of you interested in eating oats, but are worried about issues of purity of oat products, McCann's Irish Oats (see write up below) are available at our local Harris-Teeter in Barracks Road Shopping Center.   The decision to use oats should be one made between you and your physician.

This is from Paul Germann & Associates who are distributors of this product:

“All McCann's oatmeal products are made in a dedicated mill that makes only oat products. In the process, there is a cleaning system that removes non-oat grains, stones, pieces of straw etc.  The farmers deliver in the oats direct from the fields in trailers that might have contained wheat or barley earlier but we insist that they are swept out and cleaned before they use them for oats.

As you can see, we take every reasonable precaution to ensure that there is no possible cross contamination - but can we guarantee absolutely 100% that this is the case with every pack of McCann's that leaves our premises, the answer would have to be "No."  I think that the majority of celiacs would have no problem using our products but they really have to make that decision themselves.”
Paul Germann & Associates Inc.:  pga@webspan.net

From: Cynthia Kupper RD CD
Executive Director, Gluten Intolerance Group, 206-246-6652; www.gluten.net:

  • Q: Is barely and wheat grass safe to use in a gluten-free diet?  What about sprouts?
  • A:  According to information from USDA research chemists, specializing in wheat gluten and cereal proteins and a statement from the American Association of Cereal Chemists, gluten is found only in the seed kernel (endosperm) and not in the stem and grass leaves. If the grass is cut from a growing plant and does not include the seed kernel, it should be safe for persons with gluten intolerance to use. Wheat and barley grass are promoted as having superior nutrients, however the nutrient composition of the grasses is not superior to eating a variety of fruits and vegetables, which would be overall more healthy and less expensive than using this supplement. Bottom line is that I would stay away from it at this time and eat more fruits and vegetables!  My personal and professional choice is not to use these products.  Instead, rely on a variety of gluten-free grains, fruits and vegetables for a nutrient-rich diet.  Feel that you must include a grass in your diet; I would recommend alfalfa grass instead of the wheat or barley grass.

As for sprouted wheat or other gluten-containing grains. These are sometimes used in breads that claim to be gluten-free. In talking with many of these bread companies, they claim their breads have no gluten, but none can guarantee that the seed kernels are completely removed before the sprouts are used or that their products have been tested for gluten content. This presents an unacceptable risk for persons with gluten intolerance. GIG does not recommend these products on a gluten-free diet.

GIG:  The annual GIG conference will be held June 6-8 in Denver, Colorado.  Contact the Gluten Intolerance Group at www.gluten.net for more details, or call 206.246.6652.

You all are so great, thanks for making it such a pleasure for Andrea and I…
Happy Spring!

Although a little late in the season, I thought I would share one of my favorite poems:

Daffodilsby William Wordsworth

I Wander’d lonely as a Cloud
            That floats on high o’er Vales and Hills,
When all at once I saw a crowd,
            A host, of golden Daffodils,
Beside the Lake, beneath the trees,
Fluttering and dancing in the breeze.

Continuous as the stars that shine
            And twinkle on the Milky Way,
They stretch’d in never-ending line,
            Along the margin of a bay:
Ten thousand saw I at a glance,
Tossing their heads in sprightly dance.

The waves beside them danced, but they
            Outdid the sparkling waves in glee:--
A poet could not but be gay
            In such a jocund company:
I gazed—and gazed—but little thought
What wealth the show to me had brought:

For oft, when on my couch I lie
            In vacant or in pensive mood,
They flash upon that inward eye,
            Which is the bliss of solitude,
And then my heart with pleasure fills,
And dances with the Daffodils.

See you in May!  JJ