DNA test flags CD
By Evelyn K. Cohen
Celiacs with symptoms and celiacs who are not obviously symptomatic now have a DNA test.
The DNA test results are said to be reliable and it is believed the test need only be performed once in a lifetime. What's more, the DNA test eliminates the need for a gluten challenge, a biopsy, and/or a doctor's cooperation.
The simplicity of the test will result in more family members being tested, thereby heading off the long-term, wide-ranging damage caused by CD before it presents in the gut or on the skin.
Nancy Schuller, R.D., a member who was featured speaker at September's general membership meeting, introduced the CD DNA test information. Jeanette Sather, a member, distributed copies of a newsletter story about a doctor who is using the test.
The DNA test news reached us in time for Celiac Awareness Month, which is October. More than 100 Southern Arizona Celiac Support (SACS) Group members attended the meeting.
One firm offering a mail-order CD DNA test is Kimball Genetics Inc., 101 University Blvd., Suite 350, Denver, CO 80206.
The toll-free phone number is 800-320-1807 and the direct phone number is 303-320-1807. Check out the company's website at: http://www.kimballgenetics.com/tests-celiacdisease.html.
The Kimball Genetics website notes "Early detection through antibody and genetic testing and subsequent elimination of gluten from the diet is essential in aiding disease prevention and treatment."
The website remarks that "Celiac disease affects approximately 1:120-1:300 individuals in the European and North American populations and is considered to be is one of the most common and under-diagnosed diseases today."
Annette Taylor, Ph.D., lab director at Kimball Genetics Inc., told Celiac Digest in a phone conversation, that the celiac DNA test requires a blood sample, but Kimball, which does other DNA testing by cheek swab, is developing a cheek swab test for celiacs.
Until that time, the lab provides a blood test mail kit you should bring to a medical professional. The fee is $325 for each test, with a 10 percent discount ($32.50) if you pay up front and in full with a credit card. Shipping is free via FedEx, and turnaround time is three to four business days.
According to the website, the blood specimen required is 5 ml blood in an EDTA (lavender top) tube, at room temperature. Dr. Taylor recommends bringing the Kimball kit to your medical professional in order to expedite the return mail process.
The website notes that the fee covers detailed reports with genetic interpretation, recommendations, and education as well as free genetic counseling for physicians, patients, and families
The website lists the following indications for suspecting celiac disease: iron-deficient anemia: children with abdominal pain, diarrhea, abdominal distention, failure to thrive, short stature, delayed puberty, irritability, attention-deficit disorder, and/or poor school performance; adults with diarrhea, abdominal pain and distention, recurrent apthous stomatitis (cold sores), osteoporosis, infertility, multiple miscarriages, anxiety, and/or depression; children with Type I diabetes, individuals with dermatitis herpetiformis, and relatives of individuals with celiac disease.
"Celiac disease, also known as gluten-sensitive enteropathy and celiac sprue, is a chronic autoimmune gastrointestinal disorder. In genetically susceptible individuals, the ingestion of gluten-containing grains causes inflammation of the small intestine mucosa and leads to malabsorption," the website states.
CD walk set for April 24, volunteers sought
Our Third Annual Walk for Celiac Disease will begin Saturday morning, April 24, 2004, at the University of Arizona Mall. This event is designed to bring in research funding and to raise awareness in Southern Arizona of the frequency of celiac disease.
Frequency is generally believed to be one in 130 people, but the disease is under diagnosed in the U.S.A.
Last year we sent more than $8,000 to the Center for Celiac Research at the University of Maryland. Naturally, we would like to top that this year.
Volunteer subcommittee leaders and subcommittee members are needed to help out with soliciting sponsors and raffle prizes, event promotion including flyers, websites, physician contact, radio and TV coverage, and other tasks. Please contact our 2004 walk chairperson, Colleen Beaman, 520-743-7979, to volunteer. We need your help. Your dog is welcome to come, too!
3rd Wednesday GF dining
enhances our CD life style
Our Gluten-Free Dining Club which meets at a different restaurant at 6:30 p.m. on the third Wednesday of each month, except for November and December, has dined out twice. Thanks to the dinners we can feel safer having meals at the Kingfisher Grill, 2564 E. Grant Road, and the Adobe Wine Deli, St. Phillips Plaza--4280 N. Campbell Ave.
The next GF Dining Club experience will be at 6:30 p.m., Wednesday, Jan. 21, at PF Chang’s, River Road and Campbell Avenue. To attend, just RSVP to Karen Keating, 520-885-4828, by the Friday before the event so that she can make reservations for a specific number.
We're all invited to join the diners so that we can practice ordering gluten-free meals from restaurant menus as we raise celiac awareness in the food service industry. Of course, the dinner table conversation is loaded with tips from our fellow celiacs.
Eat treats, avoid tricks on Halloween
By Shirley Curtis
I found this information on my Celiac list serve just in time for Halloween treats and/or left-over treats. This could be hard on our waistlines, but Snickers and some other sweets are gluten free. Proceed at your own risk so as not to be tricked.
The Safe Products...
Cadbury-Trebor http://www.cadbury.com (9/03) has provided a document file of GF products, including Halloween goodies (REFER TO ATTACHED FILE, which dates 9/02).
Chocolate Emporium Halloween treats http://www.choclat.com/Halloween/halloween.htm (9/03) - Wow! Check out these really COOL (expensive) Halloween goodies!!!! All GF except those marked with asterisk.
Hershey's 800-468-1714 (9/03) Milk Chocolate Ghosts (individually-wrapped) and Marshmallow Pumpkins (individually-wrapped), KISSES chocolates, Hershey's milk chocolate bar, Hershey's milk chocolate bar with almonds, JOLLY RANCHER hard candy and lollipops, TASTETATIONS hard candy, Hershey's Classic Caramels, see Note**b below.
M&M-Mars' 800-551-0702 (9/03) Snickers Pumpkins (individually-wrapped), M&M's plain and peanut (not crunchy), Skittles (all varieties), Starburst (all fruit chews, jelly beans, lollipops), 3 Musketeers, Snickers, Snickers Munch, Snickers with Almonds, Milky Way Midnite (only!), Snickers ice cream bars, Dove chocolates, Dove ice cream bars (snack sized and individual bars).
Nestle's 800-258-6728 (9/03) Butterfinger (Please see Sweet treats page 3) Chunky;Nestl=E9 Milk Chocolate, Oh Henry!, Nestl=E9 Turtles, Sno-Caps,Butterfinger BB's, Goobers;Raisinets, Nestl=E9 Treasures, Wonderball, SweeTARTS, SPREE, Nips; Wonka Candy-Pumpkins (individually-wrapped; see Note *a below), Baby Ruth, Butterfinger, Chunky; Nestlé Milk Chocolate, Oh Henry!, Nestlé Turtles, Sno-Caps,Butterfinger BB's, Goobers;Raisinets, Nestlé Treasures, Wonderball, SweeTARTS, SPREE, Nips; Wonka Candy-Bottlecaps, Fun Dip (Lik-M-Aid), Gobstoppers, Mix Ups, Nerds, Shock Tarts, Tart N Tiny, Runts, Tangy Taffy; Seasonal Candy/Easter-Milk Chocolate NestEggs, Caramel NestEggs, Peanut Butter, NestEggs, Butterfinger NestEggs, Baby Ruth Creme Egg; Seasonal Candies/Christmas-Milk Chocolate Jingles, Baby Ruth Winter Wobbler, Spree and SweeTARTS Candy Canes, Butterfinger in Milk Chocolate Jingles; Seasonal Candies/Valentine's-Milk Chocolate Hearts, Butterfinger in Milk Chocolate Hearts, Butterfinger in Milk Chocolate Solid Tigger, SweeTARTS Lollipop
Russell Stover Halloween treats 800-777-4028 (9/03) - individually-wrapped candies of Peanut Butter Ghost, Buzzard Nest,Orange Flavored Marshmallow Pumpkin - , see Note ***c below. Terry's brand/Nabisco 800-622-4726 (9/03) boxed Milk Chocolate Orange Mini-slices and Dark Chocolate Orange Mini-slices, see Note**b below:
*a. The label states "Made on equipment that also processes nuts and wheat ingredients." HOWEVER, Nestle reassured me that this candy lacks any wheat/gluten, separate manufacturing runs are done to manufacture gluten-containing versus gluten-free candies, AND they have standard operating
operating procedures for cleaning the equipment lines between all runs. I am convinced of GF safety, but you can make your personal choice given this information.
**b. Both Nabisco and Hershey's will label ALL ingredient sources containing gluten, even if hidden in other ingredients. These companies label for the "8 Major Allergens" (which includes wheat) but also disclose any rye and barley.
***c. While the wrapper labels all state: Products have been produced on shared equipment with peanuts, tree nuts, milk, eggs, soybeans and wheat, I was assured that this is
a precautionary statement only. Appropriate manufacturing procedures are in place to prevent contamination between product runs. These candies do NOT contain gluten in product formulation. Given this knowledge, you can make a personal decision as to if you are comfortable with the GF status of these products.
The Unsafe Products...
Brach's www.brachs.com (9/03) will not guarantee safety of any candies. However, the manufacturer stated that they plan to implement a project to determine gluten status of all products in the future. We will wait! Mar's brands 1-800-551-0702 (9/03) of Poppable's bagged candies - all contain wheat
Zachary Confections products 1-800-445-4222 [ask for Alan Johnson] (9/03) - Candy Corn, Pumpkins and Harvest Mix may potentially be cross-contaminated due exposure to equipment that otherwise holds gluten-containing candy (~50 ppm) Nestlé's 800-258-6728 (9/03) Wonka Laffy Taffy Flavor Flippers contain glucose syrup from wheat.
Chapter 15 Notes
Speedy recovery: Julia Kelly, education chairperson and member-at-large. Get well soon.
Congratulations: Pat Ewing on receiving a National CSA Service Award.
Phone numbers to keep: 877-272-4272 toll-free (877-CSA-4CSA), CSA/USA 8 a.m. to 3 p.m. Central Time.
Change of address: Changed your address? Name? Notify Jill Rouw, membership chairperson, 790-7352. Grocery shopping: Reach a Fry's Food & Drug Stores dietician toll-free at 866-632-6900 8a.m. to 5 p.m. weekdays for GF info on store brands. They return voice mail messages.
We need more Roundtables
By Evelyn K. Cohen
The Roundtable Forum that meets at 1 p.m. on the fourth Wednesday of the month (except November and December) is a great place for new members to get a welcome and a welcome place for all members to share tips, recipes and gluten-free goodies. There are usually 10 to 20 people at each meeting enjoying the support and the snacks.
Although the meeting place in the Columbus library branch at E. 22nd Street and S. Columbus Blvd., is probably near the middle of Tucson, it is a long haul for members in out-lying areas. The 1 p.m. time slot also pretty much precludes attendance by working people not on the night shift.
As more celiacs are diagnosed in our region and the Southern Arizona Celiac Support Group continues to grow beyond 150 members, it's becoming obvious that we need more Roundtable Forums at different times and places. It's likely that public meeting rooms in other areas could accommodate small groups also.
Feel free to chair your own Roundtable Forum, even if it’s just two or three members. It will surely grow. If you need help locating other members in your area, please contact one of the officers listed in the Leadership Contact column in this publication.
Meanwhile, if you get the chance, drop by our January Roundtable Forum. It's very informal and we all learn a lot. Besides, our chairperson, Marry Louise Catura, is a really good role model.
Mark your calendar
Nov. 8, 9 a.m.-- General meeting, Rincon Room, Alamo Building, Tucson Medical Center.
Nov. and Dec. -- Roundtable Forum and Gluten-Free Dining Club discontinue for holidays.
Jan. 21., 6:30 p.m. -- Gluten-Free Dining Club resumes, PF Chang’s, River Road and Campbell Avenue. RSVP by the Friday before to Karen Keating, 520-885-4828.(Meets every third Wednesday through October, same time, different restaurants.)
Jan. 24, 9 a.m. -- General meeting, Rincon Room, Alamo Building, Tucson Medical Center.
Jan. 28., 1 p.m.-- Roundtable Forum resumes, Columbus Library, E. 22nd Street and S. Columbus Blvd. (Meets every fourth Wednesday through October, same time, same place, unless otherwise noted.)
March 14 -- Pot Luck, Reid Park, time and place to be announced.
April 24 -- Third Annual Celiac Walk, University of Arizona Mall.
May -- Food Fair. Date, time and place to be announced.
Fast food is possible
McDonald’s, Subway and Wendy’s offer nutritional information on their websites which makes traveling just a little easier for us.
They all provide lists you can print and carry with you. You can access the information on these websites:
If you do not have a printer and/or Internet access, contact Shirley Curtis (744-9549) for a printed copy.)
(Printed copies are also available at the General Meetings. See you there!)
GF and Low-Carb Apple Cobbler
3 cups sliced tart apples (like Granny Smith’s)
½ cup *Splenda (or brown or white sugar if you’re not counting carbs)
1 tsp. cinnamon
½ tsp. nutmeg
1 tsp. vanilla extract
3 Tbs. small tapioca beads
1 cup macadamia nuts, chopped
½ cup butter, melted
Preheat oven to 350 F. Mix apples with the next five ingredients. Let sit for about 20 minutes. Mix chopped nuts with melted butter and spread the mixture over the apples in a 6”X 9” baking dish. Bake for 40-50 minutes or until bubbling and golden brown. Recipe may be doubled.
Reprinted by permission from Angela Taylor’s website at: http://members.fortunecity.com/cdhg/index.htm
Nov. 8 meeting slates reports, videos, foods
Nov. 8 general meeting activities will include a summary of the national CSA/USA conference in New York where one of our own, Pat Ewing, was cited with a CSA National Service Award.
Also up for discussion will be the American Celiac Task Force and the U.S. House of Representatives status of the gluten-free labeling bill. Two videos will be shown: a celiac report from network TV, and a local TV interview of Karen Keating, GF Dining Club chairperson.
New products including cake mixes and granola will be on sale, and we will have a raffle with many prizes.
Mrs. May’s Naturals are GF, Non-GMO and vegan nut snacks. They have no preservatives, no artificial colors, and no artificial flavorings.
Costco sells the Almond Crunch in a 20 oz bag for a little under $6 and New Life Health Centers sells the 5.5 oz bags for $3.69.
Or, you can order directly from their website at www.mrsmays.com.
(Email or call the editors with your food find to feature in our next newsletter.)
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