Graphics intensive version of Celiac Digest in PDF format:
Page1 , Page2, Page3, Page4, Page5, Page6, Aftercare1, Aftercare2
Election, Food Fair set for May 22
Don’t miss the Food Fair and the election of Chapter 15, CSA/USA officers starting at 9:00 a.m. Saturday, May 22, when SACS meets in the Marshall Auditorium on the Tucson Medical Center campus, North of East Grant Road at Beverly Avenue, Tucson. It is our last general session until September. (See map and the agenda on Page 6, which is the back of Page 5.)
Food Fair goodies are donated by manufacturers or retailers for our grazing pleasure. There also will be free samples to take home. Best of all, you do not have to prepare anything. Some of the foods that require cooking or baking, however, will be prepared by SACS board members so that we can sample them. Entry to the meeting is free, and non-members are welcome, also.
Do bring your checkbook, however, because some of your favorite GF products, as well as CD Walk polo shirts ($12), and CD Walk T-shirts ($5) will be offered for sale.
Your checkbook also will come in handy because it is membership renewal time. Please fill out the renewal form inserted in this “Celiac Digest” and bring it with you. Chapter dues have gone from $10 to $12 for the year starting July 1, 2004.
Members not paid up (or granted dues assistance) by September will not be on the 2004-2005 “Celiac Digest” mailing roster. Your resident immediate family receives membership by your dues, and one need not be a Celiac to be a member. However, each paid-up member household receives only one copy of “Celiac Digest” in each mailing.
slate for the election of Chapter 15 officers for the 2004 – 2005 year so that you will be prepared to vote.
While the Food Fair/Election meeting will be our last general meeting for our 2003-2004 fiscal year. The Roundtable Forum, chaired by Mary Louise Catura, a past SACS president, meets through the summer.
Roundtable sessions are set for 1 p.m. on the fourth Wednesday of the month (except November and December) in the Columbus Library, East 22nd Street at South Columbus Boulevard, Tucson.
SACS enjoys CD Walk while raising (GF) dough for research
SACS received more than $7,000 by April 29 for Celiac research through pledges and contributions to the Third Annual Walk for Celiac Disease. Although the CD Walk was held on April 24, pledge and purchase fulfillments as well as donations normally continue through May. CD research at the University of Maryland, Baltimore, benefits from our efforts.
If you could not be at the University of Arizona campus for the Walk, you can still contribute to the international effort for Celiac Disease by donating what you can afford during the May 22 Food Fair/Election general meeting at Tucson Medical Center’s Marshall Auditorium.
About 150 SACS members, friends and relatives participated in the CD Walk on the administration building mall at the University of Arizona, Tucson.
Among those taking to the podium at the event was U.S. Rep. Jim Kolbe of Tucson, a Republican representing Arizona’s eighth Congressional district. Rep. Kolbe pledged support for H.R. 3684, the food-labeling bill, which already has been approved in a similar form by the Senate. Passage of the law would make it easier for Celiacs to identify gluten in foods.
In addition to the “World’s Longest Gluten-Free Buffet,” entertainment included the Saddle Brooke Silver Belles, a group of mature dancers comprised of Ann Kurtz, Vivian Herman, Marcy Dale, and Kathy Anderson. A change of pace was provided by the Pima County College Kelly Dancers -- Christiana Russell, Heidi Cornwall, Brittany Hanna , and Elizabeth Kosonoy, a teacher of folk lore, from Nogales.
Excitement was generated by the quality of raffle and auction items donated by a host of contributors. According to a list issued by Colleen K. Beaman, Walk chairperson, items included a Beanie Babies set-and a walking stick; and numerous restaurant gift certificates.
Also, GF treats for kids, “Sopranos” and “Sex in the City” T-shirts, glassware from
Ireland, a kids’ guitar music collection, work on your last will & testament by an attorney, and magic tricks videos.
Also, a painting and a print, a quilt, a soup tureen, a sweater, sports apparel, food market gift certificates, a fondue set, and a choice of a horseback-riding lesson or a two-hour horseback ride.
In addition there was a one-year subscription to Gluten-Free Living magazine and a genetic testing gift
SACS seeks help; four jobs open
Please talk with board members (see SACS Leadership column Page 5) right away if you believe you can fill any one of four new positions that are opening up for next term (July 1, 2004 – June 30, 2005) on the SACS board.
SACS is looking for four talented and experienced people (enthusiasm counts, too) for the following positions: Raffle chairperson; grant writer, co-chairperson for the 2005 Walk, and a newsletter writer -- copy/layout editor.
The raffle chairperson solicits businesses and others for raffle prizes and also oversees raffle sales at all events. Georgina Rubal, our former raffle chairperson and member-at-large, is president-elect and will likely be elected president on May 22, 2004.
The grant writer should be familiar with government and private grant writing techniques so that we can compete successfully for funding related to our mission. That mission is to bring awareness of Celiac Disease to the public and to the medical profession so that fewer Celiacs go through life suffering needlessly.
Co-chairperson for the Celiac Walk, 2005 will mainly coordinate publicity. He or she would be working with Colleen Kelly. Walk related activities are year round.
The newsletter writer -- copy/layout editor provides SACS-related news stories to the Celiac Digest to keep the membership informed of chapter events, leadership contacts, and other items of interest. The writer – copy/layout editor- will work with Shirley Curtis. Shirley also writes for the newsletter, does the design work on her computer, and gets the copies printed and mailed. Shirley is our web mistress as well.
Evelyn Cohen, who worked with Shirley on the newsletter for the 2003-2004 term, plans to do publicity intended to raise public awareness of SACS and CD.
Bluepoint scores; GF Diners break for summer
Atmosphere and the well-prepared American menu selections highlighted the GF Dining Club’s visit April 21 to the Bluepoint Kitchen & Bar, 2905 East Skyline Drive at Campbell in La Encantada Plaza, Tucson.
“The chef, Justin Mayer, is very accommodating to our dietary requirements and willing to make substitutions. Roughly half the items are GF. We had the blackened salmon Caesar salad, and the grilled salmon and grilled chicken. Both were delicious,” said Karen Keating, GF Dining chairperson.
The Gluten-Free Dining Club, which is taking a summer break, recommends that SACS members sample offerings at the six Celiac-aware restaurants the club visited over the last several months.
Those restaurants include the Kingfisher Grill, the Adobe Wine Deli, PF Chang’s Chinese Bistro, Elle, and Jonathan’s Cork. If you go, please tell them you are affiliated with CSA/USA through Chapter 15, SACS.
The next meeting will be in September at a time and location to be announced. If you have suggestions for 2004 - 2005 GF Dining Club activities please contact Karen at 885-4828 or email - KKeating1111@hotmail..
Wild Oats has GF brochure
From pizza dough to Thai stir fry, Wild Oats has an extensive listing of GF products in its nine-page gluten-free product guide. This brochure is available in store or on their website as a printable download: http://www.wildoats.com/content/12644_Gluten_Free_Guide.pdf Sensitive celiacs will appreciate that some products are noted as possibly having cross-contamination problems and which are made in a dedicated facility or meet Codex standards.
If you sign up your e-mail address at the Wild Oats site, you will receive e-mails from time to time with coupons for discounts. As a bonus, Wild Oats gives a 10% discount to anyone 60-years-old or over.
Roundtable expands to welcome more Celiacs
Have you been out to a Roundtable Forum lately? If not, you might be surprised to learn that Roundtables are being very well-attended. Some of them have been nearly standing-room-only.
The next meeting is at 1 p.m. Wednesday, May 26, at the Columbus Library, East 22nd Street at South Columbus Boulevard, Tucson.
The high attendance could mean that more doctors are sending the newly diagnosed to us, or there is more word of mouth, or newspaper are listings us, or there is more clicking on www. SouthernArizona CeliacSupport.org, or it’s the unusual GF products offered for sale.
Maybe it’s the way we all share problems, CD news, advice, recipes and treats in an informal environment that resembles a family picnic.
Maybe it’s Mary Louise Catura, a past SACS president who is Roundtable Forum chairperson. What ever the attraction is, you can’t lose by attending. Everyone learns something, gains courage and goes home equipped to cope better with their CD.
The Roundtable Forum continues through the summer meeting at 1 p.m. every fourth Wednesday in Columbus Library.
Chapter 15 Notes
Buckwheat, teff, mesquite meal, amaranth, montina and millet are gluten free, provided they are not contaminated.
Vanilla extract, the pure and real thing, has been deemed gluten free. Proceed with caution.
Got gluten in your meds? Contact Poison Control to find out.
Distilled white vinegar is believed to be gluten-free. Distillation destroys the gliadin. Proceed with caution.
Depression is an early and typical symptom of Celiac Disease.
Wheat-free does NOT mean gluten-free. Examine label carefully or call.
GF bakers use one-teaspoon xanthan gum to one cup GF flour mix to get that wheat-like gluey factor. Another gluten substitute is pectin water from boiled apple peels or commercial pectin.
Caramel coloring can be made from barley. Caution is advised. Most in the US is made from corn.
Wild Oats is offering Celiacs the store’s new gluten-free foods pamphlet.
Walgreen’s stores will print out a list of gluten-free products on request.
CSA/USA: 877-272-4272, 8 a.m. to 3 p.m. Central time.www. csaceliacs.org.
Change of address/phone number: Change of email: Notify us via the link at SouthernArizonaCeliacSupport.org.
Subscription discounts are available if at least 10 new readers sign up for Living Without magazine. Contact Mary Louise Catura via this website.
GF shoppers win and lose
By Georgina Rubal
A step forward: Philly Swirl, a Florida-based ice cream company, has teamed up with the University of Maryland's Center for Celiac Research to help raise money for research. Currently Philly Swirl is re-labeling their popsicles as gluten-free. Save the boxes from PhillySwirl Popsicles and send to the Center for Celiac Research to raise money for Celiac Disease or bring them to one of our support group meetings and they will be sent to the Center.
Philly Swirl is donating 50 cents to the Center for Celiac Research for each UPC code and $1.00 if products are from Costco. In Tucson, Philly Swirl Popsicles are only available at Costco or at Wal-Mart Super Centers. This is a great step forward in food labeling, but it is an expensive process for Philly Swirl. In order to continue with the labeling of their gluten-free products, they need to know that there are many Celiacs out there.
Feel free to send an e-mail to Alex Plotkin and let him know your appreciation at firstname.lastname@example.org. Philly Swirl Popsicles were available to sample at the Celiac Walk and if you did not have a chance to try them, they will also be available at the May 22 meeting.
UPC bar codes can be mailed to: Center for Celiac Research, CFCR – PhillySwirl, 22 St. Greene St., Box 104, Baltimore, MD 21201.
A step back: Kroger is discontinuing some of their gluten-free products in order to make room for new gluten containing "low-carb" products. Kroger labels their chocolate and tapioca puddings as "gluten-free" and it can be found at Fry's or Albertson's. While these puddings may not be affected, other gluten-free products will be.
Let Kroger know that there are Celiacs out there who appreciate them labeling and providing gluten-free products. Call Kroger at 1-866-221-4141 or e-mail investors @kroger.com.
GF Lemon Bars, tart and tasty
1 ½ C. GF flour
1 ½ tsp. xanthan gum
½ C. powdered sugar
¾ C. (1 ½ sticks) chilled butter, cut into 1 Tbs. pieces
3 C. granulated sugar
1 C. plus 2 Tbs. fresh lemon juice
½ C. GF flour
½ tsp. xanthan gum
3 Tbs. powdered sugar (optional)
Preheat oven to 325 degrees. Combine 1 ½ cups flour, ½ cup powdered sugar and the 1 ½ tsp. xanthan gum. Add the dry mixture to the butter in the work bowl of a food processor.
Pulse until crumbly (but not blended). If you don't have a food processor, combine these four ingredients in a mixing bowl until crumbly or use a pastry knife to blend.
Press the mixture in the bottom of a 9-by-13-inch baking pan. Bake for 20 to 25 minutes, until golden brown. Remove pan from oven and reduce oven temperature to 300 degrees.
Whisk the granulated sugar and eggs in a medium bowl until blended. Stir the xanthan gum into the flour and then stir all into the egg mixture. Add all the lemon juice and mix thoroughly. Spread evenly over the baked layer and bake for 40 more minutes at 300 degrees or until set. Sprinkle with powdered sugar if desired. Cool on a wire rack for 30 minutes and then cut into 20 bars.
Developed by Shirley Curtis and Mary Louise Catura. Taste tested at
Mary Louise reveals CD Walk cake recipes
By Mary Louise Catura
I had several inquires about the food at the CD Walk on April 24. That inspired me to start a food column for Celiac Digest although it may be only a sometime thing -- not every issue. I decided to call it "Baker-at-Large" (getting larger with all the good food!).
Speaking of the Walk, I want to convey a sincere “Thank you” to all of you who helped at the food table at the walk especially Jeanette Sather; Mary Massorati; Esther Hopkins; Cleo Anderson; Laurie Kreidler, and Jeanine Faidley on the coffee table.
Back to baking. First, to answer the questions that inspired the column: The food at the Celiac Walk was all donated. When I offered to do the baking, I had no idea what I would get. The Walk committee selected the manufacturers. Here’s what I did with the products I received.
The muffins were from Sylvan Border Farm in the form of a pancake and waffle mix. The bag yielded approx. 2 cups of dry mix. To this I added 1 cup of muffin mix. Any brand will do. To this 3-cup dry mix I added: 3 eggs; 6 Tbsp of oil and butter mixed together: 1 cup of orange juice; the grated rind of 1 orange; and 1 tsp vanilla.
Bake 15 min in the miniature muffin cups till lightly browned.
The blueberry muffins came from the same mix. Omitting the orange rind and juice, I added water and 1 cup of frozen wild blueberries. (The wild blueberries are much smaller than the regular ones.)
The brownies were from Gluten-Free Pantry’s Truffle Brownie mix. I followed the directions on the package and then added chopped walnuts, less than 1 cup per batch.
Mexican Wedding Cakes
The "to-die-for" Mexican Wedding Cakes were from Marlene's Mixes. PO Box 1821 Whitehouse TX (no zip code listed) Phone# (903)-839-3892 .They are called Marlene's Tea Cakes. I added chopped pecans.
I will attempt to bulk-purchase Marlene's Mixes for sale at our meetings but need to wait for a response.
If you like to bake from scratch you might like to try teff flour. At one time, we were cautioned not to use teff because it was contaminated with wheat in the milling process. Well, no more. A plant in Idaho raises and mills it gluten-free. I've been using it in my bread and I like it so well!!
For $20.00 including shipping they will send you a starter package of two one-pound packages of teff flour, one ivory and one dark, and two one-pound packages of ivory and dark cereal (needs to be cooked). They also send you recipes. If you want more background on teff, you can find it in the little book we sell at the meetings, Great Grains. Reach the Teff Company at PO Box A, Coldwell, ID 83606, and 208-455-0375, Teffco @earthlink.net
All requests for recipes will be honored if at all possible. Happy baking!
(Mary Louise Catura is a talented baker who is also the Roundtable Forum chairperson. By instituting the Baker-at-Large column, she will be sharing her baking skills with the rest of us.)
Health diary a must for Celiacs
By Jan Terry, RN
It is important to keep a diary of what tests are done, when they were done, what lab at what address drew them, and what doctor ordered them.
I jot down the acronyms that the doctor checked on my lab slip in my diary. It is especially important to remember which lab tests are borderline and/or abnormal.
Ask your doctor to give you a specific number for any borderline or abnormal tests and jot those down in your diary. Ask the doctor what follow-up they require and make a note of that.
If you are seeing a specialist, ask that office to get the lab results from your primary care doctor. Call again a few days before your appointment to make sure that lab work was sent to the specialist. If you are at your primary care doctor’s office, you can ask them for a copy of your lab work so you can hand-carry it to the specialist.
Take your diary to all doctor visits to use as a reference. The better historian you are, the better the doctor will be able to care for you, and avoid re-ordering tests that you have already had and you avoid the inconvenience and discomfort that goes along with that. If you are traveling, take your diary with you, and if your lab work was abnormal, carry the latest copy of that with you as well.
Agenda & Officer Slate
9:00 a.m. Coffee
9:30 a.m. Elections and Business Meeting
10:00 a.m. Food Fair
Slate of Officers:
Past President- Jeannine Faidley
President- Georgina Ruble
President-Elect- Cleo Anderson
Vice President/ Membership-Lisa Lopez
Secretary- Hetty Pardee
Treasurer- Sue Beveridge
Members-at-Large: Brenda Bryson
Keep your doctor current. Share this guide to Celiac Disease aftercare
Diligent aftercare for people who have been diagnosed with Celiac Disease is the key to proper monitoring of the gluten-free diet and to the early detection of many other illnesses common to persons who have suffered unknowingly for years with Celiac Disease.
After the diagnosis, Celiac aftercare is very important according to Dr. Stephen Holland, an Illinois gastroenterologist. “Yearly check ups are a quality control. The more a doctor knows about celiac the more they know you should get a yearly checkup. It is important to get one of the antibodies tested yearly to look for unknown gluten exposure and to confirm good dietary adherence, as well as to check thyroid function, look for diabetes, and other problems.[ www.napervillegi.com/celiac/celiacfollowup.html is the URL for the following information.]
Dr. Holland’s ‘cheat sheet’ for Celiac aftercare:
• Sensory Exam (to rule out neuropathy)
• Lymphadenopathy [*check to see there is no disease of the lymph nodes]
• CBC [*complete blood count]
• LFT's [*liver function tests]
• B12, Folate [*Is a red crystalline substance extracted from the liver which is essential for formation of red blood cells. B12 and folate may be deficient due to inadequate intestinal absorption, resulting in anemia]
• U/A [*urinalysis to check for urinary tract infection and diabetes]
• FBS [*fasting blood sugar to check for diabetes]
• TFT's [*thyroid function tests]
• PT [*Prothrombin time, is valuable for screening for coagulation disorders or to monitor therapy with coumadin anticoagulants – in other words, how fast your blood clots.]
• Celiac Antibody: Dr. Holland says, “The Celiac antibody to be followed long term is the antibody that was most strongly positive in the patient at initial diagnosis. The whole panel is not to be repeated for routine follow-up, just the one antibody selected initially for follow-up testing. In general, the endomysial antibody should not be tested as the follow-up test since it is more expensive and is generally not as quantitative.”
*Explanations in italics courtesy of Jan Terry, RN
Dr. Holland strongly suggested that the Celiac Digest include a link to the American Academy of Family Physician’s article for doctors on how to detect celiac disease in patients. That URL is http://www.aafp.org/afp/980301ap/pruessn.html . The Celiac Digest is including selections from that site for your physician’s use.
Detecting Celiac Disease in Your Patients - HAROLD T. PRUESSNER, M.D
Celiac disease is a gluten enteropathy occurring in both children and adults. The condition is characterized by a sensitivity to gluten that results in inflammation and atrophy of the mucosa of the small intestine. Clinical manifestations include malabsorption with symptoms of diarrhea, steatorrhea, and nutritional and vitamin deficiencies. Secondary immunologic illnesses, such as atopic dermatitis, dermatitis herpetiformis, alopecia and aphthous ulcers, may be the primary presentation.
Prevalence: The magnitude of the prevalence of celiac disease has only recently been recognized. A large multicenter study,1 promoted by the European Society for Paediatric Gastroenterology and Nutrition (ESPGAN) and involving 36 centers from 22 countries, has provided important information on the incidence of celiac disease. The average incidence was found to be one case in every 1,000 live births, with a range from one in 250 to one in 4,000. When the age of diagnosis was included in the incidence density of celiac disease, the predicted rate was one case in every 300 newborns. Among blood donors, the prevalence of asymptomatic celiac disease was found to be as high as one in 266.
In the United States, people with the same genetic background as the European population in that study would be expected to have a similar incidence of celiac disease. To determine the prevalence of celiac disease in the United States, 2,000 healthy blood donors were screened for IgA and IgG antigliadin antibodies.4 Those with elevated levels were tested for antiendomysial antibodies. The prevalence of elevated antiendomysial antibody levels in healthy blood donors in the United States was found to be 1:250. This rate is similar to the prevalence in Europe, where subsequent small intestine biopsies have confirmed celiac disease in all patients testing positive for antiendomysial antibody (positive predictive value: 99 percent).5 The authors of the U.S. study4 conclude that data suggest that celiac disease may be greatly underdiagnosed and is relatively common in this country. …
Pathogenesis: Normally, ingested food does not elicit a local or systemic immune response. Ingestion of protein down-regulates the intestinal immune response to that protein. This phenomenon is known as oral tolerance.7 In patients with celiac disease, the immune system is abnormally activated by gluten, specifically the gliadin portion of wheat protein, and prolamines (insoluble proteins) in rye, barley and oats.8 Thus, celiac disease is a genetic, immunologically mediated, small intestine enteropathy in which mucosal villi are destroyed by cellular and humoral-mediated immunologic reactions to gliadin protein.9 The loss of functioning villi limits the ability of the small intestine to absorb nutrients, thus adversely affecting all systems of the body. The immunologic response to gluten may also occur secondarily in other bodily tissues, an example being dermatitis herpetiformis.
Studies of patients with celiac disease using molecular techniques demonstrate a strong association with specific HLA class II genotypes. Approximately 95 percent of patients with celiac disease have a particular type of HLA DQ alpha and beta chain encoded by two genes, HLA-DQA1 0501 and HLA-DQB1 0201.10 If people genetically predisposed to celiac disease do not ingest gluten, they have no manifest illness. Delaying ingestion of gluten products through breast feeding or dietary habits may change or delay the onset of disease.11 Viral exposures may trigger an immunologic response in persons genetically susceptible to celiac disease; this occurs with adenovirus type 12, which shares a sequence of eight to 12 amino acids with the toxic gliadin fraction.12
Infancy: During the first year of life, an infant may manifest celiac disease with intermittent vomiting, diarrhea, growth delay and failure to thrive. The incidence of this early classic presentation in infants has decreased. However, to prevent significant growth problems in infants, confirmation of celiac disease is important13 (Figure 3).
Childhood: Children with celiac disease may present with short stature, anemia, hepatitis, epilepsy and other extragastrointestinal conditions. With age, these presentations become more subtle. In one study13 of a group of school children screened for IgA antigliadin antibodies, positive titers were found in 19 of the children. Endoscopic biopsies were performed in 18, and villous atrophy was found in 12. None of these children had shown characteristic symptoms of celiac disease. The most frequent of their symptoms were abdominal pain, aphthous stomatitis and atopic dermatitis (Figures 4 and 5).
Angular cheilitis (Figure 6) and recurrent aphthous ulcers (Figure 7) are frequent in children and adults with celiac disease.13 These clinical findings should prompt the physician to consider the diagnosis of celiac disease.
Young Adults: The initial presentation of celiac disease in patients in their 20s and 30s may be dermatitis herpetiformis. This condition usually appears as clear or blood-tinged vesicles symmetrically distributed over the extensor areas of the elbows, knees, buttocks, shoulders and scalp (Figure 8). Intense pruritus and/or burning sensations in the area occur hours before the onset of the vesicle. Dermatitis herpetiformis flares after consumption of foods containing a high amount of gluten.
Small intestine biopsies from patients with dermatitis herpetiformis reveal features identical to those found in patients with celiac disease.14 In a study15 of 212 patients with dermatitis herpetiformis who were managed over a period of 25 years with a gluten-free diet, several benefits of dietary therapy were found, including (1) the patients' need for medication was reduced or abolished, (2) the enteropathy resolved and (3) patients experienced a feeling of well-being after beginning the diet.
In a study16 of the occurrence of malignancies and the survival of 305 patients with dermatitis herpetiformis from 1970 to 1992, it was indicated that the incidence of non-Hodgkin's lymphoma is significantly increased in patients with dermatitis herpetiformis. The results also confirmed no increase in mortality in patients with dermatitis herpetiformis who are treated with a gluten-free diet.
Adults : Malabsorption. The varied signs and symptoms of malabsorption may be caused by celiac disease or many other diseases. Mild malabsorption may be asymptomatic. With its gradual onset, the classic manifestations of flatulence and bulky, greasy and foul-smelling stools may not be recognized by the patient as signs of celiac disease. Malabsorption should be suspected in any patient with weight loss and diarrhea, and the signs and symptoms of specific vitamin or nutritional deficiencies. The latter include visual disturbances, neuropathy, anemia, osteopenic bone disease, tetany, hemorrhagic diathesis or infertility.
In celiac disease, the clinical symptoms are determined by the severity and the proximal-to-distal extent of the intestinal lesions. Symptoms often manifest in childhood and then disappear, only to recur in adulthood. In some patients, the disease presents initially in their 60s and beyond. ...
(Full text, charts and illustrations available at http://www.aafp.org/afp/980301ap/pruessn.html )