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
- Sept. meeting features speaker on DH
- RT Food Bank donation requested
- Undiagnosed CD expensive
- Chapter 15 Notes
- Bone health and CD
- Outreach: Arizona School for the Deaf & Blind
- Outreach: Oro Valley Pediatrics
- Sept. 26th general meeting location
- A private DIY test for Celiac Disease risk
- Mark your calendar
- GF at Boston’s Gourmet Pizza
- Possible wheat link with Type1 Diabetes
Sept. meeting features speaker on DH
September’s general meeting will feature local dermatologist Gerald Goldberg who has agreed to give SACS their first-ever lecture on Dermatitis Herpetiformis (DH), the skin manifestation of Celiac Sprue. Many SACS members suffer from DH, so we have been seeking a qualified speaker for years. This general meeting is on Saturday, September 26th, 9:00 to noon, at the Pima Community College District Office Campus, 4905 E Broadway, Bldg C. (located just east of Swan, directly behind TGI Friday’s. – Please see map p. 6 or our website at www. SouthernArizonaCeliacSupport.org)
"I would be happy to give this lecture since I have a vested, personal interest," states Dr. Goldberg. His wife Barbara is a member of SACS and signed up to help at the GF Food Faire in May. Dr. Goldberg was able to stop by for a while and was "very impressed" with the scope and organization of the GFFF, including the Medical Advisory Board table.
We are really looking forward to Dr Goldberg‘s lecture; come prepared to ask questions as there will be a question/answer period after his presentation.
Dr. Goldberg is internationally recognized as a dermatologist with unique experience in laser surgery. He has published widely in medical literature, lectured nationally, and internationally on a variety of laser related topics. He also speaks French and Spanish. Currently Dr. Goldberg is certified in more than 25 laser modalities; he brings his patients expertise based on more than 18,000 laser surgeries to date.
Dr. Goldberg graduated cum laude from Princeton University in 1973. In 1978, he obtained his medical degree from the State University of New York at Syracuse, where he was elected to the Alpha Omega Alpha Honor Society. He completed his residency in Pediatrics in 1981 and a fellowship in Dermatology in 1983. Dr. Goldberg is an Associate Clinical Professor of Dermatology and Pediatrics at the University of Arizona Health Sciences Center. He and his wife have two children who are both entering health care professions.
Don‘t forget to bring your GF goodies to share and maybe plan to purchase some raffle tickets to help support SACS. The "meet and greet" portion of the meeting will be from 9-9:30 with the presentation starting after that. (If you wish to bring a GF snack, remember to bring the label, the box, or an ingredient list to accommodate those with multiple food restrictions. Coffee and tea are provided.)
RT Food Bank donation requested
SACS Roundtable has been meeting at the Ward 6 City Hall facilities for free for several years now. Recently, the building managers asked if each Roundtable participant could bring a non-perishable food item to donate to the Community Food Bank, http://communityfoodbank.com/
The donation does not have to be GF but it certainly can be as that might be one way to educate the Community Food Bank about GF diets. Children and the working poor make up the majority of the Food Bank‘s clients.
SACS‘ Roundtable is a popular monthly meeting for anyone following a GF life-style. It is held at 1 pm the fourth Wednesday (Sept. 23 this month) of each month, January through October at the Ward 6 City Hall, 3202 E. 1st St.. If you cannot bring a food donation, you are still more than welcome to attend.
Undiagnosed CD expensive
Peter HR Green, M.D., Professor of Clinical Medicine and Director, Celiac Disease Center at Columbia University Medical Center, had this to say about the study (Journal of Insurance Medicine, 2008;40:218-228) and the economic benefits of increased diagnosis of celiac disease: "We now have evidence that the increased awareness and diagnosis of celiac disease would benefit not only the patients but would result in health care costs savings."
Celiac disease occurs in genetically susceptible individuals due to the development of an immune response to gluten, the protein component of wheat, rye and barley. Studies have demonstrated that celiac disease occurs in about 1 percent of the U.S. population; however, most people with this condition remain undiagnosed. Those in whom it is diagnosed have a long duration of symptoms prior to diagnosis.
Celiac disease is associated with the development of osteoporosis, anemia, a host of associated autoimmune conditions as well as several different malignancies.
The recent study that examined a large managed-care database revealed reduced health care costs after the diagnosis of celiac disease. The reductions in costs were attributable to decreasing trends in utilization of office visits, laboratory tests, diagnostic imaging and endoscopy procedures in those diagnosed with celiac disease.
As a result of the study, "there needs to be greater physician education in the various modes of presentation and manifestations of celiac disease and more use of the widely available screening blood tests that detect the disease," Dr. Green said.
SACS, through its outreach educational programs, is working to make more and more medical professionals aware of the wide-spread prevalence of CD. SACS uses Green‘s symptom sheet to screen for possible CD
Member Lisa Lopez welcomed a baby girl, Lyssabella Renee, on July 7th of this year. Lyssabella came into the world at 6.6 pounds, 18 ˝ inches long and is her mother‘s long-awaited blessing.
These empty vials are used by a free clinic in Mexico to dispense bulk medicine to their patients.
Contact Pat Hirsch 744-3862 for more information.
Chapter 15 Notes
- Bring the bar code of a GF product you‘ve purchased at one Fry‘s store, and the manager of any other Fry‘s store can see if the product is available at the warehouse and can request stocking for his/her store. It‘s a good way to help store managers learn about GF products. Try it at your local supermarket.
- All McDonald’s flavored coffees are GF according to McDonald‘s corporate office.
- Starbucks discontinued its gluten-free Valencia Orange Cake. Some branches might have GF energy bars available, but there are no fresh-baked pastries.
- Program your iPhone to locate and direct you to restaurants that can accommodate food restrictions for any one or a combination of the 10 most common allergens. http://www.allergyfree passport.com/apps/iEatOut.html is a site where you can buy the application. You can download a free iPhone application for just GF dining at http://appshopper. com/lifestyle/gluten-freed-gluten -free-dining-for-health-and-celiac (remove spaces to make links work)
- The National Institute of Health has an online site http:// dietarysupplements.nlm.nih.gov/ dietary/ which offers information about label ingredients in more than three thousand selected brands of dietary supplements, the contact information of the manufacturer and the independent testing verification conducted for each.
- CSA/USA: 877.272.4272 9 a.m. to 4 p.m. Central Time. Their URL is: www.csaCeliacs.org.
- Membership changes? Notify us via the website or call 520.495.4829. Email the website if you wish to be added to or removed from our email list.
Bone health and CD
By LINDSEY PEARSON, NMD
Osteopenia and osteoporosis are two conditions where bone mineral density is lower than normal. Both are diagnosed by a DEXA (dual energy x-ray absorpiometry) scan, which uses x-rays to measure bone density. Most DXA scan measurements are done in three areas: the lumbar spine (L1-L4), the femoral neck, and the hip. The results of the scan are reported for each sample area. The result that is used clinically to determine the risk for fractures is referred to as the T-score. The T-score is a standard deviation above or below the mean bone mass density for young normals. For each minus one (-1) standard deviation decrease in bone density, the risk for fracture doubles exponentially. Therefore, a T-score of -1.0 will double the risk of fracture while a T-score of -2.0 will be four times the risk. As a rule of thumb, a T-score of -1.0 to -2.5 indicates increasing degrees of osteopenia and less than -2.5 is consistent with osteoporosis. Informally, osteopenia is less severe than osteoporosis and can develop into osteoporosis.
Osteopenia and osteoporosis are often found in men and women, young and old, who have celiac disease (CD). One article states that as many as 70% of CD patients may have decreased bone mineral density (BMD). As I have stated in other articles, malabsorption is the root cause to many associated diseases of CD. When the gut is inflamed and villous atrophy is present, the ability to absorb nutrients decreases dramatically. This holds true for the nutrients that are essential for bone health: vitamin D, vitamin K, and calcium. Without these necessary nutrients, patients are at risk for developing osteopenia or osteoporosis. Adherence to a gluten-free diet increases the probability of reversing villous atrophy and, thus, increasing nutrient absorption.
In addition to celiac disease, other risk factors for osteopenia and osteoporosis include being female, personal history of fracture, family history of hip fracture, glucocorticoid (prednisone) use, tobacco and alcohol use, thin body frame/decreased BMI, hypogonadism (menopause in women and decreased testosterone levels in men), high phosphate use (soda pop), diabetes mellitus, hyperparathyroidism, gastric bypass surgery, and certain other medication use. DEXA re-testing should be done every two years for people with these risk factors.There are several research articles discussing declining bone health in people with CD and the importance of screening for both youth and adult CD patients.
In addition to DEXA scans, I find it prudent to check the serum levels of vitamins D and K in patients with celiac disease and colitis conditions. Both vitamin D and K are fat soluble vitamins that are important in bone health and are affected by intestinal disorders. In my general patient population, I noticed 75 to 80 percent of all my patients who have had vitamin D levels drawn to have low-normal to deficient levels.
Though I rarely find people deficient in vitamin K, I do find women with osteoporosis with and without CD to have low-normal vitamin K levels. For vitamin D testing, the laboratory test you want to talk with your physician about is the 25-hydroxy vitamin D3 serum test. Twenty-five hydroxy vitamin D3 is converted in the kidney to an active form of the vitamin. Testing this form of vitamin D is the most accurate way to get a snapshot of how much vitamin D is in your body. Vitamin K levels can be checked by a vitamin K serum lab test which tests for total vitamin K levels.
If you are found to be deficient in vitamins D or K, supplementation is necessary though either oral supplementations or increasing foods rich in vitamin D or K. Food sources of vitamin D include fish oils, fatty fish such as herring, salmon, sardines, and tuna, and whole eggs. Vitamin K food sources include spinach, cabbage, kale, broccoli, cauliflower, brussels sprout, avocado, kiwi fruit, and parsley. Most all of these foods are also high in calcium! I have found that the liquid form of vitamin D3 acts quicker than dry tablets or a capsule in raising serum levels. Before starting supplementation or increasing foods rich in vitamin K, consult your physician as vitamin K can interfere with blood clotting. Vitamin K2 supplementation is found as one of two forms, either MK-7 or MK-4. If you are able to supplement with vitamin K2, MK-4 has been shown in research studies to reduce the risk of lumbar fractures significantly over MK-7. For more information on supplementation or dietary advice ask your physician or nutritionist. As always: READ T HE LABELS FOR GLUTEN FREE PREPARATIONS.
To conclude, bone health in people with celiac disease affects both the young and old. People with celiac disease should be screened for osteoporosis and people with osteoporosis should be screened for celiac disease. Proper and vigilant monitoring of bone density, vitamin D and K levels, and tTG levels along with adherence to a gluten free diet will reduce the risk of osteopenia and osteoporosis in people with celiac disease.
Outreach: Arizona School for the Deaf & Blind
On August 6th, SACS’ Cheryl Wilson, Dr. Lindsey Pearson and Pat Hirsch traveled to the Arizona School for the Deaf and Blind to speak to about a dozen school nurses on the subject of recognizing and diagnosing CD.
After the presentation by Cheryl, Dr. Pearson gave technical information about how the blood tests for CD have become more sensitive and more sophisticated. He also talked about how a person can be "gluten intolerant" and still not have CD even though the treatment—living GF—is the same.
After the presentation, there was a lively question/answer period with Dr. Pearson and Cheryl covering all the inquiries from an obviously interested audience.
These 12 nurses were given educational packets and encouraged to duplicate the material to share with others. Thus, reaching 12 people suddenly becomes at least 120 people who now know about CD. One nurse, upon seeing Cheryl point out the varied symptoms we have displayed on our educational banners, said quietly, "I have most of those symptoms".
Volunteers from our group are always welcome to come along to help set up and to also contribute in the question/answer sessions from their own experience.
SACS would also like members to suggest where we can go to give outreach presentations. While the Gluten Free Food Faire is perhaps our most visible educational venture, SACS also wants to make a difference by meeting with health professionals in small or large groups. Contact any board member at any time if you have suggestions for other outreach venues.
Outreach: Oro Valley Pediatrics
On July 28th of this year, SACS gave an educational presentation to four doctors at Oro Valley Pediatrics. Drs. Diana Honebrink, Carl Roberts, Pamela Villar, and Christa Whittard gave up their lunch hour to listen to a presentation regarding CD presented by SACS‘ president, Cheryl Wilson.
Medical Advisory Board Members Priya Abramian, DDS, Lindsey Pearson, NMD and Nancy Schuller, RD expertly fielded questions from the doctors and added professional credibility to the presentation.
Your continued membership and support makes these educational outreaches possible. Each doctor was given a packet of SACS‘ educational materials and new ideas on how to diagnose patients and to help children and parents with CD comply with the GF diet.
Sept. 26th general meeting location
A private DIY test for Celiac Disease risk
Prometheus Labs is offering the first =do-it-yourself‘ genetic saliva-based test kit to find out if you have the two most common genes responsible for CD. With MyCeliacID, you do not need a doctor‘s prescription, and you do not need to involve your health insurance company, either.
The test is based on saliva taken from the test subject, and results are available in a week, reported directly to you. This test does not tell you if you have CD; it merely tells you if it is possible for you to have it now or develop it later. You can be on a GF diet and it will not affect the outcome.
Each test kit sells for $329, and the purchase can be made using Visa, MasterCard or American Express. You can purchase and get more information online at https://myceliacid.com/default.aspx. (Not available to New York State residents and it can only be ordered online. P hone support is available, but the test must be ordered online.)
Prometheus Labs is a highly respected medical laboratory that makes possible the free CD blood screens we offer each year at the Gluten-Free Food Faire.
Mark your calendar
- Sept. 23: 1: p.m. Roundtable, Ward Six City Hall at 3202 E. 1st
- Sept. 26: 9:00 a.m. to noon General Meeting - Pima College
- Oct. 9: Lunch Bunch, 11 a.m. to 10 p.m. at Tucson Meet Yourself food court vendors. Contact Mia Hansen 520.370.0588 or mia@CulturalExchangeCouncil.org for location, times and parking information if you are not on our emailed information list.
- Oct. 28: 1: p.m. Roundtable, Ward Six City Hall at 3202 E. 1st
- Nov. 7: 9:00 a.m. to noon General Meeting - Pima College
GF at Boston’s Gourmet Pizza
About 20 SACS‘ members and guests met for lunch, September 11th at Boston‘s Gourmet Pizza, at 5825 W. Arizona Pavilions Drive. They are on the west side of the I-10/Cortaro Road interchange on Tucson's far NW side. GF beer is available.
If you want gluten-free pizza in Tucson, Boston‘s is the place to go. They have a wide variety of GF pizza, and they are not stingy with the toppings. Boston‘s chef explained how he prevents cross contamination and allowed us into the kitchen to video him.
The Lunch Bunch October 9th will be downtown at Tucson Meet Yourself. Colleen Beaman is working with vendors there so they can offer safe GF food and understand cross contamination issues. This is a great opportunity to make ethnic food vendors aware of GF eating issues, thus expanding our dining-out choices.
See Chef Rumaldo Cerda make GF pizzas by going to http://www.youtube.com/watch?v=hPtH6xDAmq0 (video produced by SACS member Jerry Heintze)
Possible wheat link with Type1 Diabetes
In a Canadian study involving 42 patients with Type1 Diabetes, (an autoimmune disease unrelated to weight, food choices or lifestyle) nearly half of the subjects had an abnormal response to wheat proteins. Scientists at the Ottawa Hospital Research Institute and the University of Ottawa, who conducted the study, found that the patients' over-reaction to wheat is linked to genes that are associated with Type1 Diabetes.
The findings have two implications. First, testing for sensitivity to wheat could be a way of establishing whether a person is predisposed to acquiring Type1 Diabetes. Second, people at risk for Type1 might forestall its onset by eliminating wheat from their diet.
The presence of wheat generates a response by the body's immune system in the form of attacks by T cell defenders. The Canadians believe that this constant over-reaction puts a strain on the immune system, eventually unbalancing it to the point that it attacks other parts of the body, including the pancreas.
Given the small number of patients in the study, lead researcher Dr. Fraser Scott said that more research would be needed to confirm the link between sensitivity to wheat and the predisposition toward Type1 Diabetes. He noted, however, that previous research with lab animals has shown that a wheat-free diet reduced the risk of developing this type of diabetes.
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