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
- GF Food Faire and CD testing May 9
- Celiacs often vitamin deficient
- Free CD test a health saver
- Chapter 15 Notes
- B-Vitamins and Celiac Disease
- MAB member on a mission to raise medics’ CD awareness
- Mark your calendar
- Volunteers make it happen
- Membership renewal due July 1
- 2009 GF Food Faire location
GF Food Faire and CD testing May 9
Last year SACS’s Gluten-Free Food Faire attracted a record crowd of more than 650. We expect 2009’s GFFF to be bigger and better than ever. Don’t miss this on May 9th, 9 am to 2 pm at the Family Life Center of Christ Community Church at the NW corner of Pantano & Kenyon (see the map on page 6 or our website)
Instead of 100 tests kits for free celiac screening, this year we can offer 200 free CD tests. There will probably be kits available for walk-ins, but it’s best to reserve your time slot with the application form on our website or as printed in the last newsletter. Along with the free CD screening, members of the MAB will be there to answer your specific questions in person, one-on-one.
In addition to the Lotus Garden and Tucson Tamale Company restaurants, we will have vendors personally coming from Pamela’s, Gluten-Free Creations Bakery, Organic Bistro, Mixes from the Heartland, Chebe, Mindy’s Miracle Munchies, Arbonne, Sunflower Markets, and New Life Health Centers, along with others. There are many more vendors who are sending product samples.
Chef Rachel Albert-Matesz will be there autographing copies of her Ice Dream book, as well as handing out GF samples using those recipes and they are delicious. All of these recipes are dairy free as well as GF.
Cel-Kids will have a jumping castle and activities to keep children busy, so be sure and bring the kids along.
Of course, we’ll also have raffles for GF goodies, a silent auction, a baking demonstration, and Gene Spesard’s ever popular informational booth on GF Dining in Tucson.
This is the one meeting where you don’t bring GF goodies to share. Just come and enjoy sampling the newest and best in GF food and CD health information. Everyone is welcome and there is no charge.
(Please contact any board member if you are able to help with this event.)
Celiacs often vitamin deficient
More than 80 people attended the March 28th general meeting to hear Dr. Lindsey Pearson’s presentation on the difference between celiac disease and gluten intolerance. Basically, CD is an auto-immune response to gluten and gluten intolerance does not involve the immune system. Both are serious and both are treated by a GF diet. There is no cure; there is only management.
According to Dr. Pearson, 10% of people with CD have a K1-vitamin deficiency. He also mentions that GI inflammation produces more cholesterol since it’s part of the body’s defense mechanism. Since the underlying cause of heart disease and high cholesterol is inflammation, putting a patient on statin drugs will only lower the cholesterol numbers but will not fix the underlying problem.
A possible new tool for assessing inflammation and internal damage is the use of thermal imaging which shows ‘hot spots’ in the body. Dr. Pearson showed us a thermal image of a patient who had significant intestinal inflammation which he treated with six weeks of anti-oxidant and vitamin therapy delivered intravenously.
Of special interest to post menopausal women, who are worried about their bone health, was recent information he gained from a women’s health conference. According to Dr. Pearson, D3-vitamin is more important than calcium for strong bones. However, 85% of his female patients –not just the ones with CD – have low D3-vitamin levels.
D3 is fat soluble and is used by our bodies as a type of steroid hormone. D1-vitamin has little effect. He cautioned that it is hard to get enough D3 –vitamin, even in sunny Arizona, as the body simply cannot make enough to meet its needs. The powdered Dvitamin supplements are ‘useless’ to the body, and he recommends that we use oil-based D3-vitamin drops which are continually refrigerated and protected from the sun. Such supplements must be fresh and consumed within 45 days of purchase to do much good. Some other points Dr. Pearson made in his talk:
- People with food allergies/ intolerances tend to crave the very foods that are harmful to them.
- People without the ‘Celiac’ genes CAN have CD. Elevated tTg levels have been found in symptomatic patients who did not have either DQ2/8.
- Larazotide acetate, the drug that Alba has on the ‘fast track’ for FDA approval will not cure CD nor will it make it possible for celiacs to safely ingest gluten. The primary function of the drug will be to reduce inflammation of the gut after accidental gluten exposure.
SACS is very grateful for Dr. Pearson’s presentation and the time he took to patiently answer every question we had for him.
Free CD test a health saver
My mother was diagnosed with celiac disease in 1976, right after my older brother was born. Therefore, throughout my childhood, I ate the same gluten-free diet my mother consumed. None of us thought we could have CD because we had never had any symptoms. So when I moved away from my mother, I began eating all the gluten-filled delights the world had to offer! I was free! Then, my grandfather was diagnosed with CD and we realized that the chance of my siblings and myself having it was higher than we previously believed.
In May of 2008, my mother told me about the free screening for CD sponsored by SACS at their Gluten-free Food Faire. I wasn’t going to get tested because I had never experienced symptoms, but my sister wanted us to get tested, so we went. I was one of two people who had a positive screening that day. At first, I thought it was a mistake, so I had the test (called a tTG) again. It was positive again.
Although it has been a transition, I blessedly grew up cooking and eating gluten-free, so I knew how to do it. People ask me why I eat gluten-free when I don’t even have symptoms. The answer to this is simple; if you have symptoms, there has been permanent damage to your intestines. Also, if I kept eating gluten, I would increase my chances of developing diabetes and a whole host of other health issues.
Of course, the soft, freshly baked gluten-filled breads and pastas, cakes and cookies look incredible, but it is not worth poisoning my body to have those things. Not to mention, there are so many gluten-free treats available now, it is much easier to live a glutenfree life!
I encourage anyone to take advantage of this free screening, even if he or she is asymptomatic, because preventing the damage is the best way to remain as healthy as possible.
Chapter 15 Notes
- Hain-Celestial Seasoning has some new frozen entrees, which are certified GF. They are: Asian Curry Noodles, Fettuccini Alfredo, Homestyle Rice and Vegetables, Lemon Basil Chicken, Pasta Primavera, and Savory Rice Pilaf.
- Schwan’s is offering a GF entrée to their customers. It’s the Triple Play Turkey Meatballs and Pasta. See http://www. schwans.com/ for more info.
- Starting May 5th, Starbucks will offer the Gluten-free Orange Valencia Cake with Almonds. The actual cake will come individually wrapped to prevent cross contamination. Ingredients: whole eggs, Valencia orange pulp, almonds, sugar, orange peel, GF baking powder, and orange oil.
- General Mills is making more of the Chex cereals glutenfree. In addition to Rice Chex, soon Corn , Honey Nut , Strawberry, Chocolate , and Cinnamon Chex will be available in regular grocery stores by June 1st. Be careful to buy only the new boxes marked ‘Gluten-Free’.
- Betty Crocker (AKA General Mills) will be marketing three gluten-free cake mixes this summer. Look for Gluten-Free Yellow Cake Mix, Betty Crocker Gluten-Free Devil’s Food Cake Mix, Gluten-Free Chocolate Chunk Brownies, and Glutenfree Chocolate Chip Cookie Mix. Early reviewers have described the cakes as ‘awesome’.
- 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
B-Vitamins and Celiac Disease
By LINDSEY PEARSON, NMD
After my March 28th, 2009 general meeting lecture, I was very pleased to receive calls at my office, web form comments, and email with questions, comments, and inquiries on additional preventive and corrective nutritional therapy for celiac patients. Prevention and nutritional therapy is often lost in celiac care because most patients tell me the only treatment they receive is a gluten- free diet. The emphasis is put on the gluten-free diet and managing symptoms. It is true that a glutenfree diet is the best treatment for celiac disease (CD).
However, it is often forgotten by clinicians to further work up the patients and rule out comorbid conditions and assess the general health status of CD patients, especially those who are beyond their second decade of life. If a person was diagnosed with CD beyond the third decade of life, when they are in their thirties and older, the probability of developing nutritional deficiencies are greater than those diagnosed in their first and second decades of life since they went many years undiagnosed. It is imperative that we remember celiac disease affects the small intestine and, therefore, absorption of nutrients is impaired. The book Recognizing Celiac Disease: Signs, Symptoms, Associated Disorders & Complications by Cleo J. Libonati is a perfect reminder that a gluten-free diet is only one part of celiac disease management.
To assist the members of the Southern Arizona Celiac Support Group (SACS) I am writing a series of articles focusing on diagnosing nutritional deficiencies, nutritional supplementation, and preventive approaches in managing concomitant symptoms and comorbid conditions of celiac disease. If you have any suggestions or articles you would like to be reviewed or commented on, please email me at LPearson@TucsonNaturalMedicineCenter.com I cannot provide medical advice via email, but am able to take suggestions on topics you want to learn more about.
The first article in the series will review an article passed on to me by Shirley Curtis regarding B-vitamins based on an article published in 2009 in Alimentary Pharmacology & Therapeutics. The article entitled “Clinical Trial: B Vitamins improve health in coeliac patients living on a gluten-free diet” studied the biochemical and clinical effects of B-vitamin supplementation in adults with long standing celiac disease. The researchers looked at total homocysteine (tHcy) levels to indirectly assess B-vitamin status. There is an inverse relationship between tHcy and B-vitamin levels. The lower the B-vitamin levels, the higher the tHcy levels.
The study used three of the nine Bvitamins: pyroxidine (B6), cyanocobalamin (B12), and folic acid (B9). It found that supplementation of these three B-vitamins for six months lead to a 34% decrease in tHcy levels and a significant improvement in wellbeing, notably anxiety and depressed mood. The researchers conclude “that adults with longstanding coeliac disease taking extra B vitamins for six months showed improved markers of vitamin B deficiency and significant improvement in general well-being.” They also suggested that B-vitamin supplementation should be considered in people advised to follow a glutenfree diet.
The findings of this article can be extrapolated for all people, not just people with CD. First what are Bvitamins? There are nine water soluble B-vitamins. B-vitamins are found readily in many foods, particularly cereals and grains, which are fortified in B-vitamins. This article focuses on homocysteine and the three B-vitamins that are involved with homocysteine levels are B6, B12, and folic acid (B9). B6 is naturally found in grains, meats, vegetables, and nuts. B12 is naturally found in meat, predominantly in liver and shellfish, eggs, and milk. Folic acid, sometimes referred to as folate, is found in spinach, turnip greens, lettuces, dried beans, sunflower seeds, liver, and baker’s yeast.
B-vitamins are water soluble vitamins, meaning the body does not store these vitamins like vitamins A, D, E and K, making them more liable to deficiency when not taken in adequate quantities. It generally takes people longer to develop vitamin A, D, E and K deficiencies because they are fat soluble and thus stored in the body, primarily in the liver. However, people with celiac disease tend to take in less fortified grains, nuts, and other processed foods fortified with B-vitamins due to the nongluten production methods. Celiac patients are at a higher risk of developing leaky gut syndrome and intestinal inflammation- gastritis- which decreases the absorption of Bvitamins and other nutrients, putting them at a higher risk of developing nutritional deficiencies than people without a GI disorder.
Secondly, what is Homocysteine? Homocysteine (Hcy) is an amino acid that is produced in the body and is not obtained from the diet directly. It is recycled into methionine or converted into cysteine by the B-vitamins folic acid (B9), pyridoxine (B6) and cyanocobalamin (B12). When a person is deficient in B-vitmains, homocysteine is not recycled nor converted, thus leading to elevated levels in the blood.
Clinically, high levels of homocysteine, and thus low levels of B6, B12, and folic acid, are correlated with higher risks of cardiovascular disease and osteoporosis. In addition to reducing cardiovascular and osteoporosis risk, B-vitamins are readily used in the nervous system, blood cell production, new cell production, and fetal development. B-vitamins have a direct influence on mood, wellbeing, and, thus, behavior. B-vitamins are referred to as the “stress vitamins” since they are utilized by the adrenal glands and nervous system. Adequate B-vitamin levels are essential for optimal wellbeing.
In my opinion, in addition to total homocysteine (tHcy) levels, celiac patients should have B6, B12, and folic acid levels checked directly, as well as the other five B-vitamins – and other nutritional markers! Hcy can be used as a screening test, however in diseases with known deficiencies, it is best to directly test the status of nutrients. These nutrient lab tests can be ordered by your primary care provider (PCP) through Lab Corp or Sonora Quest Laboratories and are often covered by healthcare insurance if medically necessary.
As a physician working with celiac patients and patients with other GI disorders, I suggest patients get tested before starting supplementation. Supplementing with one B-vitamin can mask deficiency symptoms of another B-vitamin and if certain B-vitamin levels are low, additional testing may be warranted such as intrinsic factor (IF) antibodies in B12 deficiency. IF is needed for B12 absorption. I have seen IF antibodies in patients with autoimmune diseases such as CD and Hashimoto’s thyroiditis. I stick to the general ideas of: if there is one autoimmune disease, such as CD, the odds of having another autoimmune disease tends to be higher and should get properly diagnosed before starting any treatment options.
MAB member on a mission to raise medics’ CD awareness
New MAB member Marguerite (Meg) Roop, R.N. has over thirty years experience in nursing – and had never heard of celiac disease until diagnosed with it four years ago.
This is why she sees it as her mission to educate health care providers about CD. Once health care providers are aware of the disease and all of its ramifications, more people will receive diagnoses.
Presently, Ms. Roop is an instructor at the Pima Medical Institute and will receive her Masters of Nursing Education degree this spring. She plans to make sure all her present and future students know about celiac disease.
While she provided valuable help with the blood draw from last year’s GFFF, this year she went the extra mile and organized every aspect of the blood collection for the 2009 free blood screening, from recruiting volunteers to collecting medical supply donations. SACS and Arizona celiacs are very grateful.
Ms. Roop regards noncompliance with the diet as a major problem that celiacs face. As she explains: “Following any diet is problematic in health care whether it is a weight loss diet, diabetic diet, cardiac diet or any other diet. Especially if the consequences of “cheating” are not immediate, it is difficult to ensure compliance. Food means more to people than nourishment; it involves many social and psychological factors which makes the whole issue of compliance very complicated.
In addition to that many of the gluten- free foods taste like cardboard or even worse. Also the food budget suddenly takes a dramatic jump as most gluten-free foods are quite pricey when compared to their normal counterparts. I find that for me compliance is induced by an understanding of the long term complications. Compliance was also enhanced for me when I was able to find foods that I actually liked. I still refuse to put into my mouth things that taste nasty or have the texture of sand.”
Mark your calendar
- May 8: noon, GF Lunch Bunch, Chantilly Tea Room, 5185 N. Genematas Drive RSVP to (520) 888-2935.
- May 9: 9:00 a.m. Gluten-Free Food Faire. Gluten-free food samples and information on living GF
- May 27: 1: p.m. Roundtable, Ward Six City Hall at 3202 E. 1st
- May 30: 7:30—11:30 Marana Care Fair, Marana Middle School, volunteers for SACS booth welcomed!
- June 12: noon, GF Lunch Bunch, location TBA
- June 24: 1:00 p.m. Roundtable, Ward Six City Hall at 3202 E. 1st
- July 22: 1:00 p.m. Roundtable, Ward Six City Hall at 3202 E. 1st
- Aug. 26: 1:00 p.m. Roundtable, Ward Six City Hall at 3202 E. 1st
- Sept. 23: 1:00 p.m. Roundtable, Ward Six City Hall at 3202 E. 1st
- Sept. 26: 9:00 a.m. General Meeting - Pima College
Volunteers make it happen
As part of SACS’s mission to educate the public and health professionals about celiac disease, volunteers set up informational booths about CD and dispense literature and answer questions.
It is particularly gratifying to talk to someone who has been having problems for years and see that light bulb flash on in their mind that says, “Oh, I should be tested for this.” With 97% of the celiacs in the US undiagnosed, SACS is filling a real need in the community.
Contact any board member to volunteer (with others) to serve a couple of hours at one of these events. SACS’s next scheduled educational event is at the Marana Care Fair on May 30th.
President Cheryl Wilson also does formal presentations using a Power- Point Program that are designed to reach health care workers in the public schools. She needs volunteers at these events to help with dispensing literature and setting up displays.
Before the April presentation for the Flowing Wells, Amphi and Marana school districts, the head nurse stated that the SACS presentation was not as ‘critical’ as some they offer. After the presentation she changed her tune and said, “EVERYONE should hear this. I learned SO much!”
SACS continues to get questions and requests for assistance from health care workers around the county based on these presentations. Some have signed up to be screened for CD themselves.
Remember, every time a celiac gets that diagnosis, the world is a little better for YOU! You will have more access to affordable, safe GF products and eating out will be safer and easier. Besides, it’s the right thing to do. Volunteer to make this happen. We cannot count on anyone else doing this for us.
Membership renewal due July 1
Membership renewals are due by July 1. Our membership year for everyone is July 1, 2009 to June 30, 2010. Your best deal is just $65 for five years. Membership is tax deductible.
New members who have joined since March 1 are considered paid for the coming year. If you joined before March 1 renewal is necessary to remain a member.
Where your money goes: We do education in the form of presentations for school nurses, dieticians, and health information fairs. SACS pays for attention-getting banners as well as printed informational handouts. We also publish a New Member Packet and send a chapter newsletter six times a year. This fall, SACS will pay travel expenses so a world famous celiac researcher, Dr. Ford, can speak to our membership and to health professionals in Tucson.
Don’t forget to cut out/print out and send in the membership renewal form.
If you are not renewing please let us know either via the website or by calling (520) 744-3862.
2009 GF Food Faire location
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