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
- Gluten in meds, CD vs ‘sensitivity’ topics Sept. 27
- Picazzo’s is coming closer!
- Using NutritionData.com to get the most out of what you choose to eat
- Empty Rx bottles needed for Mexican clinic
- Chapter 15 Notes
- Dr. Fasano on Celiac Disease vs. Gluten Sensitivity
- Shop Basha’s?
- September 27th meeting map
- Mark your calendar
- Labeling and FDA hearing
- CD mysteries being solved by researchers
- Gluten-free and back to school
- GF Goodies for sale at meeting
Gluten in meds, CD vs ‘sensitivity’ topics Sept. 27
Two SACS Medical Advisory Board members will speak at our next general meeting, Saturday, Sept. 27th, 9 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. 4 or our website at www.SouthernArizonaCeliacSupport.org).
The main speaker will be pharmacist Georgina Rubal-Peace, Pharm.D. and a SACS past president who will discuss the presence of gluten in prescription and over the counter (OTC) medicines. Of course, she will be happy to answer any questions you might have about drugs and drug interactions.
Lindsey Pearson, NMD will give a short presentation detailing the medical difference between celiac disease versus gluten sensitivity. Dr. Pearson will also answer questions from the audience.
This will be your chance to clarify what drugs are safe to use and to find out what you should do if your celiac diagnosis comes up negative but you still have trouble with gluten. Both MAB members have contributed articles for this issue of the Celiac Digest.
All meetings are free and open to the public. If you know of someone who might benefit from this information, be sure and invite them.
If you decide 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 along with a half-hour period of meet and greet for members and newcomers alike.
Picazzo’s is coming closer!
OK, not close-close as in downtown Tucson, but ‘closer’ as in Casa Grande. While on a factfinding /pizza-eating mission, your editor and SACS president Cheryl Wilson spoke (between bites of pizza) to Dennis Daniel, general manager of Picazzo’s.
Picazzo’s has plans to open its ninth location in downtown Casa Grande sometime in mid October. To celebrate this, Dennis gave us two-for-one pizza coupons which are available to SACS members. Cheryl will hand them out at the general meeting on the 27th.
Also in the works is a plan to have the November Lunch Bunch meeting at the brand new Picazzo’s. Details about time, date and carpooling will have to be worked out once we have more information about the new restaurant. Of course, two-for-one coupons will be available for that event. Check our website for updates.
Using NutritionData.com to get the most out of what you choose to eat
By LINDSEY PEARSON, NMD
Two of the most important aspects of the physician-patient relationship are education and empowerment. Educating and empowering the patient can set one up to succeed and become an active participant in his or her own healthcare. With celiac disease, nutritional education is paramount. In addition to eating gluten free foods and gluten free supplements (see the SACS website resources for a list), you want to consume foods that are nutrient dense, meaning high in vitamins, amino acids, minerals, and fatty acids per serving. You want to make sure when eat you get the biggest “bang for your buck.”
One web based tool you can use to check the nutrient content of the foods you eat is NutritionData.com. This website is designed to give users a comprehensive analysis of foods that include: Fullness/Nutrient Factor; Caloric Ratio; Glycemic Index; Inflammation Factor; Nutrient Balance Completeness Score; Protein Quality (amino acids); and the Daily Values of vitamins, minerals fatty acids, and other nutrients. In this program you can look up individual foods or foods by nutrient to see what foods are the highest or lowest in a certain nutrient, and you can even analyze a whole recipe.
At NutritionData.com you can you can do a quick search or create a free sign-in account to use a number of nutrition management tools. You can even save recipes, track your daily consumption, and perform comparisons of foods and recipes. This is one of the best free nutritional programs I have found and use it with most of my patients. Knowing what you are eating is one of most important things you can do to lower your risk factors associated with celiac disease.
This is one of many tools that can assist you in becoming educated, empowered, and active in the management of your healthcare.
Empty Rx bottles needed for Mexican clinic
Bring empty prescription and/or vitamin bottles to our meeting Saturday the 27th.
A free medical clinic in Nogales, Sonora will remove the labels, sterilize the bottles and use them to dispense medicines and vitamins from their bulk supplies.
US law prohibits the reuse of prescription bottles, but Mexican law does not. This is a free clinic and they need all the help they canget.
For more information, contact Board Member Pat Hirsch at 744-3862.
Chapter 15 Notes
- Be mindful of Tums® products. Kids Tums and their Smoothies products are NOT GF. The Regular, Extra Strength, and Ultra Tums are GF and safe.
- Ghirardelli Chocolate Company started production of a new milk chocolate bar, Luxe Milk Crisp, which contains barley malt. As a result, the production line for chocolate bars and squares now share a common line with barley gluten. However, all flavors of the chocolate chips are GF and produced on a separate, uncontaminated line. They do clean the line between runs, so you may still get away with eating everything but the white chocolate and the new Lux Milk bar.
- Rice Dream rice milk uses barley enzymes in its production, hence it is not strictly GF. Trader Joe’s sells a rice milk that is GF and much cheaper than Rice Dream, too.
- Quinoa flakes can be used as a substitute for oats in recipes. Chewable Centrum Vitamins contain manitol which is derived from wheat. Their regular vitamin pills are GF.
- CSA is asking for your assistance in updating information for the next edition of The CSA Gluten- Free Product Listing. The section, CELIAC FRIENDLY STORES, lists supermarkets, health food stores, and specialty markets by city in almost every state. Look for your state in the document at http://www. csaceliacs. org CeliacFriendlyBusiness. php. The document is a PDF and will probably require some time to load.
- 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 742-4813.
Dr. Fasano on Celiac Disease vs. Gluten Sensitivity
(Posted at Diet.com by Tricia Thompson MS/RD @ 8:11am ET on August 5, 2008 and reprinted with Ms. Thompson’s permission)
When I first started working in this field, the term gluten sensitivity was used interchangeably with the term celiac disease — they basically meant the same thing.
Times have changed. We are now learning that there is a group of people who do not have celiac disease and do not have an allergy to wheat but nonetheless cannot tolerate gluten. This condition is being called “gluten sensitivity.”
Very little research has been conducted on gluten sensitivity. However, a study abstract on this condition was recently presented at a medical conference known as Digestive Disease Week. One of the study authors was Alessio Fasano, M.D., Medical Director of The University of Maryland Center for Celiac Research. Dr. Fasano was gracious enough to answer some questions about gluten sensitivity.
Q. The term non-celiac gluten sensitivity is being used with more frequency. Can you please define what it is and how it differs from celiac disease?
A. Gluten sensitivity is a non-allergic, non-autoimmune reaction to gluten that can cause symptoms similar to those experienced by people with celiac disease.
Q. In your medical practice, how do you determine if a patient has non-celiac gluten sensitivity?
A. Because gluten sensitivity is not a food allergy (like wheat allergy), or an autoimmune process secondary to exposure to gluten (like celiac disease), the diagnosis is based on exclusion criteria. In other words, people that experience symptoms that are suspected as being related to gluten exposure will be tested for wheat allergy and celiac disease. If they are negative for both, gluten sensitivity is considered. The diagnosis will be confirmed if symptoms resolve following the embracement of a gluten free diet.
Q. An abstract was presented at Digestive Disease Week that you co -authored entitled, "Role of the innate immune system in the pathogenesis of gluten sensitivity: Preliminary study." The abstract suggests that celiac disease and gluten sensitivity may be two separate diseases. Can you please explain?
A. As mentioned above, celiac disease is a true autoimmune disease (like type 1 diabetes and multiple sclerosis) in which both innate and adaptive immunity are involved. Conversely, gluten sensitivity is a nonautoimmune reaction to gluten in which only the innate immune system is involved.
Q. In an article you wrote about Digestive Disease Week for Medscape Gastroenterology you state that gluten sensitivity "may be related to activation of the innate immune system without the involvement of the adaptive immune system." Can you please explain further, including what is meant by innate immune system and adaptive immune system?
A. The innate immune system is the most ancestral form of defense we have against "invaders," while the adaptive immune system is a more recent branch of our immune system. Once our body comes in contact with a substance from the environment that may represent a signal of danger, the innate immune system reacts immediately to try to eliminate the "attacker."
At the same time, the adaptive immune system will intervene with a more sophisticated, long process, during which the attacker is studied, its conformation evaluated, and a "customized response" to that particular molecule is engineered (i.e. specific antibodies). Further, the adaptive immune system will save this information as immune response memory, so that at the next encounter there is no need to re-do the job. In autoimmune diseases, like celiac disease, there is a coordinate response between innate and adaptive immune system, a response that ends up in the wrong direction (i.e.; attacking its own body rather than the "invader"). In gluten sensitivity, there is only an innate immune response, since the adaptive immune system seems not involved.
Thank you Dr. Fasano!
It is important to remember that regardless of whether you have celiac disease or non-celiac gluten sensitivity the treatment is the same — a strict gluten-free diet.
LynRae Ries of the Gluten-Free Creations Bakery in Phoenix was approached by Basha’s stores in Tucson about carrying her products. Even though she expressed interest, she didn’t hear from them again.
However, she is eager to sell her products in a Tucson store and we are sure eager to buy them. If you usually shop at Basha’s, talk to the manager during your next visit and tell him there is a market for gluten free baked products. The more people who contact the store managers the better!
September 27th meeting map
Mark your calendar
- September 24: 1:00 p.m. Roundtable, Ward Six City Hall at 3202 E. 1st St.
- September 27: General Meeting - 9 am, Pima Admin Campus, MAB members will speak.
- October 2: Amazing Grains Cooking Class. See website for details
- October 10: 11:30, Lunch Bunch, Chipotle, Grant/Swan. Call 888-2935 to confirm
- October 16: CSA Dieticians Day in La Vista, Nebraska (Omaha)
- October: 17-19: CSA Conference in La Vista, Nebraska (Omaha)
- October 22: 1:00 p.m. Roundtable, Ward Six City Hall at 3202 E. 1st St.
- October 24: 12:30, Board Meeting, Ward Six City Hall at 3202 E. 1st St.
- Nov: 8: Potluck, 1st Eveng. Free Ch.
- Nov: No Roundtable during Nov/Dec
- Nov: Pizza Run—Date/Time TBA
Labeling and FDA hearing
The FDA has announced that it will hold a public meeting on September 16, 2008, to gather additional information about the use of advisory labeling of allergens in food. That information will be used to help the agency in determining:
- how manufacturers currently use advisory labeling;
- how consumers interpret different advisory labeling statements;
- what wording is most effective in communicating to consumers the likelihood that an allergen may be present in a food.
The FDA is also interested in learning if consumers find advisory labels useful when deciding which foods to purchase. According to the Federal Register (FR) notice, the FDA is developing a long-term strategy to assist manufacturers in using allergen advisory labeling that is truthful and not misleading, conveys a clear and uniform message, and adequately informs allergic consumers and their caregivers.
Interestingly, the notice specifically focuses on the impact of advisory labels for those with food allergies. It makes NO MENTION of the impact advisory labels may have on individuals who must adhere to a strict gluten-free diet, i.e., those with celiac disease.
The official FR notice for the meeting can be accessed at: www.cfsan.fda.gov/~lrd/fr080808.html.
Comments on the questions outlined
in the FR notice may be
submitted in writing to:
Division of Dockets Management (HFA-305),
Food and Drug Administration
5630 Fishers Lane, Rm. 1061
Rockville, MD 20852
Or electronically through www.regulations.gov. The Docket number is FDA-2008-N-0429. The deadline for the comments is January 14, 2009.
(Info: Beth Hillson, President, American Celiac Disease Alliance http://americanceliac.org/)
CD mysteries being solved by researchers
By GEORGINA RUBAL-PEACE, PHARM.D.
Celiac disease is a unique autoimmune disease because it is the only autoimmune disease where the triggering environmental factor is known. Although it is currently known that gliadin causes the reaction in celiac disease, understanding the mechanism on a molecular level is not entirely clear.
Lamers et al performed a study to determine which receptor gliadin binds to in the intestine thus causing intestinal barrier impairment. In a normal intestine, gliadin does not pass through the walls of the intestine into lymphoid tissues associated with the gut. Tight junctions keep large molecules such as gliadin from passing into the lymphoid tissues.
Dr. Fasano from the Center for Celiac Research in Maryland has done much research on a protein, zonulin, which is thought to cause these tight junctions to become “leaky.” This study found that the chemokine receptor, which is a receptor that causes inflammation, CXCR3 is the target receptor for gliadin. The study showed that it is crucial for gliadin to bind CXCR3 in order for zonulin to be released because mice, who were deficient in this receptor CXCR3, did not release zonulin when challenged with gluten.
Uncovering which receptors are responsible for causing the reaction in celiac disease brings researchers one step closer to determining how to block this reaction from occurring.
Lammers KM, Lu R, Brownley J et al. Gliadin induces an increase in intestinal permeability and zonulin release by binding to the chemokine receptor CXCR3. Gastroenterology. 2008; 135: 194-204.
Gluten-free and back to school
http://www.diet.com/dietblogs/read_blog.php?title=Gluten-Free+School+Lunches&blid=12252. It’s a long web address, but it provides valuable information on school lunches and how to ensure they are gluten-free for your celiac student.
It also provides other web addresses with other resources, some of them with concerned with the legal obligations of public schools to accommodate students with celiac disease.
If you do not have an Internet connection and need this information, contact the newsletter editor (see contact list) and a printout of the article will be sent to you. Or, you can access this at your public library by way of their computers.
GF Goodies for sale at meeting
A limited amount of frozen GF goodies from the Gluten-Free Creations Bakery in Phoenix will be available for sale at the general meeting on September 27th. The baked goods have been donated with the proceeds going to benefit SACS. So, not only are the GF Creations tasty (and safe), your donation is tax deductible.
First come, first pick of pies, muffins, breads, etc. You might want an insulated bag or box if you plan on taking the baked goods home still frozen.
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