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
- CD pill? Dr. Pearson offers exciting news
- SACS volunteers make a difference and are needed!
- SACS applies for grant money
- Chapter 15 Notes
- Mimi’s is a 5-Star experience
- Maybe a FDA approved drug for CD
- Mark your calendar
- CD screening pays off
- Map to March 28th general meeting
- How much xanthan gum to use?
- Lemon bars are tangy and tasty
CD pill? Dr. Pearson offers exciting news
By CHERYL WILSON
It’s the first general meeting for 2009, Saturday, March 28th, 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).
Our own Dr Lindsey Pearson, NMD will be giving a presentation and all of you are going to want to attend. After speaking with Dr Pearson on the phone, I got excited about the news he will present to our group about the very promising results of studies done on the drug being produced by Alba Therapeutics (see his article p.3). Dr Pearson was able to share a “woo-hoo!” from his own practice that I believe will inspire you all.
He will begin his talk discussing the differences between Celiac Disease and Gluten Intolerance. He will discuss how they affect the body, how to diagnose them, and how to treat them. He wrote a short article for our newsletter on the topic back in 2008 but, since we seem to get questions about this subject so often, we asked him to speak on the subject. Since he has a thorough understanding of the various antibody tests that are used in the diagnosis of these immune-mediated response syndromes, I knew he would be the perfect person to explain them in a way that we can all understand.
The question/answer period following his presentation will be especially informative.
Make sure you attend on March 28th and bring your friends and family. As always, our meetings are free and open to the public. Besides the main speaker, we will have a raffle for GF goodies and a report from Cel-Kids.
If you want to bring a GF snack to share, 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.
SACS volunteers make a difference and are needed!
- Cheryl Wilson and Pat Hirsch gave a presentation to health workers in the Vail School district on Jan. 28th of this year. Volunteers can help by donating their time to meet with health workers in all the area school districts and by donating funds to print SACS educational materials. Contact Cheryl Wilson.
- SACS needs donated items or services for the GF Food Faire Silent Auction on May 9th. Can your favorite restaurant donate a gift certificate? Can you or one of your relatives donate services associated with your job? Do you have that Christmas present from Aunt Mildred that you simply cannot use but also can’t take back without hurting her feelings? Donate it and everyone wins. SACS is a 501 C(3) non-profit and all contributions are deductible to the limits of IRS regulations. Contact by phone or email any board member and they will see it gets picked up and you’re issued a receipt.
- SACS is participating in the Tucson Children's Museum's Health and Wellness Faire on Saturday, April 18th from 10-3. We need volunteers to help with the Cel-Kids booth. It’s free admission day so there should be lots of little people there with their parents. Call Pat Hirsch at 744-3862 if you can donate an hour or so of your time on that day.
SACS applies for grant money
SACS member and professional grant writer Deb McIff applied for a Community Investment Grant from The Community Foundation for Southern Arizona on behalf of SACS.
For the last eight years, Deb has been writing competitive and entitlement grants for 10 charter schools in the Phoenix area. She also manages the reporting required by the granting organizations. Deb, along with SACS president Cheryl Wilson, spent at least 10 hours filling out the forms and polishing the final essays required for consideration for this funding.
If we are successful, SACS wants to use the roughly $10,000 we have requested to underwrite printing costs of our promotional and educational materials, place advertisements in local media for SACS’ events and to purchase and distribute Physician Education Program Kits from CSA.
SACS is very grateful to Deb McIff for volunteering her time and special expertise.
Chapter 15 Notes
- REMINDER: April has five Wednesdays. The Roundtable is on the 22nd, the fourth Wed. APRIL LUNCH BUNCH will be on April 3rd this year due to conflicts with Passover and Good Friday observance which are both on the second Friday in April. Be sure and mark your calendar in terms of this change.
- The Hershey Company announced that York Peppermint Patties and other candy brands are no longer being made in the US and are being outsourced to a new factory it recently built in Monterey, Mexico. The plant will also produce 5th Avenue and Zagnut candy bars and Jolly Rancher hard candies. This might be an issue for people who want to buy American or distrust imported foods. (There is no evidence that the candy will be unsafe to eat.)
- Fry’s and Costco’s Omeprazole (generic Prilosec) is manufactured for them in Israel. In order to determine the GF status of this drug, you need to call Costco or Fry’s 1-800 number with the batch number of the box you purchased in order to determine its GF status. The manufacturer uses gluten excipients when it is more economical for them to do so.
- 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.
Mimi’s is a 5-Star experience
By PAT HIRSCH
Mimi's Cafe on Oracle at Wetmore was an absolutely fabulous GF experience! I ordered the broiled salmon which was divine, with rice and a fresh vegetable medley. Their GF sweet/sour sauce was the crowning flavor and the huge portions required a take home package!
Colleen Beaman, LB organizer, had her favorite Mimi's dish, pork chops (which she always orders there) and loved it. The wait staff was friendly, helpful and patient, courageous and even heroic! They assured each of us (21 were at our table) that the chef would prepare our grilled onions in separate pans so there would be no chance of contamination from the grill. They were sure to instruct the salad preparers to change their gloves so there would be no gluten contamination from handling croutons. When someone felt unsure of the vinegar in the salad dressing, they personally saw to it that lemon was used instead.
I must say, they were ready for us. The restaurant had even prepared a "How to Order for Special Diets from Mimi's Menu" tip sheet which was actually three pages long. While it was designed for their menu, the tip sheet had tons of good ideas to apply to any menu..
I give Mimi's five stars!
The Arizona Daily Star sent a photographer/reporter to cover our March 13th LB at the Tucson Tamale Company. Watch for the photos and articles in the March 19th issue of the AZ Daily Star in the Caliente Section. The Tamale Company is the only restaurant in town where everything is totally GF. If you want healthy fast food at a reasonable price, they’re great. Look for a complete restaurant review in the May issue of the Celiac Digest
Maybe a FDA approved drug for CD
By LINDSEY PEARSON, NMD
At the 2008 American College of Gastroenterology Annual Scientific Meeting, Alba Therapeutics presented new data on Larazotide acetate. The new drug Larazotide acetate shows promise for people with celiac disease. It has been fast tracked by the FDA for approval and has demonstrated prevention of gluten- induced immunologic changes in celiac patients. Larazotide acetate could be the first FDA approved drug for the treatment of celiac disease.
To better understand Alba’s presentation, an understanding of intestinal structure is needed. The intestines are made up of endothelial cells that are held together by tight junctions, much like bricks of a wall held together by mortar. Under normal circumstances, the gut cells are tightly held together and only let particles from the intestines (gut) enter the bloodstream through specialized channels. Because of the barrier that tight junctions form, nothing is allowed to sneak through the spaces between the cells and into the bloodstream. This is what makes the normal, healthy gut a barrier between the outside world and the inside world. Anything that crosses this barrier that shouldn’t is seen as foreign and is attacked by the immune system.
In clinical studies, Alba reported that after a gluten challenge, an increase in circulating regulatory T cells and a decrease in B cells were observed in the placebo group. These changes were not observed in the group on Larazotide acetate. This is significant because celiac disease is a T-cell mediated autoimmune disease with a highly specific humoral (B cell) response. Regulatory T cells, formerly known as suppressor T cells, are critical for maintaining immunological tolerance; they are the “police” of immunologic responses making sure the response doesn’t get out of hand. B cells are produced where there is a foreign invader. Their function is to produce specific antibodies against the foreign invader. In the Larazotide acetate treated group there was no increase in regulatory T cells and there was a decrease in B cells, thus implying there were no significant T cell mediated response to control and no foreign substance to produce antibodies against. This showed that Larazotide acetate stopped the underlying cause of immunologic activity that was present in the placebo group.
Alba also presented that Larazotide acetate inhibited increased permeability caused by tumor necrosis factor alpha (TNF-alpha) and interleukin 4 (IL-4). This is significant to celiac disease because TNF-alpha and IL-4 promote membrane changes that cause “loosening” of the tight junctions. By inhibiting permeability, only those substances that have specialized channels are allowed across the gut wall into the bloodstream. It appears that Larazotide prevents “leaky gut” and the subsequent ability of foreign particles to enter the bloodstream from the gut that initiate an immune response.
Lastly, Alba presented that the use of the Gastrointestinal Symptom Rating Scale (GSRS) was relevant to patients with celiac disease. Up to this point, the GSRS was used as a validated measurement in clinical trials of IBS and peptic ulcer disease. Alba said, “Results showed that relevant subscales of the GSRS may be useful in clinical trials of novel treatments for celiac disease.” This finding now gives researchers a tool to measure outcomes in other celiac disease studies.
The take home message of Alba’s presentation is three-fold:
- Larazotide acetate treated subjects did not demonstrate the expected increase in regulatory T cells and a decrease in B cells after a gluten challenge;
- Larazotide acetate inhibited intestinal permeability mediated with TNF-alpha and IL-4, suggesting it as a potential therapeutic agent for the treatment of celiac disease and IBD; and
- Validated the appropriateness and relevant subscales of the GSRS and that it may be useful in clinical trials of novel treatments for celiac disease.
Mark your calendar
- March 25: 1 p.m. Roundtable, Ward Six City Hall at 3202 E. 1st
- March 28: 9:00 a.m. General Meeting, Dr Lindsey Pearson, speaker. Update on Celiac Testing and Treatment. A Primer on Celiac Disease vs Gluten Intolerance and a Q & A session
- April 3: 11:30 a.m. Lunch Bunch, a week early this month because of Good Friday and Passover holiday conflicts the following week. Location TBA.
- April 22: 1: p.m. Roundtable, Ward Six City Hall at 3202 E. 1st
- May 8: 11:30 a.m. Lunch Bunch. Location TBA
- 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
CD screening pays off
Last year Prometheus Laboratories Inc. donated 100 test kits to SACS so we could offer free celiac blood screening to people who have at least one first-degree relative diagnosed with CD. This year, Prometheus has donated 200 test kits and we will be able to offer CD screening to even more people during the May 9th Gluten-Free Food Faire.
These are just numbers until you realize the impact a free test can have on a person’s health. Jeannine Faidley, past-president of SACS, was able to have her son tested under this program. She had this to say about the increased number we will be able to test this year:
This is great news! I feel this is a wonderful service to the community. My son was one of the two who were diagnosed last year at the Food Faire. He had been tested four years ago but came up negative which I didn't agree with. His doctor told him every time he brought it up that he didn't need to be retested. He went to another doctor in his plan and was told the same thing.
As he is in a HMO, there was no way to argue this. Thank you for making him NOT suffer who knows how many more years. He sticks to the GF diet and has recovered from many of the health issues over the last year. Thank you for all the hard work it takes to make the screening possible. I will be there to help anyway I can. - Jeannine
Of course, as Jeannine and her son James Clark discovered, a person may have a negative celiac blood test at one point in time and be positive with the next test.
As SACS members, we have to educate/persuade the doctors and insurance companies to not assume that just one test will provide a definitive answer.
Map to March 28th general meeting
How much xanthan gum to use?
Do you have a favorite family recipe that you want to convert to gluten- free? The guide below will give you a starting point for how much xanthan gum to add.
Another baking change you might want to consider is modifying the pan size for traditionally wheat-based recipes. For instance, a GF cake might come out soggy in the middle and crispy on the outside whereas cupcakes or mini-cupcakes made from the same recipe might bake perfectly.
Xanthan gum is a common ingredient found in many commercial products, like salad dressings, energy bars and even some ice cream. Every baked item requires some xanthan gum, but don’t overdo it. If you use too much, baked goods can turn rubbery and salad dressings will resemble glue (although most salad dressings don’t require any xanthan gum). If you are sensitive to corn or yeast, guar gum, a legume, is a good substitute for xanthan gum. For best results, use 50% more guar gum than you would xanthan gum.
- Salad dressings
- 1/8 to ¼ tsp. per cup of liquid
- ¼ tsp. per C of GF flour Cakes
- ½ tsp. per C of GF flour
- ¾ tsp. per C of GF flour
- 1 to 1½ tsp. per C of GF flour
- Pizza crust
- 2 tsp. per C of GF flour
- 1 tsp. in place of each tablespoon of original (cornstarch, flour, etc.) thickener
Lemon bars are tangy and tasty
Use this year’s plentiful crop of citrus to make these moist lemon bars. Adapted from a ‘real’ recipe.
- ¾ Cup GF flour
- ½ tsp Xanthan gum
- ¼ Cup plus 1 ½ TBS powdered sugar
- 1/8 C. cornstarch
- 6 TBS chilled butter in 1 TBS pieces
- 1 ½ C. granulated sugar
- 3 eggs
- ½ cup plus 1 tablespoon fresh lemon juice
Preheat oven to 325 degrees. Combine 3/4 C flour, ¼ C. TBS cup powdered sugar, Xanthan gum and 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 three ingredients in a mixing bowl until crumbly.
Press the mixture in the bottom of a 6 x 10 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 in the 1/8 C cornstarch and all of the lemon juice. Spread evenly over the baked layer.
Bake for 30 more minutes or until set. Remove from oven and cool on a wire rack 30 minutes. Sprinkle with the 1 ½ TBS of powdered sugar, and cut into bars. Store in the refrigerator.
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