The Celiac Disease Resource, Inc.

Dr. Cary Qualia - November 2, 2011 - 6:45 P.M.

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In This Issue
Holiday Brunch at Sherry Lynn's
See What You Missed!
Pediatric Celiac Disease By Cary Qualia MD
Creating Celiac Kids' Space
Reviews by Kathleen Boehning
E-Mail Folder
Reviews - Continued
SherryLynns
Holiday Brunch at Sherry Lynn's
Gluten Free
December 10, 2011
11:00 AM - 2:00 PM
786 Troy-Schenectay Road (Route 7)
Latham, NY

Join us for our last 2011 informal "restaurant outing" to celebrate the holidays and informally welcome those who are newly diagnosed. We look forward to an opportunity for an open discussion regarding issues associated with adhering to a gluten-free diet. All of our restaurant outings are open to the public.

All attendees are responsible for payment of their individual menu orders.

RSVP to:
Roz Spiller - 518-461-7065 or

Sherry-Lynns - 518-786-7700

Quick Links

Saratoga GF Event Cake
Event Cake By
Saratoga Gluten-Free Goods!
If you were not at our Outback Steakhouse BBQ Fundraiser on Oct. 9, 2011, this is what you missed. The rest of us took 2 hours out of a sunny day to enjoy a great meal and this delicious chocolate cake! Better luck next time!
 
A BIG THANKS to Bruce Anderson and his family for serving up a great BBQ and to Saratoga Gluten-Free Goods! who also donated their delicious gluten-free rolls - there were plenty of smiles and "doggy" bags!!
  
Jeanne, MaryAnna & Robert at SARATOGA GLUTEN FREE GOODS! (518-456-0429) are pleased to announce that their delicious baked goods are now also available at: 
 

Paradise Natural Foods
1823 Western Ave., Albany
518-456-0429
 
Basic Foods

585 Saratoga Rd., Glenville

518-399-2742

The Meat House, 3057 Rt 50
Saratoga Springs
518-583-4027
 
Wild Thyme Whole Food & Tea Company

108 Milton Av., Ballston Spa
518-885-7275
 
The Greek House (gf pitas)
27 3rd Street, Troy
518-272-6058

Mama Mia's Pizza and Caf�

185 Ballston Avenue
Saratoga Springs
518-583-7783
(FYI: PITAS AND PIZZA CRUSTS ARE NOT AVAILABLE FOR RETAIL SALE)

 

ROOTED IN NATURE
63 Main Street
South Glens Falls  
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Pediatric Celiac Disease
By Cary Qualia, M.D.
 
Qualia, Cary MDDr. Qualia will discuss pediatric celiac disease, symptoms of active disease, and confounding autoimmune conditions.
 
Dr. Cary Qualia provides specialty care for infants, children, and adolescents with a variety of gastrointestinal conditions, such as inflammatory bowel disease, celiac disease, gastroesophageal reflux disease, irritable bowel syndrome, and liver disease. Dr. Qualia also offers minimally invasive options for diagnosis and treatment of GI diseases including procedures such as upper endoscopy, colonoscopy, and wireless capsule endoscopy.
 
Dr. Qualia holds Board Certifications from the American Board of Pediatrics, Pediatric Gastroenterology, 2007, and General Pediatrics, 2004.
Creating Celiac Kids' Spac

Know a kid with Celiac or Gluten Intolerance who could benefit from the chance to connect with other kids with Celiac or Gluten Intolerance? TCDRI is initiating a special place at our meetings just for kids!

 

Our plan is to give kids their own space at meetings separate from the adults to get to know each other, talk about their experiences, and share a gluten-free snack. We all know that living with Celiac and Gluten Intolerance can be challenging, but kids have their own unique concerns - not the least of which is the social isolation that can go along with living gluten-free.

 

We're still working out the details, but we plan to get started at the upcoming meeting on Wednesday, November 2nd at 6:45pm featuring Dr. Cary Qualia. We'll have gluten-free pizza courtesy of Sherry-Lynn's Gluten Free, Latham, NY. We will meet in a separate Kids Space supervised by leaders from TCDRI.

 

In the future, we hope to have facilitators who can help direct the kids' discussions and provide opportunities to explore and process their experiences. To that end, let us know if you are interested in participating.

 

Anyone with questions about our plans or are interested in assisting, please contact Carolyn Keefe at:
kpbitbox@gmail.com or call 518-482-2504.
Reviews by Kathleen Boehning
Dr. Peter Green's Presentation on Sept. 29, 2011

 

The Celiac Disease Resource Inc. welcomed back Peter Green, MD., director of the Columbia University's Celiac Disease Center and author of Celiac Disease: The Hidden Epidemic. He is considered one of the few experts on CD in this country. His last visit was in '08 and there were twice the number of people in attendance. But there was no thunderstorm with downpours to brave back then. Dr. Green's lecture was an hour long and then he took an hour's worth of questions, of which there were many. Perhaps, you can share this information to convince your friend, loved one or yourself to stick with the program. One should not cheat if one has celiac disease(CD). The risk is just too high for an unfavorable outcome.

 

His power point started with the current list of Gluten Related Disorders. There are now 3 recognized distinct disorders. First is CD and Dermatitis Herpetiformis(DH), the skin affected form of celiac which affects 8% of celiacs. Second is Gluten Intolerance or Sensitivity (GS) ( see my Point of Interest on Alessio Fasano, MD. in this issue). And last is wheat allergy. There are many crossover symptoms one would expect to see with celiac, but each affect the immune system in different ways. The main difference is that CD has a mortality risk, whereas the others don't. But GS and wheat allergy are real, even though there is no test yet for GS. If someone has the symptoms of celiac disease but do not have the blood antibodies nor does an endoscopy show damage, then they are either among the 15% of celiacs who pass those tests but have the symptoms and the gene, or they are sensitive. The test for those with GS is, if one feels better off gluten, then one is GS. This gives validity to those who suffer from this condition, and who have been saying so for years. Dr. Fasano, said, "once again, the patients have been the visionaries," in reference to the Maryland Univ. study published in March of this year, which announced that biomarkers prove this sensitivity.

 

With regard to wheat allergy, Green stated that 3% of baking school students develop asthma from wheat exposure. One can get exercise induced wheat allergy as well, or develop a contact rash from working with wheat. It is my belief that culinary schools should be warning students of this possibility and the government should forewarn OSHA and the nurses in wheat mills and food manufacturing plants.

 

The total of GF consumers is estimated between 8-12% of Americans. The GF food industry is now at 20 billion worldwide and growing at 20% a year! This information should be taught at culinary schools across the country, and restaurants should take heed. Advertising a GF menu will mean friends and family members can now dine out together. However, is important that restaurants, and up-and-coming chefs truly understand the seriousness of our disorders, and fully understand the extent of the precautions required to avoid cross-contamination.

 

CD is now considered to affect 1% worldwide, with certain countries, higher. It is an equal opportunity disease, affecting every country and ethnicity. Some countries are now mandating their physicians to do serological testing of their citizens, like Finland and Australia. Consequently, Finland's over-55 population shows a rate of 2.4%. In the U.S. it is now 1%. Yet, most still go undiagnosed, and most present in adulthood. Women are diagnosed more then men, because women go to the doctor much more readily and often than men. Green said that 40% of us carry the gene. But he claims this may not mean one has CD. He relies on the blood and biopsy to determine whether the person has the activation of the gene. He suggests testing for antibodies every 3 years if one has the gene, and advised that in NY, a biopsy must be kept for 50 years. Thus, another look at a negative test, done by a specially trained technician today, might produce a different outcome. The key point here is: Listen to your body.
[Continued - please scroll down to read the rest of this review.]

 

Alessio Fasano, MD - Gluten Sensitivity

 

In a recent Living Without magazine, the director of the Univ. of Maryland School of Medicine's Center for Celiac Research, Alessio Fasano, MD., professor of pediatrics, medicine and physiology at the school, was interviewed. Dr. Fasano headed a recently published study demonstrating that gluten sensitivity(GS) was a real medical condition and different to celiac disease(CD). While many of the symptoms are the same, each affect the immune system differently. (Click here to read article: Q & A with Alessio Fasano, MD)

 

It is estimated that GS affects 6 to 7 times more people then GD. There has been a 4-fold increase in cases of CD in the last 40 years. Part of the reason there is such a rise of GS is that today's wheat contains far more gluten, as it has been engineered to give it better ability of elasticity, but our bodies are not adapting fast enough for the leaps science is making. (See Editor's Note Below)

 

Unfortunately, there is no test yet for GS. And he does not recommend going on a GF diet untill one is seen by a doctor to rule out CD or wheat allergy. The poster boy for bringing more attention to this disorder is the tennis star, Novak Djokic. He claims since he started the GF diet he is more on his game.

 

For a more extensive interview this year go to: Dr. Fasano - On The Future of Celiac Disease. Dr. Fasano presented the latest figures of the diagnosed celiacs in this country being 1 in 133, but he also says that 90% of those with the disease go undiagnosed. The Center for Disease Control consider CD to be a national health threat because of all the undiagnosed individuals filling the waiting rooms of medical practices. As I mentioned in last month's column, the JAMA has linked CD with 20 other medical conditions.

 

Fasano's center has been awarded 45 million by a grateful patient. If your budget allows, NY's own Columbia Univ.'s center of research is requesting donations. Any amount will be much appreciated. Checks can be made out to the Trustees of Columbia University and mailed to the Celiac Disease Center at Columbia Univ. Medical Center, Harkness Pavilion, Suite 934, 180 Fort Washington Ave., New York, NY 10032-9803.

 

(Editor's Note: Foods Alive October 2011 Newsletter has an interesting article regarding GMO foods: Click Here for Link To Their October Newsletter) 

E-Mail Folder
Gluten Free Class at Hannaford Supermarkets 

Monday November 7 (6pm-7pm)

Includes Info packet, coupons and tour

9 Clifton Country Rd., Clifton Park 12065

Call 518-383-4136 to register

 

Gluten-Free Buffet at Schenectady Community College

Tuesday, November 8, 2011 from 6:30-9:00. $20.00 inclusive.

Click on "Events" at: www.sunysccc.edu/culinary

 

Is A Trip To China In Your Future?

I went to China for a week in early September. Since there's gluten in most soy sauce, I was a bit apprehensive about what I would be able to eat in China. A friend who is a professor of Chinese language wrote out a short note for me in Chinese explaining my need for food without wheat, barley or rye. I showed the note to various people where I was eating and they steered me away from anything I shouldn't eat. It worked very well. Twice the note was carried back to the kitchen so the chef could make recommendations. I plan to use this note whenever I visit a Chinese restaurant locally. My note was also borrowed by a few people from the group I traveled with. If anyone reading this would like a copy of this note, please e-mail me and I'll send it back as an attachment.

Marian Price - bobmar37@aol.com

 

Or, How About a Trip To Italy?

Greetings From Keely Wood at Jovial,

I have sent Jovial organic Brown Rice pasta sample packets to most of the Celiac/GF chapters on this email. I thought you might like to enter a chance to win a trip to Italy. You would also get a chance to meet and dine with Shauna Ahern the Gluten-Free girl and her husband the Chef. Please share this giveaway with all your GF friends. Thank you & Good Luck

Keely Wood, Euro USATrading Co.Inc/bionaturae & Jovial, 919-708-5221, www.jovialfoods.com, www.bionaturae.com

 

Digestive Health: Experts Weigh In

How Do Food Allergies Affect Digestion?

"Nausea, heartburn, indigestion, upset stomach, diarrhea," is a familiar tune for the pink potion many digestive health sufferers currently or in the past have kept in their medicine cabinet. Based on new finding and discoveries on food intolerance, chronic conditions, ulcers, IBS, fiber, probiotics, colonics, cancer and other hot digestive issues, the you may find the 12 topics on digestive health, covered by Digestive Health's chosen 15 experts, invaluable and useful. For more details, Click Here

 

Happy Healthy Living and Digestion! - Alisa Vilabrera, Outreach Director, Everyday Health, alisa@everydayhealth.com, 646.728.9830, 345 Hudson Street, 16th Floor, New York, New York 10014

www.twitter.com/everydayhealth, www.facebook.com/everydayhealth

 

Submitted by Marian Price:

Interesting Article Mentioning Dr. Peter Green

The Healthy Skeptic: Supplements claim to break down gluten:
That was a great lunch (10/9 Outback BBQ)

Kudos to whoever organized it. My daughter went to Gold Orchard and ran into a GF business. In case you haven't heard of it, check this out: www.gluten-free-dessert-kitchen.com

She brought me back a scone (delicious) and an applesauce cake which I haven't touched yet.

Dr. Peter Green Presentation Review - Continued 

Typically children are not tested unless a close relative has CD, or they have an autoimmune disorder, autism or Down's Syndrome. Dr. Green does not recommend the endoscopy for children, and suggested that it is better to get the cheek swab gene test, before subjecting them to the rigors of the strict diet. He pointed out that the earlier the diagnosis, the lower the risk of developing another autoimmune disorder-no risk, if found by age four. Seizures are more common in kids with CD. Children born by caesarian section have a high risk of developing CD. Dental enamel is formed by age seven so any yellow or stratification of color is a potential sign for CD.

 

He mentioned that in Europe, they are recommending breast feeding for at least 6 months and introducing a few crumbs of wheat to the infant between the age of 4 and 6 months, not before or after, but in that limited window. It appears to provide protection from triggering the onset, whereas, if done before 4 months and after 7, it increases their risk of onset.

 

Some good news Dr Green related is there is lower risk of colon and breast cancers in the CD population. Also, while gluten can be in some medications, most are now GF, made with corn starch instead of wheat.

 

Some bad news: CD causes lower fertility rates, in men as well as women, possibly due to absorption and nutritional deficiencies problems. 70% of celiacs are overweight. Canker sores are common. Celiacs have a 3-10 times higher rate of autoimmune disorders. Green says that anyone with a chronic autoimmune condition, requires specific follow-up medical and nutritional care. He said B1, B6 and B12, Vitamin E and copper deficiencies are often found in CD. If one is suffering from fatigue, then iron levels and serum carnitine tests should be run as well. He strongly recommended seeing a dietitian with the results.

 

Symptoms that alert him for possible CD are diverse and include: anemia, ataxia, bloating, bone disease, dental issues, GERD, hyperalbuminema, hyperamylasemia, hypocalcimic with secondary hyperparathyoidim, low ferritin, low HDL, abnormal LFT, thyroid disorder, weight loss. Misdiagnosed skin conditions that occur anywhere on the body, including the face, may be dermatitis herpetiformis. The correct way to test DH is to biopsy 1mm from the margin of the outbreak. He warned that if one has DH, then you must restrict iodine and NSAIDS intake.

 

Peripheral neuropathy affects 30% of CD where it occurs in only 15% of the general population. (don't forget to try methylcobalamin (B12) for PN) . Osteoporosis is very common in CD with higher rates of fractures. He does not recommend bone density drugs. He feels they can be dangerous.

 

A small group of celiacs have refractory CD, meaning they still have bowel issues while on a GF diet. He offered several tests to help rule other possible factors. Green stated that pancreatic insufficiency is quite common in celiacs and he recommended a stool test called fecal pancreatic elastase. Another cause of refractory CD might be an overgrowth of bacteria in the small intestine, and cautioned the use of probiotic supplements. However, several audience members commented that probiotics helped them recover more quickly after exposure to gluten. Other tests include lactose and/or fructose intolerance breath tests.

 

Celiac disease increases the higher rate of melanoma, cancer of the esophagus (many celiacs suffer from heartburn for years before diagnose), and a 23% higher rate of thyroid cancer. The mortality rate of lymphoma of the intestines is 40-80% higher than the rest of the population, with those not adhering to the GF diet having the greater risk. However, the longer one is on a GF diet (over 15 years), the risk of developing these cancers is lower.

 

Dr. Green ended his talk with a plea for donations to the Center, which is celebrating its ten-year anniversary. Checks can be made out to the Trustees of Columbia University and mailed to the Celiac Disease Center at Columbia Univ. Medical Center, Harkness Pavilion, Suite 934, 180 Fort Washington Ave., New York, NY 10032-9803.

 

This lecture was sponsored by the new Shop Rite in Niskayuna. Shop Rite provided samples of gluten free (GF) products and re-usable shopping bags to take them home in, and their dietitian was present for inquiries.
TCDRI Notes
We appreciate our valued members and their continuing support. However, I'd like to make a friendly reminder that this organization exists solely through the efforts of dedicated, un-paid volunteers. Assistance is always needed, even for small tasks. Consider volunteering to make the load on others easier to bear. We are in the process of gearing up for 2012, taking into account the outcome of the 2011 event schedule. Any and all input is welcome - send your comments to upstateceliacs@yahoo.com

Please note that, starting with this newsletter, TCDRI will issue four (4) full newsletters annually:
Late Winter: Early Spring Events & News;
Mid-Spring: Late Spring/Summer Events & News;
Late Summer: Early Fall Events & News; and
Mid-Fall: Late-Fall/Early Winter Events & News.
 
Other months will feature "postcard" newsletters for restaurant events and limited announcements.

 

Roz Spiller
The Celiac Disease Resource, Inc.