Locust Grove Trail Race-5K

This past Thursday, I participated in a 5K Trail Race at Locust Grove in Wappingers Falls. I particularly enjoyed the scenic route that included the Samuel Morse House, beautiful views of the Hudson River, and a challenging uphill climb. Most importantly, I was also able to raise money for Team Gluten Free! I would love to run more races at college next year, and continue to raise money for celiac disease awareness and research. Here are some pictures of the race. I also wanted to say congratulations to my sister for finishing-she did so well!!

Hudson Valley Celiac Support Group Meeting & Ravioli!

A few weeks ago, I was invited by the Hudson Valley Celiac Support Group to speak about My Kidz Gluten Free Products, as well as bring delicious bread samples. Once again, I enjoyed sharing my story with the members of the support group, and loved the opportunity to hear the personal stories of others. I am excited for the support group's potluck in August; I wish I could attend, but unfortunately, I'll be at college.
Upcoming Event: This Thursday, I will be running a local 5K in Dutchess County, New York, and have registered as a member of the Celiac Disease Foundation's Team Gluten Free. The money I raise for the race will be used for scholarships in order to send children to gluten-free summer camps, as well as benefit celiac disease research.
Finally, I wanted to share the gluten-free ravioli my family and I made this weekend. We used a gluten-free all purpose flour and the filling was made using ricotta cheese, Parmesan cheese, eggs, salt, pepper and parsley. Fork marks on the edges kept the filling from falling out (check out the first picture!) They were delicious!

Women's Expo in Kingston

Last Saturday, I was invited to speak at the Women's Health Expo in Kingston, New York. I met with Linda Freeman, founder of the the Hudson Valley Celiac Support Group, as well as Barbara, who handles advocacy and outreach and invited me to speak. We were also joined by Nancy Ginter, Director of Operations of the National Foundation for Celiac Awareness. Established in 2003 by Alice Bast, the National Foundation for Celiac Awareness is a non-profit organization with the goal of promoting universal awareness of celiac disease, and contributing funds to advancements within the field of celiac disease research. Nancy gave a wonderful presentation that touched upon the basics of celiac disease; she provided the audience with important information, such as the definition of the disease, statistics, and ways to pursue a gluten free lifestyle. Finally, Laurie Brown-Halbert, a nurse practiitioner with an immense knowledge of celiac disease, spoke about commong testing procedures for those who want to be tested for celiac disease. A video of my speech is soon to follow!

Nationwide Events for Celiac Disease

May 1st marks the start of National Celiac Disease Awareness Month!
On Friday, May 6th, the University of Chicago will host its 2011 annual benefit program, Spring Flours. This is an opportunity to contribute to future research within the field of celiac disease, as well as sample gluten-free products from over 30 chefs and bakeries. Though I will not be able to attend this event, I believe that this will greatly benefit the celiac disease community. It it inspiring to see the accomplishments that have been made in celiac disease research by the University of Chicago Celiac Disease Center; I eagerly await the future advancements that will be made in this field.
I also wanted to note an event that will be taking place on May 4th in Washington D.C. The American Celiac Disease Alliance will be hosting a gluten-free labeling summit. Though the Food Allergen Labeling and Consumer Protection Act (FALCPA) had included plans to determine and finalize the standards for gluten-free labeling, the FDA has yet to do so. As awareness of celiac disease is increasing nationwide, it is crucial to meet with our country's representatives and find a compromise that will benefit the celiac disease community.
Here is the link for the gluten-free labeling summit: http://www.1in133.org/

Upcoming Event: Women's Health and Fitness Expo

Save the date! The Women's Health and Fitness Expo will be held in Kingston, NY, on May 7, 2011.  I was invited to speak at this event, along with fellow  members of the Hudson Valley Celiac Support Group.  I will provide a teenager's perspective of celiac disease, as well as talk about My Kidz Gluten Free  products, and the Celiac Disease and Allergy Awareness Club at Arlington High School.  
Nancy D. Ginter, Director of Operations for the National Foundation for Celiac Awareness (NFCA) will also present at the Women's Expo.  The National Foundation for Celiac Awareness is a non-profit national entity with the goal of spreading general knowledge of celiac disease by exploring the disease through research, screening patients, and by hosting events throughout the country.  I am eager hear  Ms. Ginter speak about the basics of celiac disease from the NFCA's perspective, as well as learn about the new strides that have been made in celiac disease research.  Hope to see you there!
http://www.womenshealthexpo.com/index.php?option=com_content&task=view&id=74&Itemid=105 

Lecture by Doctor Peter Green

Update on celiac disease:
Doctor Peter Green and author Rory Jones will be giving a lecture on Monday, March 21st at 8:15 p.m., at 92nd Street Y, and Lexington Avenue at 92nd street, New York, New York, 10128. "Gain an understanding of the latest research on celiac disease and gluten sensitivity and why the rate of accurate diagnoses continues to lag in the United States.   Discover the latest advancements pertaining to these complicated conditions that can be diagnosed based upon clinical presentations, specific cereological tests, appropriate genetic testing and response to a gluten-free diet."

Doctor Peter Green established the Celiac Disease Center and is professor of clinical medicine at Columbia University Medical Center, and the author of Celiac Disease: A Hidden Epidemic.
Hope to see many of you there!

Gluten-Free Event Hosted by The Celiac Disease Center at Columbia University

The Celiac Disease Center at Columbia University has done a terrific job organizing events to benefit celiac disease. I have participated in various events put on at the center, many of which catered to teenagers with celiac disease. I have attended a picnic in a Columbia-Presbyterian Hospital courtyard, gone ice skating in Central Park, and was treated to a gluten-free lunch aboard a sailboat traveling the Hudson River. These events have also allowed me to collaborate with teens my age, and have, at times, provided me not only with a gluten-free meal, but a source of support. Columbia's Celiac Disease Center also includes an amalgamation of well-versed gastroenterologists, including the well-known Dr. Peter Green. His book, Celiac Disease: A Hidden Epidemic, has served as my main source of knowledge for the past five years. I was excited to receive this email, detailing another event hosted by the center!

Please join us in Central Park's Wollman Rink
for an ice skating party to benefit the
Celiac Disease Center at Columbia University.
This event is hosted by Emma Teitelbaum.
Date: Sunday, February 27, 2011
Time: 3:30 pm -- 6:00 pm
Location: Wollman Rink, Central Park, New York City
Best entry: 59th street & 6th Avenue. Follow the center path to the rink.

$75 per person includes priority admission to Wollman Rink, skate rental and gluten-free supper available in the Center's private rink side heated party tent.

Please register in advance by completing the attached form and mail to the address below. Please make checks payable to "Trustees of Columbia University"

Celiac Disease Center at Columbia University
Harkness Pavilion
180 Fort Washington Avenue
Suite 934
New York, NY 10032

Pala` Pizza

Yesterday afternoon, my family and I traveled to New York City to celebrate New Years Day at Pala`, a delicious restaurant with an array of gluten-free options, located on Allen Street. Pala` has proved to be not only one of the best tasting gluten-free restaurants, but one of the most conscious ones that I have encountered. Both the waitstaff and kitchen staff are well versed in the care that must be taken in order to ensure that there is no threat of cross-contamination. Our pizza was delivered on a serving board clearly labeled gluten-free, and a dedicated fryer is used when accommodating gluten-free customers. Our appetizers included a proscuitto dish (naturally gluten-free), and potato croquettes, which were breaded in gluten-free breadcrumbs, and fried. For the main courses, I ordered bucatini alla matriciana, a pasta dish complete with pancetta and a spicy tomato sauce, and stole a piece of the gluten-free Inferno pizza from my family. For dessert, I enjoyed a flour-less chocolate cake! I highly recommend Pala` to any celiac visiting New York City because of the level of care that is put into creating both a delicious and safe gluten-free menu. Check out the link to the restaurant to view the menu: http://www.pala-ny.com/
Pictured with me is Phillip, our favorite waiter!

Celiac disease and other autoimmune disorders

I recently read an article by Doctor Alessio Fasano head of the Center for Celiac Disease at the University of Maryland.  Doctor Fasano is one of the leading experts on celiac disease; his research has linked the human protein zonulin to the development of autoimmune diseases such as Type 1 diabetes, celiac disease, and multiple sclerosis. The article centered on the comorbidity between celiac disease and the onset of other various autoimmune disorders.  This article presented two hypotheses; the first proposed that untreated celiac disease leads to the onset of other autoimmune disorders with the existence of a genetic predisposition.  The gliadin-induced inflammatory process that results from a patient with celiac disease who ingests gluten results in antigen "spreading" from further processing of autoantigens.  This has primarily been studied in patients with Type 1 Diabetes.  Studies also found that the prevalence of other autoimmune disorders increased with age.  First degree relatives of those with celiac disease were also at increased risk for other autoimmune disorders.  The second hypothesis proposed the idea that celiac disease and other autoimmune disorders were related because of a linkage disequilibrium.  Unsure of what this meant, I discovered that a linkage disequilibrium is a nonrandom association of alleles at two or more loci.  The association can, however, occur on more than one chromosome.  This presents a condition in which some allele combinations can occur more or less frequently in a population.  Studies performed based on this model found that the increased age of a celiac disease diagnosis corresponded to an increase in other autoimmune conditions.  I found the connections between celiac disease and Type 1 Diabetes particularly interesting.  An early exposure to gluten (in formulas used during the first three months of life) increased the prevalence of islet cell antibodies and the occurrence of Type 1 Diabetes.  The article identified that related autoimmune disorders can be organ specific or non-organ specific.  I would, in the future, like to further explore the genetics behind celiac disease.  There is still so much to discover within the field of genetics; perhaps one day it may be possible to alter our genes and halt the onset of celiac disease.  Doctor Fasano's work with the protein zonulin was particularly interesting; I wonder if there may be an underlying correlation between celiac disease and multiple sclerosis.  I experienced brain demyelination due to malnutrition, and am curious to discover if celiac disease may relate to, or cause m.s., another autoimmune disorder.                     

Vitamin D Deficiency & Fall Festival

After the results of my latest blood test, it was determined that I was Vitamin D deficient. I was confused, as I often try to eat a well-balanced diet, and sit outside in the sun! After some online research, however, I discovered that celiac disease, as well as other autoimmune diseases can also cause a Vitamin D deficiency. This deficiency might also explain my slightly elevated blood sugar levels- more blood tests to figure this out.
I recommend yearly blood tests for those with celiac disease- and for all celiacs to stick to a gluten-free diet; the symptoms may have been much more severe had I not kept track of what I eat.

This past Saturday was the Fall Festival Reimagined at the Poughkeepsie Day School. I once again found a few people with the disease, and many who were familiar with it. I also met one of my sister's classmates with celiac disease; thankfully she enjoyed My Kidz Gluten Free :)

Miles of Hope Craft Show

The Miles of Hope Craft Show, presented by the Dutchess Chapter of the Women's Council of Realtors, was a huge success! All admission donations benefited Miles of Hope, as well as the raffles that many of the vendors contributed too. I made a gluten-free basket, full of pasta, baking mixes, cookies and PEEPS! I met many people with celiac, all eager to try My Kidz. It was surprising as to how many people knew someone else with celiac disease.
I also met Regina, the owner of another local company called Gourmetibles. She just launched a gluten-free line of her products! I tried her gluten-free PB and Pretzel candy- it was delicious! Check out their website: http://www.gourmetible.com/cart/

Gluten-Free at Nature's Pantry

My sister and I checking out My Kidz Gluten Free Products at Nature's Pantry in Fishkill, NY.
Don't forget- Craft Show next week- My Kidz will be there!

Upcoming Events

Upcoming events for My Kidz Gluten-Free Products
1. October 21st- Women's Council of Realtors Dutchess County Chapter 2010 Craft Show.
http://milesofhope.org/news/tag/event/ (Read the flyer- Gluten-Free Bread Loaves!)
Event will benefit the "Miles of Hope Breast Cancer Foundation"
2. November 20th- Poughkeepsie Day School Fall Festival
http://www.poughkeepsieday.org/newsStory.aspx?pageId=79646
HOPE TO SEE YOU THERE!

Hudson Valley Fresh

As a teen with celiac disease, I have become increasingly conscious of the foods I consume. Not only does this awareness include gluten-free products, but also includes the types of milk we drink. The Recombinant Bovine Growth Hormone (rBGH) is a genetically engineered hormone injected into cows in order to increase milk production. Many companies continue to use rBGH, even though groups have begun to take notice of the adverse effects of the hormone. The Recombinant Bovine Growth Hormone has been shown to stimulate increased production of the Insulin-like Growth Factor (IGF-I), a hormone in humans that promotes childhood growth and also plays a role in adult metabolism. Date has also emerged that shows correlations between increased levels of the Insulin-like Growth factor and cancers. For example, IFG-I has been shown to serve as a mitogen for prostate cells, and unchecked cell growth results in cancer.
These larger companies not only add unnecessary chemicals to their milk, but mistreat the cows as well. Cows are kept in large facilities with little space and grazing areas. Conditions are often unclean, and it is fairly easy for a sick cow to continue to give milk, even though she should be quarantined.
Local economies are damaged as well. Small dairy farmers lose business and are unable to keep their farms running.
Hudson Valley Fresh is a local, profit-free milk cooperative. The company receives their milk from less than ten dairy families. There is no mixing of the milk, and the company assures its customers that no antibiotics or hormones are added. Furthermore, Hudson Valley Fresh promotes the local economy, as each cow brings $15,000 into the economy each year.
With the help of Arlington High School's principal, Dr. Lyons, I am trying to collaborate with the kitchen management. We hope to institure the sale of Hudson Valley Fresh by next year.
Last Wednesday I visited Plankenhorn Farms, a local dairy farm run by Dr. Sam Simon, one of the founders of Hudson Valley Fresh.

Breakfast of Champions

Today, the Dutchess County Regional Chamber of Commerce held the "Breakfast of Champions", which took place at the Mid-Hudson Civic Center in Poughkeepsie, NY.
One local deli, Cucina D'Amore, located on Titusville Road, sells my bread fresh every Friday, and the owner, George, asked us to share a booth with him during this event. His many Boars Head Products are a perfect gluten free compliment for my bread. There were approximately 1,400 people at the event, and since 1 out of every 133 people has celiac disease, we met several celiacs.
Pictured with me is George, owner of Cucina D'Amore and his son.

5K for Celiac!

This past Saturday, June 12th, I participated in the Treetops to Rooftops 5K that took place on the Walkway Over the Hudson. I ran for celiac disease, along with my guidance counsler Mrs. Miller, and Mrs. Sotland and her family. My finishing time was 32:08, and I collected approximately $200.00, which will be donated to the University of Chicago Celiac Disease Center. My guidance counsler, Mrs. Miller, pictured with me, was instrumental in helping with this event.

Gluten-Free Tasting at Nature's Pantry

Last Sunday, I was invited to visit Nature's Pantry in Newburgh, NY, for a taste testing of my gluten-free bread (My Kidz!). It was a nice way to promote awareness about the disease, as well as give those with celiac a chance to sample some products. We were also joined by Heidi's Gluten-Free Greatness. Heidi's company is also local. Her brownies were delicious!
Hopefully we will be able to do another taste-testing soon!

Rock Da Pasta

The Hudson Valley Celiac Support Group was visited by Judy Steele, owner of New Paltz's Rock Da Pasta, a restaurant that offers delicious gluten-free pasta. I tried the restaurant's pesto pasta and garlic bread. The flavor was delicious! I was also glad to hear that Judy uses local and organic produce, which is often healthier, and also promotes the local economy.

My Story

Hello. My name is Chynna, and I am a 16 year-old teen living with celiac disease. My story, however, begins a few years ago, the summer before seventh grade. During my yearly checkup, my pediatrician noticed that I had experienced total growth arrest. My mother had noticed that something was wrong earlier (I frequently stumbled, and had terrible headaches), but her ideas were often dismissed. Thus, my family and I began a journey that included various hospital visits throughout the northeast. An M.R.I. indicated demyelination, or the fraying of the myelin sheaths on my cerebellum. The doctors we visited warned us of the possibility of tumors and M.S., both of which could have impaired my growth. However, after several months of many visits to the doctor, a wonderful endocrinologist decided to test me for celiac disease. Finally, we had an answer!
Our family was relieved by this diagnosis. Celiac disease can be easily managed, as long as one adheres to a gluten-free diet for the rest of their life. My headaches were not as severe and I grew several inches in only a year and a half.
I decided to embrace my disease, instead of hiding celiac from the world. After a few years of experimenting with different recipes, my family and I came up with the ideal bread recipe. I have started a bread company, My Kidz Gluten Free Products. The company sells at various health food stores in Dutchess County, New York.
I started this bread company in order to provide those with celiac (and primarily, young children), with a gluten-free bread that tasted no different from a slice of "wheat bread". No one should feel alienated at a party, or at school, because of their specialized diet.
My goal is to continue to increase awareness not only in Dutchess County, but throughout the country.