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These Girls Are Mensches!

6/4/2010

Sara and Emma give the term “dynamic duo” new meaning!  This pair of energetic 7th and 8th grade students has dedicated themselves to raising awareness of celiac disease within their communities in a very special way.

The story of Emma’s and Sara’s meeting is right out of Six Degrees of Separation.  Sara is an avid figure skater and skates competitively for a team in her area. As it turns out, Emma’s pediatrician’s daughter is on Sara’s skating team.  About 1 ½ years ago, this pediatrician asked Emma’s mother if another patient’s family, Sara’s family, could contact her regarding the
gluten-free diet for their newly diagnosed daughter. The two mothers met for lunch and the rest is history.  

Sara and Emma met, and after much discussion, decided to do their Bat Mitzvah social action project together.  And, they selected raising awareness of celiac disease as the focus of their program.

Girl power took over immediately!  Sara and Emma contacted a number of manufacturers and distributors of gluten-free food hoping to use their products and their facilities to introduce the gluten-free diet to their communities. No one seemed to want 12-year-old girls to give out “medical information”.  

Enter the Internet and NFCA!  Sara and Emma did a search, found NFCA and contacted us with their ideas.  Enthused about this Bat Mitzvah project, NFCA sent the girls copies of the Do I Have Celiac brochure to distribute. While they appreciated the information included in this symptom checklist and accompanying recommended tests, they felt that the images were too somber. They asked NFCA if they could redesign the brochure to make it more appealing, especially to a younger audience. They got to work and the result is a “new look” for celiac!   

Sara’s Bat Mitzvah was on October 27, 2007 and Emma is looking forward to her special day on March 22, 2008.  The newly designed brochures were previewed at Sara’s Bat Mitzvah and will be distributed at Emma’s Bat Mitzvah.  The guests will hear about celiac disease, its prevalence in the United States, and learn about the most common symptoms that identify a celiac patient.  Emma will highlight the 3 million Americans who have celiac disease and emphasize that 97% of these patients do not know that they have it. And, she will stress that the most important thing for those with celiac is to understand that they must stay on a gluten-free diet to prevent serious health problems.

Emma plans to distribute this newly designed brochure to school nurses as a key point in the identification of celiac for young people. Sara will distribute the brochures to doctors in her community. Both girls believe that this project has helped them better understand celiac disease. As Sara put it, “It has opened my horizons.”  Sara has developed more respect for food allergies and both are much more aware of the impact of celiac disease than before they started this program.  

The thread of celiac runs through both of these families, a clear demonstration that this autoimmune disease has a genetic base.  Emma’s mother was diagnosed with celiac disease in 2003. Soon after, the two older Siegel children, now 19 and 16 years old, were diagnosed. Emma tests negative for celiac but she does have the gene. Sara’s father and younger sister also have celiac disease. In fact, many members of these families have been tested as a precaution.  

Emma’s mother, Laura, is a good example of the need for greater understanding of celiac.  She was diagnosed with celiac disease as a child. Her family and her doctor thought that she had “outgrown” it. When she discovered that she had osteoporosis later in life, she pursued getting tested for celiac as the possible cause. It took undergoing many other tests and real persuasion on Laura’s part to get the test and, once again, learn that she has celiac disease.

Before Sara was diagnosed, she was fatigued constantly, was “undergrown” for her age and was not growing. She had the trademark distended abdomen and was not a happy young lady.  After her diagnosis following a suggestion by an endocrinologist, Sara felt better within six months.

Sara believes that having celiac disease is “not much of a problem”. You just have to change your eating habits. “There definitely is good food out there.” She admits, however, that this is not quite so easy when traveling with her skating team. Her favorite place to eat on the road is Fire & Ice, a restaurant with a gluten-free menu in Providence. And, she loves the gluten-free pizza crust at a local pizza place near her home.
 
When asked about maintaining a gluten-free diet at school, Sara explained that she brings her lunch to school each day to eliminate the possibility of getting gluten accidentally through cross-contamination. When she was required to take a cooking class, she wore gloves to insure that she would be safe. Emma’s older sister has a stash of gluten-free snacks in her room at college to be on the safe side. And, of course, family meals are gluten-free. Emma maintains a vegetarian diet. Sara’s sister wants to open a gluten-free bakery featuring scones, along with other delicious gluten-free items based on Rachael Ray’s cooking.  

Like so many others, Emma and Sara both wish there were a pill that would allow people with celiac disease to eat all foods or, as they say, so that “Everyone could eat normally”.  Emma also suggested that there could be a pill that would stimulate growth of villi allowing celiacs to recover from eating gluten.

NFCA heartily thanks Emma and Sara for their creativity and their dedication. Their energy and passion guarantees that celiac disease is well on it way to becoming a household word wherever these young ladies go. While Emma hopes to be a lawyer and Sara plans to become a fashion designer, we know that raising awareness of celiac disease will be an important part of their lives forever.  

 

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