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Celiac Solutions Newsletter Fall

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					                                  Celiac Solutions
                                      NEWS LETTER OF THE KOGAN C ELI AC CENTER
                                      T HE S A I N T B A R NABA S HEA L TH C AR E S YS TEM
                                  V O L U M E         1 ,       I S S U E    2                                                 F A L L   2 0 0 8




                                  Gluten Free Awareness in Schools
                             The task of increasing awareness about celiac
                             disease doesn’t stop with getting more people
                             diagnosed – education about the importance of
                             the gluten free diet and its challenges within
                             the scope of daily activities is just as important.
                             Parents of children with celiac disease will be
 INSIDE THIS                 happy to hear about the progress being made to
    ISSUE:                   educate personnel in schools, not only in our
                             own backyard but on a national level as well.

   Awareness in 1            On Monday, October 13, the Board of
   Schools                   Education of the Washington Township Public
   Welcome!       2          Schools hosted a district-wide professional day
                             and featured a presentation about celiac disease to guide parents through the complicated
   SBHCS goes
                                                                              process of getting dietary accommodations
                  3
   gluten free!
                                                                              for their children when they are in school.
                                  Give us a call if your school is            On their website you can find the results of a
   Sorghum        3               interested in learning about                survey they conducted over the summer
   Muffins
                                  celiac disease and the services             about gluten free offerings in schools across
   GF in Busch    4                                                           the country, as well as recommendations and
   Gardens!                       of the Kogan Celiac Center
                                                                              sample documents that can be used when
   Support        5                                                           establishing and serving the dietary needs of
   Group Recap               by Margaret Weiss Masiello, RD, Clinical         a gluten free diet within the school
   Reader Mail-   5          Coordinator of the Kogan Celiac Center.          setting.
   bag                       School administrators and nurses learned         The USDA is also accepting comments as
   Before You     6          up-to-date information about symptoms, early they consider possible additions to the
   Cut Back                  diagnosis, the gluten free diet, and the         National School Lunch Program. The
                             education and support services provided by the National Foundation for Celiac Awareness
                             Center. This presentation, and others like it    (www.celiaccentral.org) has information
                             scheduled in similar venues throughout the       about how you can submit your input about
                             state this fall, are part of the Center’s        including gluten free school lunches for
                             continuing mission to improve the health and     those who need them.
                             well being of those who live with this
                             autoimmune disorder.                             If you are interested in more information
                                                                              about how a gluten free diet can be followed
                             Nationally, the American Celiac Disease          in schools, please call the Kogan Celiac
                             Alliance (www.americanceliac.org) is working Center at 973-322-7272.


C E L I A C   S O L U T I O N S   *    F A L L   2 0 0 8    *    9 7 3 - 3 2 2 - 7 2 7 2   *   W W W . K O G A N C E L I A C C E N T E R . C O M
THE     KOGAN         CELIAC           CENTER          OF         THE       SAINT          BARNABAS          HEALTH        CARE      SYSTEM
                        PAGE          2
                                             Welcome to Celiac Solutions
                                           Welcome to Celiac         Most have heard that                                 recipe for muffins that
                                           Solutions, Issue 2!       Disney in Orlando is                                 are certain to pass
                                                                     very celiac-friendly,                                muster with even the
                                           Summer is over, school but have you heard                                      most discriminating
                                           has started and the       that Busch Gardens in                                palates!
    Celiac Solutions
                                           Kogan Celiac Center is Williamsburg is
    A publication by                       in full swing! We are     making an effort to                                  Here at the Center we
The Kogan Celiac Center
 of the Saint Barnabas                     seeing lots of            accommodate the                                      get lots of questions
  Health Care System
                                           enrollment in our         gluten free diet as                                  that pertain to
              Editor                       dietary education         well? Read a                                         diagnosis, support
 Margaret Weiss Masiello, RD
    Clinical Coordinator
                                           program, new faces at chronicle from one of                                    and, of course, the
  The Kogan Celiac Center                  support group meetings our support group                                       gluten free diet. If you
    Design and Editorial                   and more plans for        members on page 4                                    have a question that
       Contributors
                                           awareness seminars in that describes their                                     you think suitable for
       Carrie Bogart, RN
       Nurse Executive                     schools and business      experience in this                                   our Reader Mailbag
  Saint Barnabas Ambulatory
          Care Center                      settings – all working    wonderful vacation                                   (see Page 5), submit it
     Nancy Edelmann, RN
                                           towards our mission of spot.                                                   to us either by phone
   Administrative Director
Saint Barnabas Rehabilitation
                                           providing a single-                                                            or online. Who knows,
          Services
                                           source, evidence-based Our efforts to offer                                    others may be
  Medical Advisory Board                   support initiative for    safe gluten free                                     wondering the same
        Glen Mogan, MD
      Gastroenterologist
                                           people with celiac        selections to patients                               things too!
   Director, Medical Affairs
  Saint Barnabas Ambulatory
                                           disease in New Jersey. and guests throughout
          Care Center                      We are looking forward the entire Saint                                        Keep checking our
     Francis Sunaryo, MD                   to continued growth       Barnabas Health Care                                 website for updates
      Gastroenterologist
           Director                        and expansion.            System are underway.                                 about our activities
 Pediatric Gastroenterology
Saint Barnabas Medical Center                                        See page 3 for details!                              and events. We also
 Children’s Hospital of NJ at
 Newark Beth Isreal Medical                Awareness in schools                                                           welcome suggestions
            Center
                                           about the needs of        Support groups over                                  and comments about
 200 South Orange Avenue
  Livingston, New Jersey                   children with celiac      the summer had a                                     this newsletter—what
            07039
www.koganceliaccenter.com
                                           disease is growing. See chance to sample a                                     changes can we make
   Phone: 973-322-7272                     Page 1 for information few recipes made with                                   to fit YOUR needs?
      Fax: 973-322-7528
                                           about work that is        some new and inter-
                                           being done both on a      esting gluten free
                                           national level as well as grains. Included on
                                           in our own backyard.      Page 3 is a great



C E L I A C   S O L U T I O N S   *       F A L L   2 0 0 8   *   9 7 3 - 3 2 2 - 7 2 7 2   *   W W W . K O G A N C E L I A C C E N T E R . C O M
THE     KOGAN          CELIAC             CENTER          OF      THE       SAINT           BARNABAS          HEALTH        CARE      SYSTEM
      GF Certification Program                                                                                                        PAGE      3




      As part of our mission to provide expert                                  annual updating. The Center will act as the
      services that include early assessment,                                   focal point for this initiative by overseeing the
      diagnosis, treatment, education and support to                            implementation of the protocol, documenting
      improve the health and well being of those who                            competencies and disseminating current and
      live with celiac disease, the Kogan Celiac                                updated information. Once the training and
      Center of the Saint Barnabas Health Care                                  implementation is complete, we will be certified
      System has begun implementing gluten free                                 by the National Foundation for Celiac
      menu selections for patients and guests in every                          Awareness, a premier national support
      one of its 6 acute-care hospitals and 9 long–                             organization dedicated to raising awareness and
      and short-term rehab centers throughout the                               funding for celiac disease.
      state of New Jersey.
                                                                                Comprehensive planning for this initiative
      All healthcare providers who are in contact                               started in early summer – look for kitchens and
      with patients (nurses, dietitians, pharmacists,                           dietitians in all facilities to begin the
      foodservice personnel, physical and                                       certification process in early November, with the
      occupational therapists) are included in this                             remaining staff beginning implementation in
      initiative and will undergo training via online                           very early 2009!
      learning modules, competency exams and


  .   Sorghum Applesauce Oatmeal Muffins*
  Ingredients                     Streusel Topping
  ½ cup butter                    pinch of salt
  ¾ cup brown sugar, packed       ¼ cup butter
  1 egg                           ½ cup sugar
  ¼ milk                          1 teaspoon xanthan gum
  1 cup sorghum flour             ½ cup sorghum flour
  ¾ tsp cinnamon
  1 tsp baking powder      Heat oven to 350o F. Cream the butter; add the brown sugar;
  ¼ tsp baking soda        cream until light and fluffy. Add the egg and milk, beat well.
  ¼ tsp salt               Mix dry ingredients and add alternately with the applesauce
  1 cup applesauce         to the creamed mixture, stirring well. Add the remaining in-
  ½ cup golden raisins     gredients. Spoon into well-greased muffin cups. Top with
  1 cup gluten free oats   streusel topping. Bake 30 minutes.

  *(developed by Barbara Kliment, Executive Director, Nebraska Grain Sorghum Board
  www.sorghum.state.ne.us/)



C E L I A C   S O L U T I O N S   *   F A L L   2 0 0 8   *   9 7 3 - 3 2 2 - 7 2 7 2   *   W W W . K O G A N C E L I A C C E N T E R . C O M
THE     KOGAN         CELIAC          CENTER          OF      THE       SAINT           BARNABAS          HEALTH        CARE      SYSTEM
                                         A Vacation to Remember
               PAGE      4




                                         As most people with                    Prior to the trip, the Ko-        serving utensils.The
                                         celiac disease know,                   gan Celiac Center called          Outback Restaurant in
                                         traveling is one of the                the dietary department in         Williamsburg
                                         most challenging aspects               the park and confirmed a          (www.outback.com) was
                                         of a gluten free lifestyle.            list of gluten free foods         “as wonderful as the one
                                         Refrigeration, storage,                that are available in the         we go to in NJ,” and the
                                         cross contamination and                park itself (see below).          nearby Ukrops grocery
                                         airline restrictions are all           Incredibly, one of the            store (www.ukrops.com)
                     Call                issues that must be                    chefs in this department          is a large, specialty foods
                                         confronted. Equally                    runs a local celiac               store that has a good
       1-888-724-7123                    important, gluten free                 support group—what a              selection of gluten free
                                         travelers want to have                 small world we live in!           food. In general, the trip
      to register for an
                                                                                She was able to confirm           was deemed a success,
    upcoming support                      “It was easier than we                the ingredients of every          they all “felt fine during
                                          thought!”                             item in the park, giving          the whole trip,” and “felt
        group meeting!                                                          our family a good level           confident reading food
                                         fun and enjoy themselves               of detail and confidence          labels” as a result of all
                                         too! Here, a family from               as they enjoyed the               of our discussions at
                                         our children’s support                 attractions: first in             support group meetings.
                                         group shared their                     Grogan’s Grill where “it
                                         wonderful, celiac-                     was easier than we                 Gluten Free Choices in
                                         friendly experience at                 thought!” and on the                  Busch Gardens
                                         Busch Gardens in                       second day in Trapper’s               (Williamsburg)
                                         Williamsburg where they                Smokehouse when “we
                                         vacationed this past                   had more confidence and           Grogan’s Grill – speak
                                         August.                                brought fewer snacks              with the manager to find
                                                                                with us.” In both                 out the GF daily specials
                                         Accommodations at the                                                    Trapper’s Smokehouse –
                                                                                locations, our family
                                         Kingsmill Resort and Spa                                                 Grilled chicken and ribs
                                                                                “bypassed the regular
          Send us your                   were comfortable and
                                                                                line,” and asked for a            (with BBQ sauce) are GF
                                         clean with an efficiency
       suggestions and                                                          manager, who was ready,           (but the individual
                                         kitchen, perfect to store                                                 packets of BBQ sauce
                                                                                willing and able to
      comments about                     and prepare dairy items
                                                                                discuss gluten free               are NOT)
                                         and breakfast food. Some                                                 Throughout the park –
      this newsletter—                                                          options and serve the
                                         “just in case” items were                                                Hamburgers (without the
                                                                                plates straight from the
     what changes can                    brought from home:                                                       bun), Icy Drinks, Soft
                                                                                kitchen to avoid cross
                                         Annie’s Mac & Cheese,                                                    Serve Ice Cream are GF
                                                                                contamination with
        we make to fit                   frozen pancakes and                                                      Personal Coolers – OK
                                         waffles, Foods by George
          YOUR needs?                                                                                             to bring into the park –
                                         pizzas, cereal. The resort                                               they will store them in a
                                         itself has six restaurants                                               refrigerator for you.
                                         on site, and they were
                                         very forthcoming with                                                     Won’t you share your
                                         ingredient lists and help                                                   latest traveling
                                         with cross-contamination                                                      experience?
                                         protocol.




C E L I A C   S O L U T I O N S   *   F A L L   2 0 0 8   *   9 7 3 - 3 2 2 - 7 2 7 2   *   W W W . K O G A N C E L I A C C E N T E R . C O M
THE     KOGAN         CELIAC          CENTER          OF      THE       SAINT           BARNABAS          HEALTH        CARE      SYSTEM
Support Group Minutes                                                                                                                 PAGE      5



Check out Joan’s Great Bakes for English muffins, bagels and pizza
crust “like the real thing,” www.gfgreatbakes.com . . . A really great
place to see what’s new out there is the “New Products” tab at
www.glutenfreemall.com; recent finds there are GF licorice whips, gra-
nola bars and crisped rice chocolate bars . . . If you’re tired of rice and
corn side dishes, try some gluten free grains off the beaten path. In July,
our support groups tried dishes prepared with millet, sorghum and qui-
noa and loved them . . . Until now, most gluten free products were made
with highly refined flours and lacked the enrichment of important vita-
mins, minerals and fiber that their gluten-containing counterparts enjoyed. Some gluten free
manufacturers are enriching their products now, keep an eye on those labels to find out which ones . . .
Most blogs and listservs are not considered consistent and reliable sources of information, but there is
one out there now that you can rely on: Tricia Thompson’s blog on www.diet.com, posted weekly on
Tuesday mornings . . . . . . Calling all teens! Are you or do you know of a teen with celiac disease?
Give us a call and let us know your availability, this group is starting . . . Lots of discussion about
diseases and conditions related to celiac disease; did you know that although 3 percent of the general
population is affected by autoimmune disorders, it is believed that approximately 30 percent of
individuals with celiac disease are affected? Discuss with your healthcare provider your need to be
screened accordingly . . .

Please note these changes to the support group schedule: November support meeting FOR ALL
GROUPS will be at 6:30pm on November 11 (“Dealing with Feelings of Deprivation” with Clinical
Psychologist Dr. Gary Goldberg) and the December meeting FOR ALL GROUPS will be at 6pm on
December 8th (Holiday Food Expo and presentation by author and poet Jax Peters Lowell). Groups
will not meet at their regular meeting times for these two months! Don’t forget to register for these
exiting events at 1-888-724-7123!

                                                Q. I was diagnosed 6 months ago by chance (I was asymptomatic) and went
Reader Mailbag                                  on the gluten free diet. The diet was very depressing and I went off of it several
                                                times and experienced no celiac-related symptoms. Are there any studies about
                                                NOT following a gluten free diet and still living a healthy life?
                                                A. Studies have shown that undiagnosed celiacs (or non-compliant ones) are
                                                at an elevated risk for developing other autoimmune conditions and/or
                                                lymphoma. Even without symptoms, an individual with celiac disease still
                                                experiences the stimulation of the immune system and the intestinal damage
                                                that is responsible for the risks and conditions mentioned above. It is strongly
                                                recommended that all diagnosed individuals follow a strict, lifelong gluten free
                                                diet. The Kogan Celiac Center of the Saint Barnabas Health Care System offers
                                                free monthly support groups that are geared towards improving the lifestyle of
                                                individuals with celiac disease and we strongly urge you to take advantage of
                                                what could be a very helpful part of your treatment.



C E L I A C   S O L U T I O N S   *   F A L L   2 0 0 8   *   9 7 3 - 3 2 2 - 7 2 7 2   *   W W W . K O G A N C E L I A C C E N T E R . C O M
THE     KOGAN         CELIAC          CENTER          OF      THE       SAINT           BARNABAS          HEALTH        CARE      SYSTEM
                                                                               The Kogan Celiac Center of the Saint Barnabas
                                                                               Health Care System offers comprehensive
                                                                               testing and treatment for celiac disease for
                                                                               adults and children. The Center is dedicated to
                                                                               providing expert services that include early
                                                                               assessment and diagnosis, treatment,
              The Kogan Celiac Center
                                                                               education and support to improve the health
              Saint Barnabas Health Care System
                                                                               and well being of those who live with celiac
              200 South Orange Avenue
              Livingston, New Jersey 07039                                     disease.
                                                                               Services include:
              Phone: 973-322-7272
              Fax: 973-322-7528                                                •    Initial screening and diagnosis
              E-mail: koganceliaccenter@sbhcs.com                              •    Initial and ongoing nutrition counseling
              Website: www.koganceliaccenter.com
                                                                               •    Support groups and education

                                                                               •    Physician Referral


        The Kogan Celiac Center of the Saint Barnabas Health Care System is made possible
                  through the generous support of Mr. and Mrs. Richard Kogan.



                       Before You Cut Back, Test for Celiac!
  It is often tempting to “try” a                                                                      the Kogan Celiac Center, we
  gluten free diet if you feel that                                                                    strongly advise individuals to wait
  you have symptoms of celiac                                                                          until they have been positively
  disease, such as diarrhea,                                                                           diagnosed with celiac disease
  change in bowel habits, nausea,                                                                      through currently accepted and
  abdominal bloating, failure to                                                                       established protocols before
  thrive, fatigue, anemia,,                                                                            implementing a gluten free diet.
  infertility, joint pain, depression
  or irritability. If you do have
                                                                                                       Information regarding current
  celiac disease when you do this,
                                                                                                       diagnostic protocols, screening
  you may see a noticeable                        affect the presence of antibodies
                                                                                                       opportunities through our
  improvement of symptoms                         in your blood and/or the kind of
                                                                                                       Center, and dietary education
  because you will stop or slow                   damage in the small intestine that
                                                                                                       can be found on our website
  down the inflammatory process                   we look for in order to diagnose
                                                                                                       (www.koganceliaccenter.com) or
  that is characteristic of this                  this disease. As a result, screening
                                                                                                       by calling us at 973-322-7272.
  disease. However, you will also                 or testing may be inaccurate. At

C E L I A C   S O L U T I O N S   *   F A L L   2 0 0 8   *   9 7 3 - 3 2 2 - 7 2 7 2   *   W W W . K O G A N C E L I A C C E N T E R . C O M
THE     KOGAN         CELIAC          CENTER          OF      THE       SAINT           BARNABAS          HEALTH        CARE      SYSTEM

				
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