Celiac Disease and Gluten Sensitivity Center

Stony Brook University Medical Center

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    The Celiac Disease and Gluten Sensitivity Center is the only center on Long Island specializing in the comprehensive diagnosis and treatment of children with celiac disease and gluten sensitivities.


    This new specialty center is built on the foundation of more than a decade’s experience of treating children with celiac disease. The center has been designed to meet the growing incidence of celiac disease in Suffolk and Nassau counties. It brings all our experts and expertise into one place so that patients and families can receive comprehensive and accessible services that include diagnosis, treatment, management and support. We take a multidisciplinary, whole child approach, which means that we not only treat the disease or the gluten sensitivity, but every aspect of your child’s health — the physical, social and emotional aspects of the disease.


     


    Contact Us


    Celiac Disease and Gluten Sensitivity Center
    Stony Brook Children’s
    4 Technology Drive, East Setauket, NY 11733
    Phone: (631) 444-8115
    Fax: (631) 444-6045


    For appointments, call (631) 444-KIDS


     


    Our Team


    The team is led by board-certified pediatric gastroenterologists (physicians who specialize in diseases of the digestive tracts of children) and includes highly trained nurse practitioners as well as a registered dietitian. This last specialist is particularly important because treatment of celiac disease revolves around making dietary changes. She educates families and children on food choices, shares eating strategies and recipes, reviews shopping tips and provides ongoing support.


    Pediatric Celiac Disease Team Members:


    Anupama Chawla, MD - Director


    James Brief, MD (first year fellow)


    Michelle Edelman, MD (second year fellow)


    Grace Gathungu, MD


    Sameer Lapsia, MD (third year fellow)


    Rupinder Gill, MD


    Jeffrey Morganstern, MD


    Deborah Salvatore, MS, RD, CDN


    Janet Difalco, RN, CPNP


    Kathy Usmani, RN, CPNP


     


    Supporting Specialists:


    In some children, celiac disease may affect other body systems or other aspects of their health. Because we take an approach that supports the total health of your child, we make the following experts available to you if needed. They, too, become part of your child’s care team. These supporting specialties include:


    Allergy and Immunology


    Developmental and Behavioral Health


    Endocrinology


     


    Services:
    Assessment and Diagnosis


    Celiac disease can be difficult to diagnose because symptoms vary greatly and may be similar to other diseases. It can present along a wide spectrum, which is why the Center also works with children with gluten sensitivities – for example, children whose symptoms may not fit all the criteria for a celiac disease diagnosis but who may be helped by managing their intolerance or sensitivity to foods containing gluten.


    At the Center, we use several diagnostic approaches. One is a simple blood test to check for the presence of several antibodies that may indicate gluten intolerance. This is a quick and painless procedure, and can be done on an outpatient basis at a laboratory.


    If further testing is needed, the doctor may perform an upper endoscopy. This is a minimally invasive procedure in which a doctor uses a slender tube inserted through the mouth to take a tiny sample of the small intestine for further examination. Your child will be asleep throughout and will awaken with no memory of the procedure or lingering after effects. Pediatric endoscopy is performed at the endoscopy center at Stony Brook University Hospital.  A dedicated team of pediatric anesthesiologists and nurses will provide anesthesia and care for your child during the procedure.


     


    Treatment and Management


    If celiac disease or a gluten sensitivity is confirmed, you and your child will meet with our registered dietitian for a nutrition evaluation and education session. Although several new therapies are under investigation, currently, the only treatment for celiac disease is to remove all gluten from your child’s diet. In fact, the gluten-free diet will help to heal the damage to the small intestine over time.


    During these sessions, we will work closely with you to put these new dietary guidelines into action. This includes comprehensive lists of what your child can eat and what is toxic to his or her system, shopping guidelines, how to read labels for hidden gluten, recipes and strategies for eating at restaurants. We can also coach you on how to talk with teachers, other parents and your child’s friends about their food requirements, as well as how to integrate a gluten-free sensibility into your family’s day-to-day lives.


    In the short term, we will give you all the support your family needs, as well as refer you to community resources and other specialties if necessary.


    In the long term, we will follow your child through adulthood, doing routine assessments, plus periodic nutritional analysis, dietary intake and laboratory screenings.  These routine assessments will ensure that your child is receiving optimal nutrition benefits from his or her diet, with an additional focus on growth and optimizing bone health. Because people with celiac disease need to follow a gluten-free diet for life, we will stay connected with your child, helping them stay on course as they grow and their taste and nutrition requirements evolve.


    It may sound difficult to completely change your child or your family’s diet, but keep in mind that this treatment is extraordinarily safe for your child, involving no surgical intervention, medications and side effects. 


     


    Frequently Asked Questions


    What are the symptoms of celiac disease or gluten sensitivity?


    Typically, children and adolescents will be tested for celiac disease if they have persistent diarrhea and failure to thrive. Other symptoms include abdominal pain, abdominal distention, bloating, constipation, unexplained anemia, vomiting, anorexia, loss of subcutaneous fat, symptoms consistent with irritable bowel syndrome and delayed puberty.


    Children with certain medical conditions, including dermatitis herpetiformis, Down Syndrome, immunoglobin A (IgA) deficiency, Type I diabetes, Turner syndrome, hypothyroidism, dental enamel defects and Williams syndrome, may also have a greater prevalence of celiac disease.


     


    I’m concerned about handling such a dramatic change in my family’s eating habits — where do I even start?


    Yes, changing to a gluten-free diet takes some work, but experts at Stony Brook’s Celiac Disease and Gluten Sensitivity Center will support you during this transition. We can help you with everything from recipes and reading labels to restaurant strategies.


     


    I’m also concerned about my child being singled out or feeling left out at social occasions because of dietary restrictions.


    That is a legitimate concern, but also something the team can help you with. Remember, children are remarkably adaptable, and once they understand what they can and cannot eat, they tend to follow through because they feel so much better and no longer get sick all the time. However, birthday parties and other social occasions can sometimes be challenging. The key is planning ahead. We help you find ways to talk to other parents in advance about your child’s dietary needs , find substitutions for traditional celebratory foods and give you other tips for navigating these kind of situations.


     


    Dietary Guidelines


    Label Reading


    Learning to read labels is one of the most important strategies in ensuring a gluten-free diet. If a product contains wheat, it will be clearly stated.  You also need to watch for rye and barley ingredients, unless they are labeled as gluten free. See the accompanying lists for what to avoid.


    Grains to Avoid


    Wheat


    Atta
    Bulgur
    Couscous
    Durum
    Einkorn
    Emmer
    Farina
    Fu
    Graham flour
    Hydrolyzed wheat protein
    Kamut
    Matzo, matzo meal
    Modified wheat starch
    Seitan
    Semolina
    Spelt/dinkel/faro/faro
    Triticale
    Wheat bran, flour, germ or starch


    Barley


    Ale
    Barley
    Beer
    Brewer’s yeast
    Lager
    Malt
    Malt extract/malt syrup/malt flavoring
    Malt vinegar
    Malted milk


    Rye


    Rye bread
    Rye flour


    Hidden Gluten Sources


    Broth
    Candy
    Communion wafers
    Imitation bacon/seafood
    Lipstick/lip gloss/lip balm
    Luncheon meats
    Marinades and thickeners
    Medications (check with your pharmacist)
    Sauces
    Soup bases
    Soy sauce
    Vitamin and mineral supplements


    Allowed Grains


    Amaranth
    Arrowroot
    Buckwheat (100%)
    Corn bran, corn flour
    Cornmeal
    Cornstarch
    Flax
    Legume flours (bean, chickpea, lentil, pea)
    Mesquite flour
    Millet
    Montina flour
    Nut flours
    Potato flour
    Potato starch
    Oats/oat flour (gluten-free)
    Quinoa
    Rice bran/rice flours
    Rice polish
    Sago
    Sorghum flour
    Soy flour
    Sweet potato flour
    Tapioca
    Taro
    Teff
    Wild rice


    Safe Additives and Ingredients


    Baker’s yeast
    Caramel coloring
    Maltodextrin
    Modified food starch (except wheat)
    Monosodium glutamate (MSG)
    Starches (except wheat)


     


    Research and Education


    Because Stony Brook is an academic medical center committed to advancing both the practice and study of medicine, our staff also participates in celiac disease research. Active projects include examination of migraines and celiac a disease and obesity and celiac disease.