Whether you were diagnosed 17 years ago, like me, or are newly diagnosed, a trip to Children's Hospital of Philadelphia's annual Celiac Education Day is worth the trip. And there WAS a healthy mix of longtime-Celiacs and newbies, all asking questions and interacting with one another as a united front for facing this condition.
Hosted by CHOP Celiac Center Director Dr. Ritu Verma, the informational lectures were interesting and quick.She started off welcoming the crowd, and mentioned that the children's hospital is partnered with its neighbor Penn Medicine to provide Celiac Disease services to patients of all ages.
And there were plenty of highlights.
 |
| Photo/GFGardenState |
Registered Nurse Karen Hlywiak addressed the Celiac Center's growth of its ten years in existence, and how the Celiac Disease community offers support. Some fun facts we picked up: The center follows 1,000 families worldwide, offering online services, in addition to local support at its facility. CHOP saw about 150 new cases of childhood Celiac Disease last year and is advocating for gluten-free meals in schools.
Nurse Practitioner Patricia Bierly spoke about the clinical side of diagnoses, She said a biopsy is key for diagnosing Celiac Disease through an endoscopy. An internal look can suggest a potential problem, but isn't enough evidence.
According to Bierly, siblings of children with Celiac Disease should be tested annually until puberty, then bi-annually, due to the close genetic relationship. Children can start being routinely tested at age 2 or 3, but younger if symptoms are presented. And its important to keep using the same laboratory (ie. Quest or LabCorp) to better able true comparisons, year to year. There's no standardization in the U.S. for celiac testing, Bierly said, and there are "marked variations" from lab to lab.
Later in the program, Dr. Verma discussed the similarities and differences between Celiac Disease, Wheat Allergies and Gluten Sensitivity. Bottom line: All should be taken seriously and cause many of the same, uncomfortable symptoms.
Dietician Kara Feigenbaum discussedthe "Evolving Gluten-free Food Market," which has expanded dramatically in the last 15 years. (Don't I know it?!) She said studies are showing that gluten-free diets typically are high in fat, while low in fiber, vitamins and minerals. The makers of alternative breads and other products are now fortifying their foods with additional nutrients.
Feigenbaum recommended grains such as teff, millet and gluten-free oats, which are naturally higher in fiber and nutrients than other types of gluten-free grains (ie. rice flour). Celiacs should aim for at least 5 servings of vegetables and fruit per day, and at least four servings of diary.
Dr. Verma also addressed the gluten-free diet as a fad as both a blessing and a curse. Although it comes with public scorn, like that dirty look you get when asking questions in a restaurant, it also has created a larger market for gluten-free products.
Dr. Verma strongly recommended against using "treatment" products, such as Gluten Ease, as a substitute for a gluten-free diet. She said although these products may lessen the obvious symptoms, they are not cures and do not safeguard against unseen consequences.
If you're thinking about cheating on your diet, don't, Dr. Verma said. And that sentiment was shared by blogger Priyanka Chugh (aka Anti-Wheat Girl), who gave a presentation about the Top Ten things she's learned since her diagnoses 10 years ago. "There are NO cheat days," she said.
The final presenter was Alice Bast, president and CEO of the National Foundation for Celiac Awareness, who spoke about continuing advocacy efforts and encouraged celiacs to speak up about their needs.
During the formal presentations, the children in attendance were treated to face painting, a gluten-free bingo game with prizes, a movie and other activities. Afterwards, several break-out sessions followed. Breakfast, snacks and lunch also were provided, along with a vendor fair.
Next: We break down the food available at Celiac Education Day.
No comments:
Post a Comment