<<Disclaimer: Verify this information before applying it to your situation.>> ...................................................................... : : : Excerpts from the Westchester CS Support Group : : ---------------------------------------------- : : newsletter: Feb. 1999 Leslie Elsner and Sue Goldstein, editors : : newsletter: Oct. 1998 9 Salem Place : : White Plains, NY 10605 : :....................................................................: When You're a Teen, by Jennifer Griffin -------------------------------------- Shortly after celebrating my Sweet Sixteen, I was diagnosed with celiac disease (CD). At first, I was so relieved that the doctors found out what was wrong with me. After months of feeling sick, the doctors finally knew what I was suffering from. To be honest with you, I was so happy that they were actually going to take me seriously, after months of telling me that nothing was wrong with me. I had no idea, though, of the long road to recovery that was ahead of me. When my doctor told me that I had CD, he didn't tell me of the feelings of isolation I would have following the diagnosis. I think these feelings were intensified because of my age. As a teenage celiac, I often feel out of the loop. The trips to McDonald's and the high school cafeteria often remind me that I am "different" than most teenagers, and leave my mouth watering. The strange looks I receive when a waiter puts a salad down on my plate, when the rest of my friends are eating hamburgers and fries, hurt my feelings. Now that I am beginning the college search, CD is becoming a larger part of my life, if you can even imagine that being possible. When I am looking into a school it is apparent that I am different than other high school juniors. Most teenagers ask about the social life when they visit college campuses. Not me. I ask if on-campus apartments are available. Although my diagnosis was only ten months ago, I have come to realize that a celiac has to be assertive. When you go to a restaurant, you have to make sure that the cook knows what gluten is. Being a teenager, it's often difficult to get people to take you seriously. I have often received nasty looks when I insist that the hamburger doesn't touch the hamburger bun. What the waitress or waiter doesn't understand is that I'm keeping myself from getting sick, not just being difficult. I think having a teenage support group would be extremely beneficial. We could talk to people our own age about the feelings we're having, certain circumstances we've been in, and could learn of helpful tips that would be useful in our lifestyle. Personally, I would love to hear some advice from people my own age about how to make the feelings of isolation less severe. My e-mail address is <[log in to unmask]>. -=-=- -=-=- Study: Body Mass in Celiacs<3> ------------------------------- Dr. Dickey and Shelagh Bodkin noticed that few of their new patients with CD were obviously malnourished. They conducted a prospective study of body mass index to investigate further. The study suggests that a minority of patients with villous atrophy fit the obviously-malnourished stereotype and that the possibility of CD should not be discounted in overweight patients. Many patients with gluten sensitivity have less severe small bowel damage<4> and may be even less likely to be underweight. -=-=- -=-=- Doing Disney World Gluten-Free, by Donna Griffin ------------------------------------------------ When we first made vacation plans to go to Disney World, our biggest dilemma was whether to drive to Orlando and save ourselves some money, or to fly and splurge a little. However, several months later our just "sweet sixteen" year old daughter, Jennifer, was diagnosed with celiac disease. Suddenly, the dilemma became whether to go at all! As parents of a newly-diagnosed celiac, we had our own issues to deal with, and after many months of Jennifer being ill, we were all emotionally drained. As her mom, I was determined to show Jenn (and frankly myself as well) that her life would be "normal" even without gluten. So began Jennifer's first sojourn as a celiac. Our first step was to call the Celiacs of Orlando support group. They were very helpful and suggested that I contact the executive chefs at each of the theme parks. I was still nave enough to think that someone at the central reservations number at Disney would surely have these phone numbers available. After several phone calls, I finally became aware of a special requests reservationist by the name of "Linda" at 407-939-7807, who magically (no pun intended) began to make things happen. She arranged for a refrigerator to be in the room at no extra charge; provided a brand new, still-in-the-box-unopened, toaster; and assisted me in making special gluten-free/lactose-free (GF/LF) meal reservations sixty days in advance, at full-service Disney restaurants. Perhaps most importantly, Linda provided me with the names and numbers of the (mysterious) executive chefs. She also e-mailed the concierge at the Disney resort where we were staying and advised them that they needed to get some GF/LF items in stock. This was not in place when we arrived, so I made an unhappy Mouseketeer phone call, and shortly thereafter, someone from Guest Relations at the resort itself went to "Chamberlain's" and brought GF waffles, cookies, and Lactaid milk directly to our room. So now everything seemed to be in place. Well, you know what they say about the best laid plans... As luck would have it, there was a lightning strike in central Florida the day we arrived, resulting in no natural gas for two days. This became an excuse at several locations, and a really good way to get me fired up, with or without the gas! I made an early morning call to "Brenda", the executive chef at the Magic Kingdom at 407-824-5967, who seemed genuinely upset at Jennifer's circumstance. Thankfully, the gas crisis was also over at this point. She e-mailed all of the remaining restaurants, even if they were in Epcot or MGM, putting them on a sort of "alert". Ultimately, this led to chefs personally contacting either Jennifer or myself and pre-ordering her meal. Even after this, there were still some rough spots, but good help was available. Marianne Hunnell (407-560-1238, pager 407-934-1180), the executive chef at MGM, was very helpful after Brenda's contact with her. She had done some work with the celiac support group in Orlando, and knew enough to try to coordinate Jennifer's meals at MGM so that there was some variety. Chef "Wendy" at the Prime Time Caf was especially thoughtful in her service. Although there is an executive chef at Epcot (407-560-7517), the communication was weak and we had a less than pleasant experience arranging for a much-awaited GF/LF Mexican meal. Ironically, the restaurant that was the most accommodating had the least amount of notice, and was the only place Jennifer chose to go to more than once: Spoodles on the Disney Boardwalk. They have a chef by the name of "Damian" who really went out of his way to make a special dinner and GF/LF fruit cobbler for dessert. Magic Kingdom restaurants also deserve some accolades: Cinderella's Royal Table served Jennifer a GF/LF breakfast fit for a queen, and someone at Tony's Town Square high-tailed it over to Adventureland to get a Dole Whip for dessert (there are two types; the one with no ice cream is GF/LF....yes, I called Dole beforehand at 800-232-8888). Before I leave the Magic Kingdom, some GF trivia: The french fries at Casey's at the end of Main Street are GF, as is the Magic Kingdom popcorn; and there is GF ice cream at the Cone Shop on Main Street. (Several of the full service restaurants had either Rice Dream or Tofutti on hand for us. [Editor's note: It is our understanding that Rice Dream is NOT GF, due to processing that is done with barley enzymes, even though the ingredient label reads okay.]) My best advice would be always to speak directly to the chef, have some emergency rations on hand just in case, and consider a condo or room with a kitchenette!