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  • Courtney Buchanan
    Courtney Buchanan

    Celiacs Feel Excluded from Social Life

    Reviewed and edited by a celiac disease expert.

    Caption: Photo: CC--b_lumenkraft

    Celiac.com 01/21/2013 - At the end of a long day of class and meetings, Morgan Hembarsky loved to come home to her four roommates eagerly awaiting her to cook their weekly meal together. Immediately when she walked through the door the most important thing to talk about was food, conversation could wait. Was it pasta with marinara and veggies or chicken Parmesan with warm rolls night? "We try to have dinner together at least once a week to catch up," said Hembarsky, a senior at Lehigh University.

    The women sat down to a warm meal together and gossiped about their Lehigh University professors' bad jokes and the new romantic comedy in nearby Lehigh Valley theaters. Photo: CC--b_lumenkraftCooking and chatting: a girl's perfect way to unwind at the end of the day. But days of cooking with her roommates are gone. Early in the fall of 2011 after months of stomach pain, Hembarsky visited a doctor and received the answer to her suffering.

    The culprit, celiac disease, which is a condition in which one's body cannot digest gluten and eating it damages the small intestine. Because many of the foods Hembarsky and her friends often used to make contained gluten, like pasta and bread, that meant no more pasta nights with her friends. In October 2011 she gave up foods with gluten, the killer protein found in many grains and flours. Being diagnosed with celiac forced a change to the social calendar. "It's something you learn to live with and you learn what healthy decision you need to make," said Hembarsky. Hembarsky is not alone. For many celiacs in Bethlehem, social opportunities are hindered by dietary restrictions such as not being able to eat a hamburger bun or drink beer at a tailgate because they have gluten. Instead of going out with friends, they cook individualized meals at home. Now with more people being diagnosed as gluten-intolerant or celiac – in fact one out of 133 people in the United States is affected by celiac disease, according to the celiac disease Foundation – the choices of where to buy groceries and whether one should go to a restaurant taking the chance of feeling like a burden are at the forefront of people's minds.

    Take Tabitha Echavarria, a senior at Lehigh University, who was diagnosed with celiac last July 1. "The biggest change in my life has been taking charge of my diet," said Echavarria. "I know 100 percent of the ingredients of everything I eat because I most likely made it from scratch. I never eat anything without asking what is in it. " Echavarria said senior year of high school she experienced persistent migraines, numb feet, chest pain and stomach aches – symptoms that other celiacs often suffer as well. After constantly changing her diet hoping to find the trigger to the pain and receiving negative blood tests, she visited every doctor she could find. "The previous year I had cut out bread from my diet ‘cause I knew something was wrong," said Echavarria. "Then eventually I just really couldn't eat ever and went to like every different doctor available to figure it out. " Now on a Friday night when her rugby teammates go out to hibachi or Sal's starving for a delicious meal, Echavarria makes herself dinner beforehand so she can still tag along to the restaurant. Going to meals with friends is no longer about the eating, it's about the company. While Echavarria still goes out to restaurants for the social aspect, other celiacs avoid eating out as much as possible.

    Three weeks ago, Andrew Bench was sitting at his desk at King, Spry, Herman, Freund & Faul Law Firm in Bethlehem, Pa. , with a stomach ache when he decided to stop eating out as much as possible because of the potential cross contamination. He said many restaurants in the Lehigh Valley have cross contamination even though the waiters told him that the kitchens were being careful. Flash back to when he was diagnosed as celiac a year ago. He described the feeling as a concussion mixed with sinus pressure. Cross contamination could result in the same thing, or worse. Bench recommends Tapas on Main on North Side as a safe gluten-free option. Echavarria likes Red Robin for their protein-style burgers and La Lupita for the corn-based options while Hembarsky prefers salads at Bravo and sushi at Asian Bistro.

    While restaurants are introducing gluten-free menus, Bench said that one slip-up in the kitchen can mean hours of stomach pain. Echavarria recalled getting sick after ordering eggs, a naturally gluten-free dish, at a restaurant. Later she found out that the eggs had pancake batter in them. Restaurants may not think about the danger to celiacs by adding gluten to a naturally gluten-free food. "I think what I am most looking forward to in the future is restaurant activism," said Echavarria. "I would just like to have the option of eating with my friends knowing I'm not going to get sick or that I'm not annoying the people that work there. "The Lehigh Valley is embracing the gluten-free movement, slowly but surely.

    Wegmans, Giant Food and ShopRite have gluten-free aisles that provide a wide range of options. As he was giving granola samples at Wegmans, Calvin Virgillo, operations and sales at The Granola Factory, recognized a need for gluten-free, nut-free granola, which will be available in 2013. "It doesn't matter how good our granolas if there are people who won't buy it because they're gluten free or have a nut allergy," said Virgillo. With increasing options of places to purchase groceries and dine out, the community is recognizing the gap for this niche market of gluten-free consumers. A day will come when gluten-free diners won't have to worry about missing out on social life because of their diets. Until then, Hembarsky must deal with biting into a dry, hard piece of bread and baking her own treats when she wants to socialize with her roommates. "I think bread is the hardest to be gluten-free because it [the gluten-free version] doesn't taste like bread, but a majority of them aren't that great and they come frozen," said Hembarsky. "But everything else, I feel like you don't have to sacrifice at all. "


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    I agree with most of the article except, perhaps she needs to try some different gluten-free breads. They don't have to be hard and dry - Udi's or Kinnikinnick soft for instance.

    As a Vegan who doesn't eat dairy or meat and can't have saturated fat due to multiple schlerosis or xantham gum due to gluten intolerance or soy due to the estrogens, I have found absolutely NO breads that are safe. They always have soy or fat or some type of gum or some vinegar or eggs or something else. Even legumes are hands-off (which means I might have to start eating fish). I have looked in all the surrounding stores within in hour and on Amazon. Nothing.

    I was just diagnosed a month ago and the difficulty in finding go-to foods is a difficult and steep learning curve. And, certainly, the social aspect stinks. My children will probably be diagnosed soon, and I KNOW that will be a nightmare. My son LIVES for the snacks in orchestra - usually pizza. Fortunately, 2 other kids in his group are already gluten-free - but they usually are left with nothing to eat because the snack people don't think about it. At least I can take food for all 3 of them. My daughter's friends think the food she takes for lunch is already weird, much harder when or if she decides to actually go gluten-free (as she needs to) and can't eat food at the dances or during play practice.

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    Robert, sorry, but you obviously don't have all the sensitivities as other people reading this article. And you must live in a very gluten-friendly place. I live in NW Arkansas. The only bread I have access to that is gluten-free in the stores IS frozen and hard and DOES contain xanthum gum - which is terrible for my stomach and MANY other gluten-intolerant or celiac disease people. I hurt horribly for 3 days, and then another week as it goes through my system. So, I DO have to make my own. And, because I can only have 5 grams of saturated fat/day due to Multiple Schlerosis (probably caused by the gluten-intolerance depriving me of Vitamin D3), and an allergy to corn, and can't have soy due to it messing with my hormones (it has estrogen and no women should be eating it - especially if they have breast cancer in their family), no other breads fit the bill either. Yeast is also out due to migraines (probably from the gluten-intolerance). Plus, legumes are a no no. So, even though I have many vegan friends, I really can't eat any of their food. I know of NO restaurant around here that has a dedicated gluten-free space. Even the health food stores look at you like you are crazy if you buy anything except the packaged stuff because they don't dare guarantee anything else to be gluten-free due to cross contamination and have no answer for you when you say it can't have this or this or this or this. I don't like having a fist in my stomach for three days, AND I don't like feeling that I can't eat with my family out at a restaurant. But I have just learned to be HAPPY that I now know HOW to feel better and focus on water and fun when I am out with others. I can eat later! Still, after 48 years of living like a "normal" person, it is a HUGE learning curve. But, I want to LIVE and live healthy, so I am completely on board and eating healthier in the last month than I have in my whole life. Thank goodness for the internet to find recipes that I can modify to remove anything I can't have - since NO recipe watches for all the things on my NO list. Still, I have hope that my future will involve more people coming to MY house and enjoying my food. Would have been much easier to live it as a kid so I didn't develop all these junk food loves, but I am content to look for new loves because I can tell after only 4 weeks how much better I feel.

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    I have to completely agree with this article. My daughter was diagnosed at age 11. Her middle school years suddenly became very tough for her. By the start of her freshman year, she was begging to be home schooled. She now has a social anxiety and doesn't care to leave the house. She accepts that she is different, but she fears others perceiving her as being different. Attending parties is no longer the same. She can't have the pizza, cookies, cakes or cupcakes. Eating out has completely changed for our family because we can only frequent restaurants that can accommodate her dietary needs.

    My daughter was diagnosed at 11. Her school provided gluten-free meals, even on outings and made things easy for her and for us. Without minimizing the fact that she is on a restricted diet, and often takes her own food to parties and other occasions, she has always felt fully integrated. I feel very grateful to her school which provided this service without any obligation to do so and also to the Celiac Association of Madrid for their long and in the end successful battle to make it compulsory for all public schools to provide a gluten free lunch option. It is so important to get organized and communicate with the schools and take action to fight for our rights. Never give up!

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    I use a combination of Better Batter flour and the recipes on their site, Jules Shepherd flour and her cookbook and blog (a lot of the recipes overlap), BiaGlut pasta by Heinz - you can not tell this is gluten-free (so yummy), The Cake Doctor Bakes Gluten Free (she has two books I only have the first it is fabulous and a life saver, but I want the second). All of these you should be able to get online if you can't find locally. Gluten free on a shoestring and Elizabeth Hasselbeck cookbooks both have some good recipes in them as well, but I don't love the entire book. Hope this helps. Cake was my hard thing to give up. I don't eat it often, but I love it.

    The gluten free cupcake cookbook by Elena Amsterdam is a great source of gluten free cake recipes and her blog has more. Also, the magazine Gluten Free and More has great recipes every month and a column by Beth Hillson to help readers adapt recipes to specific food sensitivities.

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  • About Me

    I am a student at Lehigh University in Bethlehem, Pennsylvania. I have a gluten-free diet and am interested in learning more about the Celiac lifestyle. I've written an article about the difficulties of being Celiac in regards to social life, with a focus on the Lehigh Valley.

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