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  • Courtney Buchanan
    Courtney Buchanan

    Celiacs Feel Excluded from Social Life


    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 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.

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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.

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    I was diagnosed with coeliac disease in 2000 and fortunately the United Kingdom has good food labeling information. I don't know how many "Wegman" stores there are in the US but they do sell gluten-free pasta and I can get gluten-free beer in the UK! I live in a family where I am a coeliac, my daughter has autism, which limits what she eats. My wife has no restrictions but the solution is to eat more rice or cook a separate gluten-free pasta for me. I miss proper bread and biscuits !

     

     

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    This is comforting to know, especially that Wegman's has made tremendous effort to make sure the products they label are indeed gluten-free. Shoprite, not so, in my opinion... in NJ. I've eaten products they listed as gluten-free and had reactions. It's been a horror story since. But dining out is something that our family do together ALL the time. Me, not so much because I HATE being "the one" with the problem... the inconvenience. Some people go as far as to say "I wont go out to dinner if you don't go". So... am I supposed to sacrifice my health and well being just so that person will feel better about going? Right now, my life sucks and I just want to run and hide. I wish that I can go to restaurant and feel like the servers are trained in food allergies and behaving in such a way, not to embarrass their customers at their establishment. The food industry in NJ needs to be well trained as well.

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    Your article makes it sound a lot worse than it really is. There is no need to feel socially excluded or "bite into a hard piece of bread". In this day or age you can get very acceptable gluten-free products including breads (or make your own!) that are highly palatable. More and more restaurants will accommodate your needs and if you want to get together with friends there are many non gluten meals you can make. I have had excellent home made gluten-free bread, brownies, cookies, pasta and other gluten-free foods. Not to mention what is wrong with chicken, fish or lean beef? Quinoa makes a great side as does basmati or other rice ,etc,etc. Even the beer isn't that bad.

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    This is comforting to know, especially that Wegman's has made tremendous effort to make sure the products they label are indeed gluten-free. Shoprite, not so, in my opinion... in NJ. I've eaten products they listed as gluten-free and had reactions. It's been a horror story since. But dining out is something that our family do together ALL the time. Me, not so much because I HATE being "the one" with the problem... the inconvenience. Some people go as far as to say "I wont go out to dinner if you don't go". So... am I supposed to sacrifice my health and well being just so that person will feel better about going? Right now, my life sucks and I just want to run and hide. I wish that I can go to restaurant and feel like the servers are trained in food allergies and behaving in such a way, not to embarrass their customers at their establishment. The food industry in NJ needs to be well trained as well.

    I have recently become diagnosed with celiac disease. I am struggling. I often feel that my life sucks too! I am trying to work through this, but it is difficult. It helps knowing that I am not alone in this struggle. Yes, there are gluten-free restaurants and gluten-free breads, but it is not the same. It is an ordeal ordering at restaurants and stressing the gluten-free need. It is not worth it most times. I am hoping that this will get easier, but for now I am taking it day by day. Many days, I get so frustrated that I just would rather not eat, and don't. Yes, I do feel better physically, but socially and emotionally not so much.

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    My daughter, now 12, was diagnosed three years ago. The diagnosis and change in diet ended years of stomach pain, but I have to agree that it is not easy. My daughter initially felt excluded from many activities, but we go out of our way to find gluten-free options and restaurants so she can try "regular" foods. For many, the added expense of gluten-free foods can be prohibitive ($7.00 for a loaf of sandwich bread), but we are fortunate in that regard. I worry about cafeterias. Her school is okay, but there is nothing that feels safe at my company cafeteria due to dangers of cross-contamination. The disease requires a degree of confidence and independence of diagnosed children, and I appreciate that the author addresses this aspect of the disease.

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    Having celiac disease now going on 14 + years, I can say in the beginning it is overwhelming. I would say the first 2 years were difficult. You must tell yourself your diagnosis is not what defines you. You must make up your mind that this is what you HAVE to do, period. I fully embraced from the beginning I was not going to cheat (you're cheating yourself and risk unknown harm). But the variety of foods was certainly less back then. One never realizes until you have something like this how food is such a social event. People think oh it is okay to have a small piece or why are you worried at an event where things are placed on the table... you all know someone taking a piece of bread and will it pass over the gluten-free dish you have brought along to share.

    You become a detailed label reader; you must, and I never take a chance. It is about taking charge of your health. Having celiac disease has expanded what our family does eat instead of what we don't eat. Things I probably would not have tried or offered to my family are now eaten daily. Quinoa, coconut flour; the list is too long to list. You also have the opportunity to teach the public about something that maybe someday they may find they have or a love one has. Eating out is a challenge and it unfortunately does mean if I am coming along this means some homework on finding out if I can eat there etc. My family is great about this. Yes we do eat out less but that is not a bad thing either as I do like to cook from scratch.

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    Your article makes it sound a lot worse than it really is. There is no need to feel socially excluded or "bite into a hard piece of bread". In this day or age you can get very acceptable gluten-free products including breads (or make your own!) that are highly palatable. More and more restaurants will accommodate your needs and if you want to get together with friends there are many non gluten meals you can make. I have had excellent home made gluten-free bread, brownies, cookies, pasta and other gluten-free foods. Not to mention what is wrong with chicken, fish or lean beef? Quinoa makes a great side as does basmati or other rice ,etc,etc. Even the beer isn't that bad.

    I sure would love your recipe for gluten-free bread and goodies. The bread is what I miss the most. Thanks for anything you can send that will help. I live in Ontario, Canada.

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    Go to college at Virginia Tech if you have Gluten Syndrome! My son, a Senior at VT, is extremely sensitive to any gluten (including cross contamination) and follows a very strict zero gluten diet. He has NEVER had one problem with either the various dining halls or shopping in the community. These young people need to recognize that they are not the problem, but rather the gluten containing foods they used to consume are unhealthy, genetically modified and toxic... therefore, the food is the problem! I hope that young people will come to realize that they are actually lucky to find out the source of their health issues during their youth. I suffered for 48 years and not one doctor was even interested in finding out WHY I had various health issues, but rather just wanted to medicate me and tell me I was crazy. Proactive prevention is the key to optimal health, safety and well being! Good luck!

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    This article makes me really sad. I was diagnosed with celiac disease as a toddler and grew up gluten-free my entire life.

     

    When I went away to college, my friends were supportive and understanding even if the dining hall wasn't always the same. We went out to dinner at local restaurants, cooked dinner together in our on-campus housing, went to bars, and even had a 13-person Thanksgiving dinner at our house senior year of college. Although my friends teased me lightly about being a "silly yak" it was never malicious or ostracizing. We all had our things that we were dealing with in the house including exams, guys, bills, etc. and celiac disease was my "thing".

     

    I hope this article doesn't discourage potential college students from socializing and trying to fit in. My four (gluten-free) years of college were some of the best of my life.

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    Your article makes it sound a lot worse than it really is. There is no need to feel socially excluded or "bite into a hard piece of bread". In this day or age you can get very acceptable gluten-free products including breads (or make your own!) that are highly palatable. More and more restaurants will accommodate your needs and if you want to get together with friends there are many non gluten meals you can make. I have had excellent home made gluten-free bread, brownies, cookies, pasta and other gluten-free foods. Not to mention what is wrong with chicken, fish or lean beef? Quinoa makes a great side as does basmati or other rice ,etc,etc. Even the beer isn't that bad.

    I feel like I am playing Russian roulette. The main problem is cross contamination in the restaurants. 90% of the times I will become sick. Maybe it is the area I live. I have taken my food with me but most of my friends, co-workers and restaurant workers are resistant to this concept.

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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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