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Celiacs Feel Excluded from Social Life

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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27 Responses:

 
Keli
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said this on
22 Jan 2013 10:47:16 AM PST
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.

 
gmlmadrid
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said this on
11 Feb 2013 7:01:23 AM PST
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!

 
Lisa
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said this on
22 Jan 2013 10:50:08 AM PST
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.

 
SK Smith
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said this on
07 Feb 2013 11:44:46 AM PST
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.

 
James Hill
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said this on
22 Jan 2013 2:13:56 PM PST
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 !


 
Barb
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said this on
30 Jan 2013 3:55:23 PM PST
I am in the US and Wegmans is not all over the US. I happen to live in the area where they are but still not close to me. I drive there to buy gluten-free stuff.

The labeling here sucks. I am recovering from getting gluten, but in this case I forgot to read the full label as I am still getting the hang of his and my thinking is affected by gluten.
I can't eat rice nor any grains as they are finding out all grains have a type of gluten in them. They all make me sick for sure.

Paleo diet is best for beans also make me sick so I agree any base seed is a problem to eat.

I sneeze I get sick from food. I don't eat out but if I do I eat at Olive Garden.

 
Tannie
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said this on
22 Jan 2013 3:06:33 PM PST
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.

 
Cyndi
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said this on
24 Jan 2013 5:39:41 AM PST
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.

 
Robert
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said this on
23 Jan 2013 2:14:26 PM PST
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.

 
laura
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said this on
25 Jan 2013 2:56:30 PM PST
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.

 
marg
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said this on
25 Jan 2013 5:52:43 AM PST
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.

 
Jeanne
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said this on
28 Jan 2013 12:34:20 PM PST
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.

 
Morna Erwin
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said this on
28 Jan 2013 4:44:23 PM PST
The trouble with relying on naturally gluten-free foods in a restaurant is cross-contamination. I have had eggs, hamburger patties, unmarinated chicken, and salads that were cross-contaminated (probably from a contaminated utensil, glove, or cooking surface). I have one Mexican restaurant that cleans the tortilla griddle before they cook my corn tortillas, but it can be a crapshoot, especially when travelling. I actually had a waitperson tell me that they could not guarantee that clean kitchen utensils would be used for my food. So many people eat gluten-free as a choice these days that often celiac disease is not taken seriously enough. I still eat out, but will often just visit with others if I can't trust the kitchen.

 
Sue
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said this on
28 Jan 2013 5:04:04 AM PST
I have to disagree totally with your response. Not everyone lives in a gluten-free friendly area. Not everyone diagnosed with celiac disease can eat everything else; there are a lot of us with many other allergies/intolerances. Wegman's was mentioned in this article; the Wegman's in my area is small and I have to drive for 45 minutes to get some of my necessary food to make my own bread. My work space is constantly being contaminated by people walking around eating pizza, muffins, donuts, etc. Has it occurred to you that you might be getting contaminated, but are one of the unlucky ones who don't have any symptoms to let them know the damage is being done?

 
slick
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said this on
28 Jan 2013 12:46:03 PM PST
You are wrong. My daughter has had celiac disease for 2 years now and is going through a lot of emotional stress because she is different. Kids' parties, etc. are not an option for her. She cries all the time. Regarding bread, I barely have time to cook regular meals, let alone bake my own breads. The bread they have available IS hard and disgusting.

 
Adrian
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said this on
25 Jan 2013 5:42:39 AM PST
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.

 
Jamie
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said this on
25 Jan 2013 5:42:54 AM PST
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.

 
Denise
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said this on
25 Jan 2013 6:15:31 AM PST
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!

 
Erin Smith
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said this on
25 Jan 2013 6:35:36 AM PST
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.

 
cranscape
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said this on
28 Jan 2013 12:36:47 PM PST
Since you were gluten-free from such a young age on, you probably, happily, don't know any different. Everyone who ever knew you already knows what your "thing" is. You're like a native speaker.

I was diagnosed in my late twenties after years of pain and sickness from the age four on that was misdiagnosed and it hasn't been easy socially or otherwise. Even people who saw me when I was at my sickest don't seem to get it. Running into people who used to know me is bad too. They see I'm super skinny now and think I should stop my diet fad and eat some "real food."

They get annoyed at going to the same short list of restaurants I've had good luck at. Even if I look through a menu and try to show them there isn't anything I can eat they act like it's because I'm not willing to take a risk and am too busy or that I actually enjoy shooting down their options.

They are mad I can't eat all the gluten-free boxed cookies from the store they buy me to be "nice" because those mess up my digestion between the sugar and dairy and lack of nutrients. I've told them numerous times why I can't eat them and they act like I'm just being difficult. They find a gluten-free pizza option and get mad that I don't order it despite my saying I've gotten sick EVERY TIME I try gluten-free pizza at a restaurant because of cross contamination. Not just one day sick. I'm sick for a month, my hair falls out, I get a rash, I can't eat dairy for months... it's horrible.

When you are diagnosed as a child you miss out on a lot of secondary stuff that crops up when you are older and have had damage and inflammation for 20+ years. I'm glad your experience has been easy, but it isn't the norm at all. A diagnosis while in college is a lot for some to handle who already are dealing with classes, a job, social life, etc.

 
Donnie
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said this on
28 Jan 2013 6:02:05 AM PST
I have celiac disease, and I'm allergic to corn and sulfites, so I have to avoid them along with gluten. I can't eat out, and I'm never invited anywhere because I can't eat food away from home. Since all social get-togethers involve food, it's a lonely life for many of us with several food restrictions.

 
Alex
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said this on
28 Jan 2013 6:24:06 AM PST
It's funny how this article makes me think about how I fought this issue. First, you've got to get people around you to understand that you don't want to be excluded from their social life because of celiac disease. Afterwards, you've got to make it easy for your pals to invite you. Usually, with my sister, when there's a family gathering, I ask her what she's planning on serving and I bring my own version of the meal. I do the same with my friends, and I try to invite them more often than they do. In those cases, everyone eats gluten-free food.

Moreover, if you want to eat good gluten-free food, you've got to learn to cook. After a few months, it's becoming a pleasure and not a chore anymore. Not only will you eat better food all the time, but people will enjoy coming to your place to eat.

Eating is a pleasure. You've just got to find a way to make it more enjoyable than what it already is.

 
MikeB
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said this on
28 Jan 2013 11:39:43 AM PST
I am gluten free. I have serious health problems if I eat gluten. I have cooked 95% of my meals the past 8 years.
If you have a gluten problem then you need to see the strengths the problem can create for you.
When living with other people, be consistent with your meal preparation times, amount of fridge space you use, doing your own dishes.
Once you figure out how to eat alone, then you can figure out how to eat with other people. You must figure out how to eat meals alone first, because then if other peoples actions conflict with your routine, you can tell them you have been practicing this routine for this amount of time because you have dietary limitations. You can explain to them that when they conflict with your routine, they are creating unhealthy habits for you and for themselves.
If you are having trouble fitting in I think it means you are having trouble eating alone. Become independent until you find people that you can train to cook to your gluten free standards.
Do not eat food that will make you sick. Do not trust restaurants unless they have been deemed gluten free by an independent agency. Do not trust other people who say they have prepared gluten free food for you unless you watched them prepare the food.
Elevated levels of consumption of gluten most likely occurred to enable large weaker groups of people to sustain themselves through the winter.

 
Mary
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said this on
28 Jan 2013 12:07:31 PM PST
I was diagnosed four years ago, and two years ago I convinced my daughter (who tested negative for celiac) to try gluten-free since she was having so many stomach issues. The extra challenge is that she is vegetarian. It has been a journey! We love Udi's breads and Schar has some nice products as well. She continues to go out with friends and while she gets tired of salads, does it for the social time. Wish the girl in the article had found some new recipes to try with her roommates. They could have found some new favorites...

 
GlutenFreeG
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said this on
28 Jan 2013 6:07:59 PM PST
I'm glad to see celiacs stop eating out and publicly scrutinizing cross contamination that exists everywhere. Celiacs should NOT eat out unless it's a proven and trusted gluten-free restaurant, and therefore if a celiac can't eat there it should not be permitted to cater to gluten-free. I pray one day that we can get this real, but for now the gluten-free movement is jaded and failing.

 
Sage
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said this on
28 Jan 2013 7:37:45 PM PST
This article is quite sad, but I agree with a lot of the points mentioned. It is very hard for me to stick with a strictly gluten-free diet. It isn't until I try to convince myself that I can eat "normal food" and then end up slipping up on my gluten-free lifestyle that I realize I don't want to live so reckless anymore. It's an uphill battle because I don't have any type of support system to encourage me to take of myself other than myself. My family, boyfriend, and friends all act as if being gluten-free is some diet fad. It's disheartening and I get emotionally drained to the point of just giving in to gluten quite frequently, then I spend the next two days sick and mentally exhausted. It's very tough, but I'm slowly learning that I'm the only one who can keep myself healthy and I need to try to find peace within myself to stick to the betterment of my health. Thank you for this article. It's a real wake up call to realize that I'm not the only one struggling and that there is hope and support within the celiac community.

 
Cinder Kinder
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said this on
07 Feb 2013 7:59:30 PM PST
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 CD 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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