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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes


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About sarah513

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    Foodie, knitter, revolutionary socialist, newly diagnosed celiac.
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    New York City
  1. Happy birthday and may God bless you today!

  2. Sambuca -- Restaurant In Nyc

    I wasn't impressed with Sambuca either. The pasta was blah, and the gluten-free bread was so hard that it was actually inedible. I couldn't even get my knife into it. I would have asked my server about it-- but he NEVER CAME BACK. Very disappointing. My friend was taking me out for a special celebration dinner, and the meal was so bad for the price, even for the non-gluten-free people there, that I was embarrassed to have recommended it.
  3. I just want to rave about the experience I had at Garden Café in Brooklyn. This is a tiny, quiet, romantic little place—maybe 8 tables—run by a couple. The only person who waited on us was the owner. They do a small menu that changes every day, with healthy, organic, local food, and they are very celiac-friendly. I lived as a celiac for several months before finding out that I just have a wheat allergy as well as several other food allergies. When I made the reservation, I told them about my diet and was assured that their food is not “wheat-centric” and they’d be happy to accommodate me. When my boyfriend and I got there (for our 8th anniversary!), the owner remembered my call and immediately pointed out the dishes I could eat (most of them). She came out of the kitchen a couple of times to get my assurance that specific ingredients were OK, and at one point she even came over to let me know that what my boyfriend was eating was also wheat-free, if I’d like to try it. The food was well thought out and incredibly delicious—since it was 20 degrees out it was mostly hearty winter food. I can’t recommend this place enough. It would cost a fortune if it was in Manhattan. It’s not cheap (at least by my low-budget standards) but the $30 prix fixe is a fantastic deal. Sarah
  4. Flor's Kitchen, Nyc

    Thank you SO much for this post. I read this, tried it, and loved it. I must have eaten there five times in the last two months. Not only that, I went there in a group, and all seven of us loved the place, which has never happened before. The ceviche is amazing, and the arepa barlovento... mmm. Thank you thank you thank you!!
  5. Restaurants In New York

    Some places I’ve eaten well lately: Café Asean, on 10th St. between 6th Ave and Greenwich. Southeast Asian food, very reasonably price, great back garden. Burrito Loco on West 4th just off 6th Ave. has tasty fresh Mexican and will make your guacamole right in front of you. They were also very accommodating about my food allergies and the server could rattle off lists of ingredients by memory. Bereket on Houston St. does excellent Turkish kebabs and rice, and is 24 hours. Chipotle, as chains go, is fantastic—lots of gluten-free food, and when I wrote them they wrote me back and gave me real answers to my questions!
  6. Dating

    Yes, thank you!! I was on a first date with a friend the other day-- pre-diagnosis I was really into Belgian beer, and we went to a bar that specialized in good beer and wine. She kept telling me to just try a taste of this delicious beer! It was killing me. Later we went out with my best friend and he laid down the law: "We do not say nice things about beer in front of Sarah! It hurts her! Beer is TERRIBLE." Aww.
  7. The Politics Of Gluten

    Westiepaws, I completely agree! (Except I'd add that politics = money!)
  8. Obviously, most of the posts on this board have to do with the nuts and bolts of celiac disease rather than any broad political questions. I realize that this post is unusual, and perhaps unwelcome for some of you, but I hope that you will consider what I am saying in a spirit of solidarity. I want to argue that living with celiac disease is, in fact, political; that we need to look at the larger picture in order to understand what is affecting our lives; and that we need to organize and take an active role in improving our lives. We know that about one in 133 Americans (more or less) have celiac disease. We know that the majority of them are undiagnosed and live in pain and discomfort without knowing why, often eventually succumbing to related conditions. We also know that 44 million Americans don’t have health insurance—not to mention people who may not be counted in the census and who are almost always shut out of the health care system, such as homeless people and illegal immigrants (all of whom are human beings who feel pain). Of the people who do have health insurance, the majority are working-class people who have basic plans and often have trouble affording copays, deductibles, prescriptions and specialists—when they are covered. We also know that the health care system in this country, such as it is, is a profit-based industry. It exists to make a few people very rich, not to deliver the best medical care to the most people. As a result, insurance companies stand in the way of getting needed medical care to patients, despite the best efforts of dedicated (and overworked, and often criminally underpaid) doctors, nurses and health care workers. They see health care as a cost to be minimized, not as a basic human right. The result, for us, is that suffering celiacs go undiagnosed, and even diagnosed celiacs have trouble getting access to the care we need. (For instance, my insurance company won’t allow me to see a nutritionist because I’m not diabetic—and the person making that decision has no medical training.) When we can see doctors, they are often uneducated about celiac disease and give us erroneous or conflicting information, don’t know how to give us the care we need, and are too overworked to research it and find out. Don’t we have the right to doctors who know how to treat our condition? Can only rich (or perhaps also geographically lucky) celiacs get specialized care? We also find ourselves at the mercy of food manufacturers. The Food Labeling Act, in effect in 2006, does require foods containing wheat to be clearly labeled, but wheat does not equal gluten and we still have to contact food companies, which often give us dodgy and vague nonanswers written by lawyers. If we live in major cities or have internet access and a credit card, we can buy specialized gluten-free products, but not without tripling our grocery bills. That’s not helpful for those of us who struggle to make it from paycheck to paycheck, not to mention those who are sick enough to rely on disability payments. We can make delicious and nutritious food at home, but we need to learn how to cook and how to take gluten-free safety measures, and let’s face it, if you have two jobs and kids, you can’t cook everything you eat no matter how resourceful you are. Furthermore, if you find yourself sick from a gluten accident or a related condition, you can expect to run out of sick days, take unpaid illness leaves (losing your income), and even find your job in jeopardy from bosses who dislike your “attendance problem” or your too-frequent bathroom breaks. For all of these reasons and more, we celiacs need to organize. I don’t just mean sites like this one. I can’t imagine what people did before the Internet—sites like this are no doubt a godsend—but a membership organization that could provide “real-world” resources could save lives, influence manufacturers and labeling laws, educate medical professionals, and bring awareness to this problem. We need to form some sort of collective to provide access to referrals, nutritionists, gluten-free foods, etc. for people who are geographically or financially prevented from obtaining these resources—something active and organized, like a National Union of Celiacs. The disability rights movement has done this with results that have broadened and even saved many lives. LGBT people are coming together to fight for marriage rights and health care. Why not celiacs? There are individuals and groups doing great work out there, but their audiences are limited. Most of the restaurants on the gluten-free Restaurant Awareness Program are expensive; celiac conventions cost hundreds of dollars to attend. We need to reach people who don’t yet have the resources they need, people who are struggling, people who haven’t been diagnosed and maybe don’t even have health care. but we need an organized effort—we need a movement. We need to do things like: -Recruiting celiac-friendly doctors, nutritionists and other specialists into a program that reduces fees for low-income celiacs or perhaps a credit union-style system to ensure that everyone has access to diagnosis and care. -Demanding that celiac prisoners, mental patients, and others who cannot control their own diets not be poisoned by gluten. -Fighting back against medical institutions that tell us we are crazy or insurance companies that refuse us medical care, through organized complaint, media campaigns, protest and lawsuits. -Organizing celiac disease screenings on campuses and workplaces—and offering newly diagnosed celiacs the support and resources they need to get healthy again. -Organizing multilingual celiac disease screenings and education in immigrant communities. -Organizing cooking classes and “gluten-free 101” classes around the country, in multiple languages, for sliding-scale donations. -Forming gluten-free food co-ops and community kitchens to help us all share the burden of gluten-free shopping and cooking—and demanding food subsidies for people on medical diets. (Agribusiness corporations get billions—that’s right, billions—of dollars in handouts and tax rollbacks from the government every year. Why shouldn’t some of that money go toward helping sick people afford food? See http://www.corporations.org/welfare/ for more information on this.) -Protesting a food industry that places shelf life and ease of manufacturing far above nutrition, health, safety and workers’ rights. -And why on earth haven’t we joined with physicians’ organizations, healthcare workers’ unions and other patients to march on Washington to demand affordable and sane health care? There are plenty of us. Nobody is going to accommodate our disease or fight for our rights unless we do it ourselves.
  9. Looking For Doc In Nyc

    I just went to Dr. Marcus Blechman on 15th St. and was pretty happy. He was the first doctor I’ve been to since my celiac disease began who actually knew what he was talking about! I’ve been through this routine where I tell the doctor I have celiac disease, they say, “Really? Wow! Wait here!” and then they disappear for a while, Google it, and bring me a two-page printout on the gluten-free diet. Ugh. So to have someone tell me things I didn’t know, order vitamin deficiency and bone density tests, and ask questions no one else thought to ask… pretty huge. He referred me to the celiac disease Center at Columbia for a nutritionist, but my insurance won’t cover it so I’m trying to figure out how much that will cost. I’ve only been once, and that was yesterday, but I have to say I’m impressed so far. Oh, and the receptionist was super nice and turned out to live a block away from me in Queens!
  10. Hello all, So I just got a bread machine (a gift from my extremely thoughful therapist!) and I want to get started. I have recipes from Betty Hagman's "Gluten Free Gourmet" cookbook and the web, and everything calls for yeast. Yeast is safe? Those happy little bacteria don't have anything glutenous in there with them? I just associate yeast with bread enough that the thought worries me. Are there particular brands I should look for/avoid? Thanks all!
  11. Hello all! I'm planning to get married in Pittsburgh next year. I'm newly gluten free (three weeks now!) and still adjusting. We're having a very informal, picnic wedding. I will probably be teaming up with friends and relatives (and my husband-to-be, an extremely talented cook who is taking up the gluten-free challenge admirably) to do most of the cooking, but I'd really love to have a pretty, gluten-free and (oh yeah) delicious wedding cake that everyone can enjoy. I'm a celiac and so is a friend of the family, but all of the other guests are civilians, so to speak. This is in the Pittsburgh area. I should add that we're on a super-tight budget-- I expect the cake to be one of the larger expenses, but we can't go crazy. Anyone from the 'Burgh or nearby have suggestions? Also, any other celiac bride-related advice would be most welcome! I'm sure lots of you have been through this, but it isn't exactly covered in the "so you're getting married" literature. Thank you!!
  12. Hi Michneva, My advice is to find a good wine shop near you. Most cities have at least a shop or two run by people who really love wine. Wine has a bit of a snobby reputation, but I’ve found that wine lovers tend to be really friendly and want to educate their customers—or at least the ones worth knowing do. Find a place that specializes in wine, grab someone who works there, and tell them what you’re there for. You can go ahead and tell them that you’re new to wine, but you’re interested, and give them an idea of your tastes—you like sweet things, nothing too heavy, etc. You might also want to give them an idea of how much you’re willing to spend. There are some fantastic wines in the $10-20 range, so don’t assume that expensive=best. If you’ve had a wine you liked or one you didn’t, tell them that too. They know what they’re doing, and they should be able to steer you toward a few different varieties and specific wines that they think you’ll like. Some shops even have regular tastings, if you want to try before you buy. Red wines can be heavy, but they can also be fruity and delicious. Whites are often lighter and more dry. But I’m making really broad generalizations and I’m sure there are lots of wines out there that could prove me wrong. I personally really like Clos du Bois Pinot Grigio, which is white, and fruity but not too sweet, and Cakebread Chardonnay, which is expensive but really good. I also like Beaujolais for red wines. Louis Jadot also makes wonderful wines. (I pretty much buy whatever my stepmother recommends, and it usually works out well.) Then go buy a couple of different kinds of cheese and go crazy! Some things go better with others, but my advice is to experiment and see what you enjoy—there’s no wrong way to go about it. Just go in, be friendly, and ask someone, and hopefully you won’t have to try too many places before you find someone nice who knows what they’re doing. And if they give you an attitude, leave immediately! You don’t need that! Have fun!
  13. Hello! I don't know anything about Outback and I'm not a fan of wine coolers, but you should know that Risotteria, wonderful though it is, does not serve Ramapo Valley, or at least they didn’t on Saturday when I was there. They do have Bard’s Tale. If you’re not a beer drinker and you like sweet drinks, you might find it bitter. I’d stick with a good red wine. You have to watch with wine coolers and flavored wines—many of them have additives that are not gluten-free. I’d advise finding a few red or white wines you enjoy (Rieslings tend to be sweet) and sticking with those. Cheers!
  14. I’m recently diagnosed and have been a huge beer snob for many years. I love Belgian ales, English nut browns, stouts, etc., and I can’t stand pale lagers like Budweiser. So I’m picky and wasn’t too thrilled about the prospect of being limited to only two kinds of beer! I did try Bard’s Tale and it’s palatable. It’s like a light IPA. I’m not in love with it, but it sure does beat no beer at all. Their web site says that they’re coming out with an ale and I think an IPA, and I’m really excited about that. Haven’t tried Ramapo Valley yet but I’m searching the city for it.
  15. I’ve got a twofold problem, and any advice would be greatly appreciated. First: I was just diagnosed by an IgA test at my doctor’s office. (I’m going in for a biopsy next week.) I’ve been going to this doctor’s office, a regular family practice, for a few months and I’ve seen a different doctor every time—I think they have a lot of new doctors on rotation, etc. Every time I go, I explain that I’ve recently been diagnosed with celiac disease, and the doctor and med student or whoever disappears for half an hour and then comes back and hands me three printed-out pages from the Celiac Sprue Association, which they’ve obviously just run out and Googled. I keep having to educate them on the topic. I really need to find a doctor who knows what she/he is talking about and who can answer my questions! I live in New York City… anybody have recommendations? Second: My doctor’s office referred me to a nutritionist, at my request. I called to make an appointment and the nutrionist’s office told me to check with my insurance company first. I did (I have Blue Shield of California—my employer is based in CA although I am in NY) and they told me they only cover nutritionist’s visits for diabetics! The woman I spoke to had never even heard of celiac disease! Never mind that, like diabetes, celiac disease requires a lifelong medical diet in order to maintain health, and never mind that ABSOLUTELY EVERY resource on the topic says that the first thing any newly diagnosed celiac should do is to run, not walk, to a certified nutritionist. I’m sorry I don’t have a more popular disease, but celiacs need health care too!! Argh. As you can tell, I’m just about ready to start breaking some skulls (figuratively, of course!)—it’s so frustrating to deal with a health care system that exists solely to prevent sick people from getting health care! But all of you know all this (at least, those of you in the US certainly do). Has anyone fought the insurance company to get care? Have you won? Does it help if your doctor calls? Has anyone taken them to court? I have no money, but I am willing to fight. Thanks in advance for any help—I keep posting questions and you all have been wonderful!