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About floridanative

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  1. I was actually super disapointed in that part. I hated that she said that they had to remove gluten and then only mentioned removing wheat........bummer for the mis-information!!! Hopefully she knows that gluten is in more than JUST wheat....


    Jessica - you're missing the point - I know you're smarter than that. You're very insightful for such a young person. Consider this: my first doctor (the one that was smart enough to run the Celiac panel on me) told me I'd have to stop eating bread if I had Celiac. He never mentioned gluten or wheat - EVER. The point is if people hear about the wheat free/dairy free diet for Autism, they'll Google it as well and figure out that gluten is in everything and is much more than just wheat. This exposure will help countless families with Autistic families and will give us a hand up as well - everyone on the gluten free diet will benefit because the more demand, the more power we have.

    On the show Jenny said 'in laymens terms it means wheat free/dairy free' when Oprah asked about the diet. She said that because her purpose was not to explain the gluten-free/cf diet. She just wanted other Mothers to know how much it helped her son and that she could NOT believe none of her doctors told her about it. To that I say - why would they tell her about a diet that no industry benefits from financially? Except the gluten-free food companies I mean. No - doctors aren't going to tell people about any diet that can benefit them but they'll be the first to cram meds down our throats.

    Though I don't have kids I felt so sad for all the Celiac Mothers out there who were made to feel dumb by doctor after doctor - just like Jenny and Holly were. They were talking about exactly what so many of you went through with your own kids. We owe a debt of gratitude to these two ladies. Do you know how many shows have been doing huge Autism stories lately? A LOT of them have aired in the last year and this is the first time anyone has mentioned the gluten-free/cf diet as a possible cure - though people with Celiac know all about the connection. It's a shame for all those stuggling families and if I had to pick a disease for anyone's kids to have it would be Celiac over Autism any day. Let's be happy about all the good the show did for the families with Autistic kids instead of being aggravted that the diet wasn't explained in full detail. We need to look at the big picture here.

  2. Please......don't get me started in on CPK. One of my friends thought they saw CPK on a gluten free menu list from a google search. So I checked and there wasn't ANY nutritional info on their site. I e-mailed them, inquring about gluten free menu options. Here is their reply - "When it comes to eating a healthy diet, we suggest you try our whole wheat pizzas without cheese". Yep - that's what they said. I e-mailed them back and told them unless they wanted someone to sue them, not to EVER send that note out to anyone in regards to gluten free menu options. Then someone from CA (from quality control) called me to profusely apologize for the ridiculous goof. He left a 3 minute voice mail as I was not here. I called him back but got his v-mail so I told him I'd like to know when they started offering gluten free pizzas in Atlanta. I never heard from him again. CPK used to be cutting edge - now they are not only not a leader, they are not even a follower of trends. They told me they don't know what is gluten free on their menu and didn't bother to offer to find out.

  3. Sorry to confuse you - the neurologist I spoke of paid cash for his London treatment and is not in the movie at all. I was just making the point that doctors here will literally let you die if you can't afford treatment before telling you there is alternative treatments that are much cheaper out of the US. And not just in Mexico. This was not a point made in the movie either - just my personal observation and the doctor who lived it's truth.

    I agree that the US gov't can't run a healthcare program and that's why I'm not planning on living here forever. If the US citizens had a healthy lifestyle - and let's face it most of them do not - there might be an answer to this horrific problem. If Brittian had hoards of obese people coming in for treatment, they probably could not afford to offer the care they do now. The average American wants to eat junk, not exercise and take a pill for everything. This is very unlike most of the rest of the developed world. I'm not trying to offend anyone but when in Europe on vacation we can almost always tell who is American by their size. True the normal or thin Americans don't stand out but if you see someone who's obese in Rome, London or Paris - 99 times out of 100 they are American. I proved my point more often that I was comfortable with so I stopped playing the game. It really made me sad to see how unhealthy Americans are as a whole. I never thought about it until I went to Europe and saw it first hand. It's really shameful to me. How many people are dying from hunger all over the world and we're (not me mind you) over here supersizing everything.

  4. Oh yeah - that's the only bun I've found edible and I would certainly order it out, were it available to me. I'll let my Mother know if she goes to Disney with my sister/kids they need to do MGM just for the burger...lol!

  5. I asked about this product a couple of weeks ago after DH found it in the health food store. Apparently it works for some when they've been glutened. I was thinking I would buy and keep it on hand for when I travel but I'm not sure it's worth the money. If I ever get a little bloating from cc issues, one Pepto tablet makes me better in a bout 30 minutes. The small bottle of GE was over $18.

  6. Let me start by saying that if you despise Michael Moore I understand but don't care to discuss that. Generally his movies are pretty one sided but this one was very different in my opinion. He even slammed Hilary Clinton for taking donations from pharma companies and he used to worship her. He's not to the left or right on the healthcare issue - as I understand his points anyway. We were in town for the 4th so we went to the movies and I felt sad and angry that the US is so screwed up regarding healthcare/insurance/drugs - and 37th in healthcare quality world wide - WHAAAAAAA?!

    We have the best doctors in the world here but the best I've ever met were not even born in the US. A Neurologist that advised me about a condition he had, and that my deceased MIL and her brother had, told me he was ashamed of the doctors he met in his quest to save his life. He ended up in London for treatment - about 1/10th the cost of treatment here - but it was a different treatment. No on in the US told him about the treatment but he eventually found out that his US docs had been to a conference where this treatment was taught about. In the sick docs words 'why would they tell me I can save 90% of $150K by going to London? He says he was proud of his profession until he got sick and had to deal with greedy docs himself. Now he's simply ashamed that so many US docs are all about the money and not about helping people.

    Okay so my question is - did anyone see the movie and if so, what did you think about it? I knew about a lot of what was shown but not all of it. I always thought Kasier was the devil and now I know it's true. I'm talking about the guy who started it so please don't tell me why you love Kasier insurance. I know too many people they screwed over to count - my own Grandmother being one of them. The movie isn't about Kaiser but just played some Nixon tapes approving the HMO idea in the early 70's.

    I recommend every American see this movie - even the ones who really really hate Michael Moore. It will really make you think about a lot of things which I can't explain in a post. My husband and I are going to research where his international company has jobs where we could learn the language and will consider trying to move closer to retirement age - if of course we can stay in the chosen country once he retires. We'd actually thought about this before but now it's more serious. I'm actually scared to live out the latter part of my life in the US. Oh and if you do go to the movie make sure to look closely at the scroll of diseases which are conditions you'll be automatically rejected for insurance in the US. Make sure and check the 'C' section.

    I love America (so please don't tell me I don't) but you don't have to love everything about a place or person or anything. We are so screwed up on this issue and I just don't think the problems are fixable at this point - and certainly not by the time I'm in my sunset years. More and more people are retiring out of the states and now I totally understand why. Most of them would rather stay put but also want to enjoy their retirement and not worry if they can buy meds/pay for medical care. I mean we save and we invest and in the end, one big bill from a medical emergency/illness could ruin us financially. Blue Cross already tried to drop me two months after I was diagnosed with something that's not supposed to be mentioned in this thread.

  7. I've never made it to the Alpharetta Natural Foods Warehouse, though I heard their prices were great. It's almost an hour from me which it just a little too far to drive for groceries. Well they finally opened a second location about 20 minutes from me so we went on Saturday. It's a bare bones, concrete floors kind of place but they prices are unbelievable. They have gluten-free Pantry flour for under $3 a box. Their Bell & Evans gluten-free chicken fingers are $3.50 - at WF they are $6.99. I got wheat free (gluten-free) terriaki sauce for $.94! It's a small bottle but that's good in case I don't like it. They have the same brand at WF for over double the price. My Amy's soups were $.50 less a can than anywhere in town. There weren't many customers there so I hope they build their business and stay open. They have been open about three weeks I think. If you live in the Metro Atlanta area this is a place you should check out.

    My DH was checking things out in the store when he saw Glutenease. It's supposed to help digest gluten but is it for the average person or people who can't eat gluten? I was thinking it would be good to have on hand when traveling in case you have to eat somewhere that you don't know. Like take the pill before you eat in case they screw up your meal...is that what this product is for? I'm sure there must be a thread here about it so can someone point that out to me please? Thanks!

  8. The very best pasta to me is Bi-Aglut but I hate paying frt. for food so I avoid it when possible. I use Bionaturae but it contains soy flour. I think it tastes the best for the money in the gluten-free market. Dr. Schar is also excellent but another one that I can only find online. All three of these are actually made in Italy as far as I know. When WF puts the pasta on sale is $1.79 a bag and I get about 10 bags. If you find it make sure to get the red label gluten-free stuff - they make wheat pasta as well but not on the same lines. They are considering making lasagne noodles but don't have the equiptment for it presently. They only make wheat lasagne noodles now. I think I read that Bi-Aglut is the number one selling gluten-free pasta in Europe.

  9. The information that I posted was correct as of 5/14/2007.

    As my post stated, Duncan Hines has changed their position on their creamy homestlye frosting at least four times in 18 months that I know of. I had to return a can when I mistakenly bought it after I had gotten it gluten-free before. The newer can clearly stated barley on the label. Any company that changes their position that many times is a company I'll do everything to avoid buying products from. They could say their stuff is gluten-free for life and I'd never buy it again - not because I don't believe it's gluten-free, because I don't want to patronize companies that I don't think care about the gluten-free market. If you read all the chemicals listed on the DH brand gluten-free frosting - that alone is enough to keep healthy eaters from consuming it. I don't care what others eat but I refuse to put all that crap in my body now that it's so clean. I can't see going to so much trouble to remain gluten free and then eating chemicals and things like MSG on a daily basis. I understand a lot of people do this, that's their business and what I eat - or don't eat in this case - is mine.

  10. Actually, DH said their homestyle frostings were okay, then not.....it's on again off again with them and I've taken products like that off my shopping list. Their frosting is full of crap anyway, gluten-free or not. I bought a can before I was careful about limiting my food additives and it clearly said barley malt on the label. That was a year ago. In early 2007 they told Clan Thomson that their frostings changed ingredients all the time so they felt they should state they are not gluten free because they don't know which batch will be and which won't.

  11. Their Decadent Chocolate Frosting in a jar is the best such product I've had. It's very rich, creamy and seems homemade to me. I used it on Cherrybrook Kitchen chocolate cupcakes and thought they were good enough to share with gluten eating neighbors. It's pricey but worth it when you don't have time to make it from scratch.

    Our Trader Joe's has a lot of new gluten-free products since they opened in Dec. last year. I also eat their frozen chicken taquitos and their wonderful sorbet's. The coconut sorbet contains dairy which is odd for sorbet but it is to die for. You can't beat their price of $1.99 - I'm used to spending $3.99 at WF. If something is made in a plant that processes wheat, that is on their labels. If something is made on lines that produce wheat products, those aren't on the gluten free list. They are very concerned about cc issues which is more than I can say for most companies I've spoken to. They have a flourless choclate torte in the bakery section but I haven't tried it yet as hubby is allergic to dark chocalate.

  12. At my ex-Mexican restaurant they told me their corn chips contained corn, oil and lime and they do. But they neglected to admit that they fry them in fryers where they fry their flour products in the am. Another Mexican place told me that it's rare to find a place where they have one fryer just for corn items. I reacted to the old place corn products so I stopped going. I now have a new place that does have a fryer where they only put in corn items and I eat there without issue. It's an extra three miles to get there but worth it not to get bloated. So far I've not found an enchilada sauce in a restaurant that didn't contain wheat.

  13. I rarely watch the Today show (GMA person) but when I turned on the tv today it was on the NBC channel. They had a teaser about dealing with bloating so I decided to see what they said.....intending to e-mail the show when they neglected to mention Celiac. So I was pleasantly surprised when Ann Curry asked if there could be serious issues with bloating and the woman answered 'it could be Celiac, Chron's, Colitis' and some other things. I was so shocked to hear Celiac that I didn't listen to the rest. They did not address any of the diseases but at least they put it out there that some serious medical conditions cause bloating which is more than I've ever heard when I've seen segements on the issue before. I am e-mailing the Today Show to thank them, even for this slightest mention of Celiac.

  14. I just wanted to say that although I think it's a great idea to get help here when trying to pick out a place to eat out in your area. However, it's important to remember that your experience might not be the same as others - even at the same location where others have had great success. I rarely eat at chains anymore but when I was first dx'd, I went to the Outback nearest me. Getting my meal to go from there seemed fine but eating there was a disaster....no current gluten-free menu, no manager to be found, it was just awful. I got sick and never went back - but I never liked Outback so I wasn't missing anything. I noticed a few weeks ago that Outback had closed and I'm not surprised as it wasn't run very professionally regardless of what you ate there.

    We have two PF Changs in town - one is pretty good and the other seems very uninterested in feeding gluten free diners.

    Our new Red Robin is a joke re: gluten free but in many other areas of the US and Canada people love eating gluten free there. When they had to redo my burger (after obviously removing a bun in the back) which took forever, the manager offered me a coupon for onion rings - that was it. When I explained that I could not eat them she had nothing else to offer me. Corporate offered to send me a gift check but I didn't feel right getting and knowing I'd just give it to a friend since I'd never go back.

    I'm just hoping that newbies that are trying to learn how/where to eat keep in mind that every single gluten free dining experience is different. There is a chance you'll do fine and a chance a place will goof and make you sick. I find the nicer the place, the better off I am and so I spend the extra money for great tasting (not bland), safe gluten free meals. One day mid level places may improve but for now you really need to go over everything with the server (or manager) even when they have a gluten free menu. The average chain employee could not tell you what gluten was if their life depended on it.

    Though I eat out once a week, I would not dare eat out once a week if I was going to the chain places that have gluten-free menus. I'm much more confident at places with real food, not loaded with MSG, which I can't tolerate anymore.

  15. mamaw is correct. This event is a fundraiser and the attendess they really want there are doctors. They figure that people with Celiac already know way more about Celiac and gluten free food than most doctors, of any discipline. One of my own knucklehead ex docs told me flat out 'you know all the food you love, well you can't have any of it on the gluten-free diet and who would want that?' They think we can't follow the diet and that fact may be keeping some of them from even testing for it. Part of the money raised from the cooking sprees goes to the hospital of the winning dr. to start an awareness campaign, and some to the support group in that area. The VIP tix that are $100 get you some food and some Redbridge beer as far as I know.

    I'm in charge of getting the docs signed up for Atlanta. I have four booked and need 6 more. If anyone reading this knows a doc affiliated with Grady - I'd greatly appreciated their contact info. The Atlanta event is at the Hyatt Regency downtown, on Oct. 27th.

  16. I picked up my copy of People today when I was at the grocery store. Any publicity has to be good publicity, even if Lindsay Lohan is on the cover.

    I totally agree! The fact that this article actually got published is beyond belief to me. Seriously - People magazine is the last magazine I'd think would do such a story. I can't get over it - I think we have finally hit the mainstream and that is a very good thing indeed!

    If you want to thank 'People' their e-mail is editor@people.com or editor@peoplemagazine.com - I forgot which it is. Even if you want to ask them to do a more in depth piece next time (like they did on Autism last week) that would be good to. The more of us they think there are - the better.

  17. Yes - that's the idea. Every time we say gluten to someone who doesn't know what it is, we're helping ourselves and everyone else that's gluten free. We're not going to wake up one day and the whole country is going to know all about Celiac and gluten and more importantly, how to prepare gluten free food for us. It's going to be long, drawn out process and if we all do our part we can speed up the process. I really didn't know much about Parkinson's disease until Michael J. Fox got dx'd with it and started talking about it. We don't have a Michael J. Fox for Celiac yet and we can't afford to wait until we do. It's up to all of us for now. You know what they say about one person being able to make a difference. Well in this case, with all of us getting involved in a grass roots effort, together we can make a huge difference. There is power in numbers and the rates of Celiac dx's are climbing at a staggering rate each month. Soon we will be a force to be reckoned with and that will be a very good thing indeed!

    Thanks to everyone willing to pitch in and get the word out about Celiac, gluten and how to feed us all safely!

  18. Someone on this board recently posted about how she got her Manhatten co-workers to go to Starbuck's and order their test market gluten-free brownie so Starbuck's would think more people wanted the brownie than really do. I think this is a brilliant strategy. A few weeks back, someone on the Celiac listserv asked everyone to contact Uno's Pizza and inquire about gluten free pizza because they already knew Uno's was working on bringing in a gluten-free pizza. Knowing there is no Uno's here I knew it would not benefit me right now if they started offering a gluten-free pizza but I wanted to help others who could enjoy a hot gluten-free pie so I contacted Uno's, they ended up asking me for suggestions on pizza mixes etc. It was only later that I realized there is an Uno's where my in-laws live so I'll be going for a visit as soon as I know the pizza has hit the market!

    Now here is what I'm asking those on this board to do to help those of us who eat out, even if you don't personally eat out yourself. Ask restaurants if they have a gluten-free menu if you are there for a function even if you're not planning to eat anything and you know they don't have a gluten-free menu. Stop in a place in a strip mall and inquire about a gluten-free menu when walking by. I'm not talking about asking Outback or chains that you know have such a menu - ask every place you know that doesn't. I'm not talking about getting in a car to go ask the question. I'm talking about taking a moment to ask about gluten-free options, even when you are certain there are none. This will raise awareness that there is a market out there that is being greatly underserved. Who knows, one day you might feel comfortable eating out again if the market place does what it should do, to allow everyone to eat out safely, even at mid price places.

    The only way things are going to change so that you do feel safe eating out is if everyone who could eat out acts as if they would, IF places knew how to feed them safely. I don't really care if anyone who doesn't eat out now ever does again. It's not my business or concern - but if people with Celiac don't band together to address this issue and help each other, well we can't complain about how hard it is to eat out without spending $50 on dinner can we? I helped with the Uno's campaign, even though I was bummed to find out there is no Uno's here and now I find out that Atlanta will be the next major city they open in because they get more requests for it than any city natiowide.

    I hope you'll really think about this idea and consider pitching in. You never know who you're helping and since my Ceilac dx, my life has been blessed because I decided to help others once I learned my new lifestyle. What I get back from those I help is absolutely priceless. Our gluten free dinner group is now the second largest in the country and we're teaching restaurants all over Atlanta how important it is to feed us safely - and not boring meals, but great tasting, flavorful, wonderfuls meals. Life after a Celiac doesn't have to mean no travel or eating out. It's a personal choice and one can only do these things safely if one demands (nicely) that they get the service they deserve. I guess I'm lucky - I was always a 'When Harry met Sally' kind of restaurant patron so having to order gluten free isn't much of a stretch for me.

    Hope everyone has a great long weekend!

  19. I got lots of help from listserv on places to eat in New Orleans when on vacation. We stayed in a B&B and the hostess/owner went out of her way to feed me breakfast safely. Artichoke/parmesean fritta one day and Canadian bacon one day, Crawfish omelet another (coverted from crepes recipe but offered to go buy gluten-free flour for me) and one the day we were the only guests she made us bananna French toast with my own bread. She asked me to check the bacon/sausage ingredients when we arrived. We had a large communal fridge to store snacks and my own scone for the day she made scones and souffles. I went over cc issues with her and she really blew us away with the service she gave us. If you want a B&B experience in NOLA, check out the Southern Comfort Bed and Breakfast. Search the term on Trip Advisor and google for her site. They have free wifi there too! It was fantastic! She does need to know if advance if a guest needs gluten free food.

    For our first dinner out we opted for a burger joint one night (baked potatoes the size of your head) called Port of Call. It was quite the experience and our only cheap meal of the trip. Mostly we ate here because we could not get in anywhere else as it was Mother's day and we forgot to make reservations.

    Next night we went to the #1 rated place in town, GW Fins. The Chef that fed me was on Live with Regis yesterday and said they are opening up in Charlotte NC soon. Can't wait to go see the in-laws and check it out!

    The overwhelming choice for best gluten-free place in town was Irene's Cuisine and that's shocking since it's Italian fare. However, their house specialty 'chicken rosemarino' or somthing like that, was naturally gluten-free. Just had to sub potatoes for the pasta side. Their gluten-free choc. cake was scrumptious for dessert!

    On the last night we went to a tourist trap but the food was still outstanding. Their bronzed fish dishes are gluten-free but blackened ones are not. I can't stand blackened so that worked for me. They only had creme bruless for dessert but I'd been spoiled the other nights so I skipped it so hubby could have their signature award winning pecan-sweet potato pie. He LOVED it!

    We chose NOLA for vacation to help support the community without thinking too much about the regional cuisine - gumbo, beignets......many things I can't eat. I could not get over how well the nicer places' staffs there are trained re: gluten free food prep. and so many things on their menus needed little or no modifications at all. They are after all a tourist city (with international Celiac tourists) so they were well ahead of the curve in my opinion. I thought Atlanta was pretty good but NOLA is a step above us here.

    Also, we stopped in to Orange Beach, AL for a few nights and had one good meal out and one bad. Both were gluten free. Calypos Joe's is a tourist trap with bad food - gluten-free or not. Upstairs their sister restaurant Mango's is wonderful. Their Chef knew about gluten, cc and his choc. dessert was something I ate on for three days.

    If you want to visit NOLA again, or for the first time, I highly recommend it. It was noticeably quiet on Bourbon Steet. Still great music everywhere but it was sad that there weren't many tourists down there.

    Who knows maybe one day they'll come up with a gluten-free beignet for us! Someone there is eating a lot of gluten free food because their WF is well stocked with all the brands we have here.

  20. This is funny!

    How about when a hemotologist tells you 'you're a woman, women get anemia. As soon are you get through menopause your anemia will go away' and you're only 43 at the time.....and have not started menopause yet?!!!

    Also, my dx'ing GI told me 'you can still eat rice, corn and potatoes and hung up' - literally. I fired him that minute though he didn't know it until he got my letter explaining a few things to him about the gluten free diet and how NOT to treat future patients who had it.

    On the flip side my pcp was honest to say she was told she'd never see a patient with Celiac but now she has serveral with it. Her assistant called the other day and asked if I'd ever heard of someone being misdx'd with MS when they actually had Celiac (she pronounced it selliac) and I said YES!!!!!!!!!!!!

    She also asked why so many people were being dx'd with Celiac (again pronouncing is incorrectly though I corrected her the first time). I reminded her that I'd told my doctor this was coming over a year ago. Sometimes people just don't listen unless they are hit over the head.

  21. I got a call from an aquaintance of mine asking me about the gluten free diet. Her Mother was just dx'd with Fibromyalgia and was told she should go on a gluten free diet to help her symptoms. As I understand it, Celiac was not brought up, nor has this person been tested for it. The dr. explained about how gluten was in so many things and suggested a strict gluten free diet. So why in the world should someone try the gluten free diet if they have Fibromyalgia? Is this common? I know it's common for people with Celiac to be misdiagnosed with Fibro but if they really just have Fibro would the gluten-free diet help? Thanks if anyone knows anything about this.