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notme!

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  1. too many of us are treated this way, unfortunately ^^^^^ and many of us have been in the same (no quality of life! always sick! ) situation and yes, it can be life threatening if left untreated. so glad you're feeling better no thanks to the almighty doctor i have a celiac diagnosis and my g.p. (who i go to - or used to go to - for my check ups, see how my blood pressure is, vitamin levels, etc. normal maintenance, you know) tried to give me viberzi!! for my ibs-d !! what??? i have celiac. i was furious!! (i'm still pretty upset) o, the good news was that he gave me a coupon for the first month. after that, it's THIRTY DOLLARS A MONTH. not to mention all the lovely side effects (one of them was diarrhea!!) no, thanks, buddy.... anyways, rant over lolz - welcome to the forum!
  2. my first trip to the grocery store i had a meltdown and didn't buy anything lolz i like udi's bread or rudi's is pretty good. if you have a red robin nearby, they will sell you the gluten-free burger buns (and they are yummy) good luck !
  3. i've had good luck (and people at my church compliments') with betty the box cake mix - i use melted butter instead of the oil, i add an extra egg, and a tablespoon or so of sour cream. i've doctored the chocolate cake into red velvet, same thing everybody was amazed that it was gluten-free. morna, i would love to hang out with a celiac sista but i'm stuck most of the time with these little creatures that call me 'meemo' the husband and i had tickets to the sister hazel show at the coliseum, we told everybody about it TWO WEEKS AHEAD OF TIME and i was still dropping off kids here and there the night of the show!! (hey, man, can ya watch your kid for me tonight???!! lolz) daughter works nights, son works days.... ended up dropping 2 at my brother's lololz my not-son works at central flats and taps. they have wine and an outdoor patio i may or may not have sneaked bards in with a backpack and a koozie
  4. my celiac was triggered by pregnancy. had no clue. symptoms creeped up (started with indigestion, deemed as 'colitis' or 'ibs') but eventually all the ones you mentioned above all joined the party. sounds like you are headed in the right direction. one of the points of diagnosis is the reaction to the gluten-free diet. keep digging. half the people on here don't have a firm diagnosis (science really needs to catch up with this disease) and a false negative blood test is fairly common, for whatever reason - if you've not been eating gluten every day for like 8 weeks, it may not detect antibodies, which is what these tests are measuring. sorry you're having this dilemma! hope you find some answers.
  5. tom & chee! good to know they grill the sandwich on a separate pan? or do you just order soup and salad. so cool to find more places to eat out!!
  6. orange juice would tear up my stomach. is there cream in the broccoli soup? i don't do well with lactose sometimes *still* and i've been gluten-free for 6 years. oven issues: use the top rack if baking uncovered or make sure your gluten-free stuff is covered if using middle or bottom racks. i would be cautious to self diagnose unless i was able to rule out some Very Scary Stuff, medically. if it's not celiac or gluten related, you wouldn't want to let whatever is making you sick to continue to do so until it is debilitating or too far along to be treated. good luck.
  7. i have anywhere from 2-5 kids getting off the bus here every day and they are all gluten eaters (although i think one grandson shouldn't be, but that is another fight for another day) so i buy lunchables and keep them in their very own fridge drawer. they bounce in, wash hands, get a paper plate and a lunchable and a juice box or water. they can eat in their designated area (coffee table or tray table) while they do homework or watch tv. i wipe everything up when they're finished and they haven't got me sick yet. i like the lunchables because they can do their own thing and i don't have to fool with it. self contained and they throw all the trash away themselves. we'll order a pizza every now and again, but, same rules. to their credit, they are pretty respectful not to make meemo sick but you will hear me holler every now and again: STOP WAVING THAT AROUND YOU ARE GETTING GLUTEN EVERYWHERE!!! but not too often. they're ages 7-13. if i feed them full meals, they eat gluten free. or starve to death <house rule lolz "eat it, don't eat it, starve to death, i don't care, but you're not getting anything else." torture, i know...
  8. soap and water. learned that my first camping trip hand sanitizer is made of grain alcohol. also, if you're handling anything wheat-y, (like fixing hotdogs on buns for the kids... ) the hand sanitizer will only spread the gluten around and you'll just have really super sanitized gluten... same thing with clorox wipes. if she can get to soap and water, that's her best bet. i used to worry about what brand soap and you can go crazy trying to research every different brand that facilities use, but just make sure she rinses really well. soaps have a rinsing agent that makes it easy to get it all off. one of my best friends is addicted to bath and body works and that's the only soap she has at her house and i use it, no problem. i just rinse really well.
  9. i'll hafta try salsarita's!! indeed, it is humbling - i was a spoiled 'food snob' but i have since learned to improvise/compromise (ok i'll eat that because it beats starving lolz) (or, ok, y'all are going to eat at my ex-favorite chinese restaurants, but i'll just eat my turkey sammich in the car. no big. ) i'm from jersey originally, so, my holy grail is decent pizza - even before dx i finally found the perfect place: metro pizza in maryville. since husband delivers to denso, i used to have him stop and see sal (sal is dead now ) from hoboken nj. or big ed's in oak ridge. but, no more. when i was in nj this summer, my niece brought me a california pizza and it was delish. gravy scraper = eats the regular meals and scrapes the gravy off the meat/takes the burger off the bun/scrapes the pie out of the crust. he showed me the dh on his hands - all kinds of cracked and blistery. i'm like WHYYYYYYYYY?????? we are in the lions club and we meet at the HOSPITAL and their caterer can't do gluten-free. i had the beer dilemma, too. publix in t.c. has a few different brands - new grist was pretty good. redbridge, which i originally drank in the beginning, is just horrible. plus it will stain your teeth! i set up a deal with my local tobacco guy to have bard's delivered to my town. i have the distributor's # if you want to see where they carry it so you can try it. funny story - my son works at lexus of knoxville and he set up service on the guy's car hahaha small world. he says "that's your mom??!! she's one of my best customers!!" lolz idk if i'm happy or sadly pitiful with that one don't really care - i need allllll the calories i can get!! i found the fb group and joined. stacy, your husband is too funny
  10. LOLZ! and don't forget the bats!! or is that just this side of the atlantic??
  11. lolz! i *always* eat my bacon cheeseburger at rr like this: OM! NOM NOM NOM! i mean, yep, right out loud!! and i am (regular people don't understand) always sooooo appreciative of eating out - good. ness. one gets sooooo tired of fingerprinting every meal. just bring me food, set it before me, i shall be eternally grateful. aras, if you were at rr, you were right around the corner from that bakery. yes, it is dedicated. trying to think of what i bought...... a cherry (almond?) scone i think and a cinnamon bun? either way, they were very 'heavy' if you know what i mean. like, dense, not so cakey/fluffy like i was expecting. i did go in there and almost cry because there were so many things and all gluten-free. then i cry did when it sucked lololz but i did get puff pastry there and i want to say there were ravioli?? i will go back again, i just won't get any baked goods <ok i probably will because i'm a sucker haha) there are a few other people in my town - 3 have actual celiac (a friend of my 12 y.o. grandson, one old guy who is a gravy scraper and an older lady wife of a doctor, no less, who tells me she has it while she is jamming a wheat roll in her face lolz) and a 25 y.o. who is gluten intolerant. so, not much support in RoCo lolz. if i had a nickel for everybody in church who makes 'discoveries' for me, i'd be a rich woman "GUESS WHAT??!! dominoes has gluten free pizza now!!!! yay for you!!" yup, yay for me, i won't be eating there lolz if you go to a show at the shed/harley place in maryville, you can bring a cooler with beer and leave it in the car. they'll give you a cup and you can walk out and refill. just be cool about it. getting beer into bristol - put it in empty water bottles and it stays just fine (me and the husband with a funnel in the middle of the parking area lololz) when my friend used to run the well in bearden, she used to let me bring a six in and the bartenders would 'serve' them to me. barleys = jerks about it. you hafta sneak it in (but it's easy ) stacy: i looked for the fb page yesterday and couldn't find it? i will look again waving to y'all !!
  12. i am in roane county DO go to the red robin in turkey creek and if you go on a saturday night, you can ask for paula - she will make sure you are safe! actually, go anytime and you'll be fine. they do a good job. i eat there all the time. i even order burgers to go when i'm going to a cook-out or something that i don't want to hafta fool with packing my food. also, they will sell you the gluten-free burger buns - i have some in the freezer right now bonefish is also good and safe. pf chang's and i'm hearing braziero's? <but i think ima hafta save up for that lolz $$$ there are some places in market square (check the findmeglutenfree app) i've eaten at cafe 4 with no problem. i hear tupelo honey is good but haven't tried it. oh, and the bakery, if you''re talking about the one on campbell station rd, isn't much to write home about....... but they do have some things in their store that you won't find other places (puff pastry comes to mind, you know, stuff like that) i've eaten at both mellow mushrooms in pigeon forge, (the one that's not on the island has a bigger gluten-free menu) i hear dixie stampede has gluten-free menu and melting pot is gig certified although i haven't eaten there..... i thought it was bad trying to find somewhere safe to eat out around here until i went to tuscaloosa alabama. nightmare. good thing i brought all my foodies
  13. ibs is doctor-speak, meaning: don't have a clue what's wrong with you..... irritable BOWEL syndrome refers to the small bowel as well as the large. that NON diagnosis and lack of any effort for 25 years to pursue *why* my bowels were irritable just about killed me. was also told i had 'colitis' .... kurasz: you probably have celiac, the diagnosis that shall not be named lolz (because the medical industry can't make any money from a gluten-free diet) many people on here were mis-diagnosed for many years - lots were told they had fibromyalgia but oops it was really celiac causing fibro symptoms. lupus, ms, etc all misdiagnoses that were actually celiac causing symptoms. now, if you have celiac with a wheat allergy, do you have an allergic reaction? like, do you break out in hives or go into anaphylactic shock, etc? there is something that they are just starting to research/recognize and that is mcas (mast cell activation syndrome) that has to do with a combination of celiac and histamine reactions (and there are crazy triggers, like excessive temperature change, chemicals, fragrances, air quality, pollen, etc) it's not very common and it varies in degrees, but still something doctors don't even take into consideration....
  14. yeah, what gem said ^^^^ this 'imaginary google disease' nearly killed me, too. i'm 5'8" and i was 97 lbs before anybody even said the 'celiac' word - it must be the voldemort of the medical profession. sorry that you're having so much trouble, but truth be told, it's the last thing they want to test you for. because there are so many treatable symptoms that they can make $$ on without fixing the (systemic = causes the symptoms) underlying problem. no pill for celiac, and once you're better (on a gluten-free diet, all these things clear up miraculously) you have less of a chance of developing worse ($$ treatable or requiring surgery $$ ) the longer i hang around here and hear all the stories of people being told they are nuts for wanting a (relatively inexpensive, so WHY NOT???!!) SIMPLE blood test, the only conclusion i am forced to come to is that the medical profession is steered away from diagnosing celiac or ncgi comes all down to the almighty dollar. welcome to the forum
  15. o, i see what you mean. one of the hardest things i had to learn was to stop licking my fingers lolz