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Posts posted by lizzy

  1. Hi all

    well i have done 3 days on a small amount of gluten and so far my lymph nodes in the base of my head near my skull are swollen and sore and i think i have one under my arm pit too as its really tender. i am going to leave the gluten alone today to see if they go down, i cant believe after such a small amount my body would react so quickly and if so i may chuck in the towel early. like you say whats the point of making oneself sick ,just to get a point over. thanks for all your help liz

  2. Some say it can take 6 weeks. Others say it can take far longer. Thing is, it will have to cause enough damage to show up in the biopsy, and of course they have to check the right area to see the damage. However, if you can be sure that your doctor will give a diagnosis based only on blood work, it might take less time since it would be a matter of detecting the antibodies. Plus it could mean not having to eat so much gluten either. But, I've seen many posts suggesting that doctors still rely on the biopsy as the "gold standard".

    If you go through with it, I hope you get the right diagnosis without getting too sick!


    THANKS for your reply. i now live in england and they do it more by blood test than the other cos of the cost. a friend of mine just had to do the same thing to get a result , if i think that i am getting too sick back on the diet i will just simply stop it and get back on the gluten free diet.but so far for i dont feel any different but i guess time will tell liz

  3. Hi everyone!

    My friend and I are going on a trip this August for a few weeks to England, Scotland and Ireland and we want to start the trip out with a tour to get settled and comfortable. She brought some info over about a couple of different companies that do tours and we really like how the contiki tours sound. It said that the tour includes continental breakfasts every day (it is 10 days) and then four three course meals and the others are on our own. I am worried the the breakfasts are goign to be muffins and danishes. I called contiki and talked to someone last night and he said they are good about trying their best to meet different food allergy needs, but that I can't talk to the tour guide until the tour starts because they don't know who it will be yet. I need to talk to the guide when we get there he said (and they will have my allergy down in the file) and it depends how much that particular guide goes out of their way to help me. Has anyone done a contiki tour? Or any suggestions for this situation? I can take a bit of food with me for the start of the trip which would be this tour, but I wont' have a ton of room b/c we are just taking backpacks.


    We need to book our tour within the next couple of days.

    Courtney :)

    HI I Live in england and they are plenty of shops that sell gluten free things you can buy. and most places i have been to have gone out of they way to supply me with breakfast items. hope this helps . when it gets nearer your trip i will tell you the good places to shop. hope you enjoy your visit over here

  4. Can you get your medical records transferred from IL?

    I would also make sure you get a second opinion on the skin cancer...

    If you do have skin cancer, I would go grain free & check into the vitamins that you should be taking in addition to the treatment that the doc recommends - although the vitamins needs to be co-ordinated with the doc - just do evertyhing you can to make sure you get a good doc.

    HI thanks for your reply,

    i take vitimins and have done since i stopped eating gluten and i make sure they all gluten free. as for the skin cancer it is what it is with out a doubt and i have only myself to blame for it as i have always loved being out in the sun and have sunbathed endlessly. we all listen to what sun damage can do to you but like anything else you dont think it will happen to you , until it does ,

    my doctor says i will have to have a tan out of the bottle from now on no more direct sun for me.

  5. Thanks for your reply. my husband gets so cross with these gps who dont understand what there saying, i saw another who was just a stand in and he said the same about my negitive blood test and my husband said you didnt see my wife when she was so sick and the responce to going gluten free and how i got results of getting better in a week. the doctor just shugged his shoulders and said well if it courses gas and stomach upset i suppose you could leave it alone . my husband was about to pop, but i said leaveit, and lets go home. we know better .

  6. HI ALL

    First of all i wanted to say i have just moved back to uk after living in u.s.a for 8 years and i went to my doctor and said i have been following a gluten free diet now for 3 years, so she tested me for it by blood test and came back negitive. i said that i would have expected it to cos to show positive results you need to be eating alot of gluten for a positve result. she dosent agree with me. so i thought i would put it to you all and see what responce i got back.

    my nuroligist because of this test also believes that my symptons got better by coincedance and i should be totally better where as am still showing nurolical problems. and on friday i went to see my doc with some strange spots ( if you can call it a spot, dont know how else to explian it) to be told i have now got skin cancer.

    any remakes werlcomed so i can go back to her with a responce from the right people who know what they talking about thanks

  7. HI i have tried there sandwiches, which was an egg mayo and was nice, they also offer a gluten free cake but when i asked her not to pick it up with the same tongs as the other cakes she said that they couldnt garentee that no one took care when there put it on the plate that it hadnt been next to regular cake either so i left it. didnt want to take a chance.

  8. I was just reading the Easter candy thread and read the post about Cadberry Creme Eggs being gluten-free. Their label says "Glucose Sugar (Wheat)". I'm a newbie to this, so maybe I'm missing something like that in the form of glucose sugar the gluten is taken out, but if not, DON'T EAT THE EGGS!! I started a new topic because I was afraid some people might not check back and there was at least one person doing the happy dance. Sorry to stop the music, but I'd rather you not get sick!

    Think Reese's...mmmmm...better than those darn creme eggs anyway...think Peeps...cuter than the those darn eggs...think...no diarrhea, vomitting or constipation...way better than those stupid eggs!!

    Have a happy, healthy gluten-free Easter!

    HI i have checked my celiac book of gluten free foods and its listed as gluten free. hope this helps

  9. Don't rely on those blood tests. You can't even really rely on the endo either, it can be hit and miss and while both tests can say for sure that you have celiac neither can say for sure that you don't. The true test is how you feel on the gluten-free diet. You don't need a doctors permission to eat gluten free. There are gene tests but they also can be problematical because there are only 2 genes that are considered celiac genes in the US. If you have one of the other celiac related genes instead you will be told that you don't have the genes and can not possibly be celiac. Gene testing is in it's infancy and not all the genes related to celiac are recognized as such. My gene for example is considered a RA gene here, which I did have all the symptoms of. However it wasn't drug therapy that I needed but a gluten-free diet. If my genes had been tested before diagnosis I would still be suffering needlessly, living off meds that did nothing for the pain. Because it is so important to remember I will say it again, it is your response to the diet that is most diagnostic.

    Dear ravenwoodglass

    i want to thank you for your post i was looking for simurla answers about weather or not to stay gluten free after never having a positive blood test, but after reading this post it brought back all the memories of just how sick i got and how much staying away from gluten made me feel better.

    your right if you feel better after staying away from gluten then thats the proof in the pudding alone. thanks liz


    thanks for your reply. i too was having seizures but they seem to have gone took nearly 2 years to get the under control but still left with other progressive neurolical problems. thats why my neuroligist dosent think the too are related , i would hate to start eating gluten and start being sick again with seizures but he seems to think i should be ok. thanks again

  11. HI ALL

    First of all i want to say hi as i havent been on here in along time. i came here to look for some answers and the first thread i read was about eating gluten . the responsers i read where really good but am still unsure which road to go so let me please explain.

    2 1/2 years ago was really sick went gluten free after reading my syptoms could be a result of eating

    gluten but i have never had a positive result for celiac .

    my illness as once again decided to show its ugly head and my nueroligist says it was a coincedance i got better when i went gluten free .so my deliema is do i go back eating gluten after all this time. Any advice would be most welcomed at this time . thanks

  12. i didnt tell the manager that i had celiac i said food allergys and i was concerned that because of her hygene that other poeple will suffer i had already had a drink from the glass and could taste it but other poeple dont need to suffer, she was putting hand lotion on her hands and her elbows apply lipstick whilst stood behind the bar instead of serving other customers who also looked at her for ignoring them ,she was too busy looking after her looks. it was my oppion she didnt really care enough about her customers and when we asked her to change our drinks it was the whole way of which she did it it was done with no thought to us just begrudgenly. i certantly wouldnt have found the need to complian if she had just been pleasant enough to say sorry ill get some one else but she didnt she shouted over to someone and it was how she said it like we where always complaining when this is the first time i have ever felt the need to do so. it was her whole attetude. i have worked behind a bar and have always put my customers first i have had to deal with poeple who like to complian for the sake of it but i have never been rude to them. and am not crazy either. when your paying 9 dollars for a glass of wine then i expect to taste the wine not someones hand lotion

  13. Okay, but didn't you say in your first post that the waitress got someone else to pour you new drinks after you said something to her? If someone gave you a set of new clean drinks, game over, problem solved. There's no need to keep complaining if your grievances have been addressed. Insist that the second server be your designated server and enjoy the rest of your evening. If a server knows that you won't take her crap but will be forgiving if she attempts to resolve the issue, you'll get good service. If a server gets the feeling that nothing she does will stop you from harping on a mistake she made earlier that evening and you're going to complain to her boss anyway, she'll write you off as a loon and continue to apply handcream to her heart's content.

    At some point you need to make a decision: do you want to be RIGHT or do you want to enjoy your evening? Sometimes you can't do both.

    the point is that in this place we go usualy the person who first serves you takes care of you all night i dont know how they share they tips or weather they keep what they earn i dont know each place we have visited have they own system and yes once the other girl served us we did leave her something separate to the one who was suppose to take care of us what am harping on about was her attitude towards us it wasnt called for . anyway this is getting no where i dont know why u took this so personaly when i frst posted this message i am a chef but i dont get upset if someone complains about another kitchen i just do my job to the best i can give , but you seem to have taken a fence that i was talking about all bartenders when this wasnt the case. so i think that this post now needs to end i didnt come on here to upset anyone liz

  14. Here's the deal. While there is such a thing as "bartending school" (where they teach sanitation issues and such), most bartenders have not attended such an institution. I never attended one. Most bartenders (and practically ALL cocktail waitresses) are hired on the basis of a) their personality, B) their looks, c) their past experience, d) how well they know the owner or e) some combination thereof. It's not fair, but it's the law of the jungle. If, as you claim, this is a larger establishment, they probably have some sort of in house training program where they school their employees on proper serving procedures. As Chad just said, this woman probably left a set of prints on the rim of your glass (if she actually touched the rim) and therefore she violated the terms of her training and a manager needs to step in and either remind her not to mishandle the stemware (if she's new), retrain her, or fire her. If she touched the rim of your glass, she's touched other people's rims too and this wouldn't be the first time she's been the subject of a complaint. Keep in mind that non-Celiacs don't like drinking from dirty glasses either. Unfortunately you made the issue about your disease and shifted the focus from her negligence to the state of your own health (i.e. a genetic disorder that she has little control over) and the manager probably took her side (and probably even apologized to her for having to deal with such a "crazy" customer).

    Also? You had a gift certificate. And you mentioned that you'd only been there once before and hadn't been back because you'd been glutened. YES, people with gift certificates deserve to be treated just like any other paying customer, but when I bartended and someone with a gift certificate starting giving me grief, I always tried to be nice and resolve the situation as best as I could, but in the back of my mind I'd be thinking, "this person is only here to redeem a gift certificate. They don't eat out very often, they're not tipping and they're not coming back regardless of how good or bad the service is" and at some point I'd just cut my losses and try to get them out of there as soon as possible. In a perfect world the customer is always right no matter how they are paying, but waiters, bartenders and restaurant/bar managers are human beings and can only deal with so much before they disengage from what seems to be a no-win situation.

    actuly the reason we got the gift certificate is because we used to go they on a regular basis until i got sick and they cant offer me a safe eating enviroment is why we dont go to eat they but they do have a good bar which to enjoy a drink and some music we also know the poeple who play they every saturday night and we go to listen to them we also leave good tips i never leave without saying thank you to them . the only reason like i say we havent been for a while is because i only have been gluten free for 3 months and have been trying to get better. if u treat your customers with gift certs that way then i feel sorry for them, also she wasnt aware that it was a gift cert until we came to leave but let me tell you she didnt recieve the tip we would and usualy leave. she didnt get a penny.

    but i still have 50 dollars left to spend and i will be back there this weekend to use it up and i will be watching her if shes still there , it seems to me everytime we go in the bar the staff is new i have yet to go they and find the same bar staff. i told my husband who its his work friends who gave the certificate and do so each year that maybe they should pick another place next xmas.

    we go out usually every friday or saturday night and we have never had to complian about the service we recieve, we always get some very pleasent bar staff in fact we go back to one bar just because of this . i dont go out of my way to complian about anyone i have worked behind a bar too and know that it is a tyring job at times but also a fun job too.

  15. I agree, it's your right as a paying customer to be treated as such. I dont think that the situation was handeled properly and I would complain even higher up. Regardless of where she touched the glass, your complaint was not taken seriously and she was allowed to mock you by applying more lotion with a smug look on her face. Doesnt sound like a place that values their customers to me. However if you came accross angry and rude initially (I have no idea whether you were or weren't) you probably wouldnt get the response you were looking for. Its always best to be polite and in return you should be treated the same.

    hi rachel

    no i wasnt rude or angry when i put in the compliant we asked her nicly to change the drinks but she was all bent out of shape because she didnt want to wash her hands to do it, i spoke with her manager and again just explianed the situation to them that i didnt want my white wine smelling and tasting of coconut.that she should wash it off.

  16. Actually, handling drinks isn't just like handling food. I used to bartend and the sanitation issues are different than the ones in kitchens. First off, a bartender's hands are usually clean because he or she is often washing glasses -- and thus a lot of us have to apply hand cream frequently. Secondly, because bartenders are serving liquid, there isn't a lot of opportunity for the bartender to actually contaminate said liquid with his/her hands because you are only pouring from one vessel to the other...unlike a chef who is actually putting his hands in the food in order to prepare it. I mean, sure you theoretically could stick your hand into someone's martini in order to stir it, but generally -- unlike a kitchen -- bartenders are working behind a bar in front of an "audience" who will witness what they are doing so this rarely happens. Thirdly, a bartender generally doesn't touch the lip of a glass (or bottle). If you are pouring wine, you are generally holding the wine bottle at the base (not the neck) and if you are holding the glass while you pour, you should be holding it at the stem (far from the top where the customers' lips will come in contact with the glass). And that's how you should be holding it while you serve it to the customer. Furthermore, that's not just sanitation. It looks clumsy if you don't do it properly and bartenders generally like to look good while they do their thing -- your tips will reflect this.

    Believe me, I'm a very sympathetic Celiac, but this woman had every right to apply hand cream. What she's not allowed to do -- handcream or no -- is touch the part of your wine glass where your lips come into contact with the glass. If she did that -- and you might want to sit at the actual bar itself and watch your drinks being prepared to make sure everything is done properly -- then the best thing to do is politely say, "hey, I can smell your handcream on the glass, could you wipe this down for me? I'm sure you didn't touch the rim, but I just want to be sure!" They'll either wipe the cream off or (most likely) pour you another glass. Celiac doesn't even need to be brought into the situation. And you don't need to piss off the person who is serving you drinks. That is never a good idea.

    Acttuly for your information we where sat at the bar and she did handle the glass from the rim and not from the base as we where watching her whilst serving other people they drinks and you are wrong i did a sanitation course and have certificate to prove it and bartenders like cooks need to keep they hands clean like when you put a piece of lemon or lime and put it in a drink you need to do it with a cocktail stick not like her who just picked it up with her fingers. i dont want handcream flavored wine nor my husband rum and coke and have every right to complain plus she wasnt washing up the glassers either this is a very big establisment and they put them through a dishwasher not by hand, you might have worked in a small bar which this was included in you duties but here they have people to wash these things up nor do i expect to see the bar attendant too busy putting on her lipstick that she dosent notice pepole stood at the bar to be served this person was far more interested in looking the part than doing her job and if i want to piss her off i will and as for this isnt a celiac thing then why is it then we keep away from lotions and shampoos that contain gluten i dont want it, in my mouth i dont use it myself because its not safe nor do i want other people to use and contaminate me. on here poeple say that kissing a loved one whos lipstick or face cream as given them a reaction, isnt this the same its on the rim of the glass i put it to my mouth i get in it in there.

  17. hi all

    i just wanted to tell everyone of my very bad night out on saturday. first of all we have a gift certificate for a restaurant and bar but since i got glutened there we decided to use the gift cert in the bar instead so on saturday evening we called for a glass of wine and the girl served us and when i came to put the glass to my mouth i could smell coconut i said to my husband that it smelt like malibu anyway he picked up his drink and said the same , we had seen this girl rubbing her hands together so my husband called her over and asked have you been putting hand lotion on she was really pleased someone had asked her and was excited to tell us that it was coconut and lime. he said well thats really nice but we dont want it on our glassers as we can taste it, well she was really upset she was looking at us and you could see that she was looking at her hands and thinking i have just put this on and i dont want to wash it off so instead of doing just that she called somone else over to pour us some fresh drinks, i was angry as with lotion theirs wheat protine in them i went to the manager and told him that we wasnt happy that she should wash her hands that handling drinks is like handling food and for poeple like me who have food allergys cant stand to be sick from someone as carless as her. she pulled the girl out but instead of washing her hands she just applied even more with a smug look on her face that we where being laughed at. we left because i wasnt too happy and by the time i got home becuase i was upset it started me out into a very bad siezure episode which left me unresponsive a couple of times and scared my family. i dont remember it but its taken me three days to get over the episode, how can poeple be so irresposible , i will never go they again no matter we have money left to spend i will give it somone else, anyway i just wanted to vent my angry . thanks for reading liz

  18. hi i was wondering ? do u have to have been working and paying into ss before u can get disability or can anyone claim . the reason i ask is because am british have only worked for 2 yeas in this country got too sick to work and have been out of work since, if i was in my country i know i wouldnt have a problem getting it but am not sure on how it works here, plus i have been diagnosed with celiac and i also i seizures which am sure after having them as often as i do its now epilepsy brought on from lack of vitimins for over 2 years of been undiagnosed. i want to go back to work but worry about a seizure . and i sit at home wondering if i should except the fact i wont be able to work but i need the extra cash also . does anyone know thanks liz

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