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MJS

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  1. Thanks so much for all the replies!

    I was really interested to see that other people have had the same reactions as I have. I think I might stop drinking alcohol (as much as it pains me haha) because it's just not worth the suffering. I am positive that my drinks are gluten free (I make them myself, in my apartment), so this just might be the way I will have to go on.

    If there's a truly special occasion, I might just pop some Immodium and go for it.

    If anyone has any other suggestions/similar experiences, I'd still love to hear them.


  2. Every time I drink alcohol, be it just a couple glasses of wine or a more greedy portion, I seem to get sicker.

    When I first started drinking, this never happened. I was diagnosed with Celiac Disease about 4 years ago and have been on the gluten-free diet ever since. I should note that my reactions to everything overall seem to be getting worse (accidental CC, dairy make me feel much more awful these days than they did just a year ago.) Each time I drink alcohol, my body's response is more extreme.

    I'm in college, and I would like to be able to go out with my friends and have a good time. My response to alcohol is a tiny bit different than that to gluten. I get the same bloating, cramping, headache, stomach pain, and diarrhea as I do with gluten. However, my stools are a different consistency and less odorous after alcohol consumption (sorry for the gross details, but I really want to figure this out!) Last week, I drank on Saturday night and I did not start feeling normal again until Wednesday.

    I know there is no gluten in what I drink. I am very careful. Last week I had Bacardi rum and Cuervo tequila. A few weeks before that, I had white wine. The time before that, it was vodka. All of these are gluten-free, yet made me sick. It has gotten to the point where I am scared to drink, and it makes social events awkward.

    If anyone has had a similar experience, or has some idea of what's going on, I'd appreciate your input!


  3. Hey all,

    I just started college this fall. I go to Johns Hopkins and all freshmen are required to buy a (really expensive) meal plan. Since I am spending so much on it, I try to eat almost everything at the dining hall.

    However, I feel like I am getting a lot of cross contamination by eating there. They keep rice waffles and rice bread for me, but I have to use the same toaster as everyone else, as well as the same ingredients for my sandwiches (lunch meat, cheese, veggies, etc.). I know that the Boar's Head meat and cheeses are gluten-free. I try to only eat things that I know what's in them (fresh fruit, veggies, plain rice), but it would not be hard for stray crumbs or flower to make their way over.

    I just feel generally crappy a lot of the time.I get some similar bloating and stomach pains that I used to before my diagnosis, only not as intense.

    I also have never lived in a fully gluten-free home. My mother didn't really believe that even a little bit of gluten could make me sick, and so she never got me separate butter dishes, toaster, etc. But I did feel a lot better when I lived at home and cooked all my own food.

    What I want to know is, is there a blood test that I can get to measure my gluten levels? I want to know if what I am eating is making me sick, or if something else is going on.

    Do I need to see a doctor to get this figured out? Can I get the blood test without a doctor's visit? Last year I "graduated" from my pediatric gastroenterologist - they said that I only needed to come back if I had any complications. But that doctor is back home.

    Any help would be greatly appreciated!

    Maya


  4. hey marta,

    i have an aim but not msn or icq. i have been thinking about getting msn though, so i probably will soon.

    I have been to England, France, and Russia and might visit Germany for a week this summer.

    My mother pointed out the other day that since we don't live in a really large city, you might get a little bored. Gainesville is only about 120,000 people or something like that. but we are 2 hours from Orlando, 2.5 hours from Tampa, and 1.5 hours from jacksonville.

    My parents are still considering whether or not they would let me do the exchange. My email is maya918@gmail.com. If my parents decide they will let me do it, and if I don't have a job, I would love to do the exchange.

    Talk to you later

    Maya


  5. I was diagnosed when I was 14, so it wasn't hard for me to handle on my own.

    My sister, however, was younger. My parents talked to her teachers before the school year started and explained about the diet, and not to let anyone give her food. When they knew she was having a class party or something, we would bake gluten-free cookies or brownies the night before and give her some of those to take.

    I don't think other kids would intentionally slip your son gluten if they knew about his problem. Some of my best friends, who are 16 and 17 and know all about celiac, forget all the time and just hand me food. So I suggest you teach your son not to eat anything he doesn't get from home.

    Good luck!


  6. My mom is Indian and we go visit every couple of years.

    I've met other celiacs, but never other Indian ones! well, I'm 1/2 Indian, but still.

    I've gone to India once since I was diagnosed. Basically I avoided most types of bread. But some North Indians use bajra (I'm not sure what that is in English, or if I spelled it right. It's a flour that a lot of poor people in India use, so my nani thought it was funny that I was eating it). Or I've also had chapatis made of corn (I think that's a Panjabi thing). Both of those taste pretty good, but the textures aren't the best. Dosas are gluten free too, if I'm not mistaken.

    Last time I went to visit, my aunt searched everywhere in Delhi for gluten free foods, but pretty much found nothing. Luckily you can eat dhal and rice and vegetables. I would also check online. If the shipping prices aren't too bad, you can get virtually anything mailed straight to you door.

    Hope this helps!


  7. Hi Marta.

    I am 16 also and I live in Gainesville, Florida, US. I'm a celiac too.

    I've taken 3 years of Spanish in school and I am on my 4th. I really love learning Spanish.

    I might be interested in the exchange. But I won't know about my summer plans until around February. It depends on whether or not I get the job I'm applying for.

    I don't know if February is too late to plan, but if you don't find anyone before that, and if I'm available, I would love to do it.

    Maya


  8. I was diagnosed with celiac over a year ago. although i got much better, i never went back to feeling completely normal.

    I frequently get extremely bloated and have stomach pain whenever I haven't eaten for about 3 hours. Or, if I eat a lot, I still get the bloating and pain. I now eat very small portions for breakfast, lunch, and dinner, and about 3 large snacks/mini-meals a day. This only limits the pain a little, it's still pretty bad. And I'm not sure if the way I'm eating is healthy either - should I be eating 5 or 6 small meals a day?

    Is this a part of celiac disease, or should I be worried? My MD says that it's probably nothing, but to be safe I took a hydrogen breath test last week and the results came out normal. My next appointment isn't for a month and I was wondering if anyone experienced/knew of these symptoms and how to treat them.

    Thanks.


  9. It's funny, I was talking to my brother about this as he came to my city for the weekend, and he at first was shocked about the whole tooth brushing dilemma, but then covered it up by saying "At least it'll help you weed out the jerks"...which is true. Unfortunately, the non-jerks seem to be married. Do I have to have my cat brush his teeth before he licks me? Crap. :lol:

    P.S. I'm also the same way...very low maintenance and I feel like I'm inconveniencing everyone. I'm assuming desperation for the social scene will eventually force me to stop worrying about it.

    yeah i feel really bead whenever we're eating out and the waiter has to go back and forth to the kitchen asking questions 50 times.

    do people really ask guys to brush their teeth before kissing? i didn't know that that could make that much of a difference. my doctor has never mentioned it. (i'm glad though because discussing dating and kissing with him would be incredibly awkward)

    is it a huge deal if i just let it slide?


  10. It is sad that this poor woman got treated so badly. However, I don't think closing the clinic would help. Inner-city clinics are essential, in my opinion. They never receive enough funding, though, and this is what results.

    My brother worked with MSF (Doctors Without Borders) in the Republic of the Congo. He tells me about the horrors he faced. Although they just had to sit by and watch many people die, the fact that they were helping other patients made it worth the while.


  11. I was diagnosed last summer, and after starting the diet I immediately began gaining weight. It was strange because for the last two years before I was diagnosed, I had been losing weight steadily.

    All of a sudden, over a course of two months, I gained almost 20 pounds. It has been a year since the diagnosis, and I have only been able to lose 10 of the pounds.

    Did this happen to anyone else? What did you do?

    I have been eating healthy food and maintained a good excercise regimen. I wish my body would just go back to normal.


  12. I wasn't aware that I grind my teeth until I started getting terrible jaw pain. My dentist referred me to a facial pain center and I saw a doctor there. He told me that my grinding occurs when my body shifts from light to deep sleep, not because of stress.

    After trying every medicine possible, we decided to get a device. It wasn't cheap, $1200 (including follow-up visits). But my insurance paid 90% of it so it turned out okay.

    Then it only got a little better so we started physical therapy -sending heat waves into my jaw muscles with this weird machine. That helped a little

    So I guess those are some of the treatments you can expect if you visit a doctor. However, I wasn't healed completely, but the pain did improve.


  13. i'm sorry about the horses. it stinks to have something you really like ruined by medical problems.

    i forgot to add that i like to surf too. i live in FL so the waves aren't that great, they're usually around 3 ft but get a little better during storms and around hurricane season. i've been surfing since i was 12 and i love it. i can't think of a better feeling in the world than catching a really good wave.


  14. becca and uhmanduh:

    i find it easy to buy a lot of gluten-free food on the internet. the downside is that you mostly have to buy in bulk.

    but i've found some pretty good deals. this one is my favorite (sorry idk how to post links):

    http://www.amazon .com/gp/product/B000FGZJF...2124238-3024030

    it's a rice cereal that's not too sugary, and 6 boxes for about $17. that's better than you would get for regular gluten-containing cereals in grocery stores.

    just surf around for a while, you can find some great stuff. everyone in my family loves to eat my cereals even though they're not celiacs (i don't share, though. i'm greedy)

    anyway, hope this helps


  15. thanks. my parents are gonna wait until after school gets out to get her tested. hopefully she's not a celiac.

    yeah i think lacrosse is cool. i played pickup games with my cousins in arizona but i live in florida and there aren't any teams anywhere near where i live. we have city leagues for ultimate, though, and lots of my friends play on them. it's a great way to stay in shape.

    i really love running. does anyone here go to cross country camp? my teammates and i are looking for a good but affordable camp to attend over the summer.


  16. Hey Ben,

    I don't really skate much but I love snowboarding. I go every winter. I also just bought a wave board and it's really awesome. If you haven't tried one, you should. I'm big on mountain biking, I just started competing in races this spring. Do you bike at all?

    lizzydotcom- I like having adults comment on the board. They have good advice and know more about stuff. I find it helpful.


  17. yeah it sucks, and of course it's a big shock at first. the summer i was diagnosed, i gained over 9 pounds. my doctor attributed it to the fact that my intestines had actually started absorbing food, but i didn't tell him that i had found a recipe for gluten-free peanut butter cookies and i was sitting at home feeling sorry for myself and eating 10 cookies a day. i'm telling you about this so that you can avoid it!

    but after a while i got over it, started running again (i had stopped a few months earlier when i got really sick), and immediately started to feel better. hopefully you will feel better too. i only found this site about a week ago, but i'm already hooked. it's great.