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  1. I was able to get prednisone from my doctor yesterday but so far no difference. It's little blisters all over my hands that looks like poison ivy, but there's no way I could have poison ivy as I've been indoors with a sunburn for a week from the beach and I live in a big city where I don't come across nature- and certainly not poison ivy- often. Less heat is being generated now due to the prednisone I think, but it still burns and itches. The only thing that helps is aloe and I have to spray that on every 10 minutes. The swelling is also down except for in the joints of my hands. The blisters are all about the same size- there are not that are bigger than the ball on a ball point pen.

    I also get hives and large splotchy blots frequently that my doctor has no idea where they come from though. They're not particularly present now.

    What kind of a rash is it? Is it small little bumps like classic uticaria/hives? Or are they larger splotchy spots? Is there swelling in the areas you are breaking out? You said it burns, is there a lot of heat in the generating in the breakout areas, and are they painful?

    It might be worth going to the ER, they might give you prednisone or depending on the severity of it an epinephrine shot.

  2. Anyone have any luck? I'm leaving tomorrow on a 32 hour train ride (each way!) from Boston to Nebraska, and I'm kind of scared about the food issue. I don't have room to pack any food except for some carrot sticks. I should be able to find things at the restaurants for my stops (Rochester, NY and Chicago) but in between Chicago and Lincoln it's 12 hours and I'm going to need to eat something in that time! I haven't eaten in the dining car before but I do remember that the only thing gluten free that I noticed in the snack car before was a cheese plate with individually wrapped crackers- but I'm allergic to dairy so that's a no go. Any help?

  3. Thanks for everyone's advice!

    It actually looks exactly like poison ivy which I would have assumed it was if there wasn't any possible way that I could have an ivy reaction. I've had a severe sunburn for the past week before the rash broke out and so I've stayed inside and relaxed (no work because my internship is over for the summer). I literally did not go outside for a few days and I did not come in contact with any unwashed clothes that could have come in contact with the oil from poison ivy.

    I was able to track down my allergist and told him what it looked like over the phone, including my fears of celiac or just a general gluten issue. He said that he would support me being more stringent on a gluten free diet but that since I don't really have any GI issues, that it probably wasn't it. I'm on a 6 day round of methylprednisolone and he said to call on Thursday and if it hasn't cleared up at all, we'll try something else on top of it. Oy. My hands have calmed down now a bit because of a cool saline compress, but my back is getting twingy >.<

    Also- is grain related heartburn an issue with celiac? I didn't think about it until as soon as I hung up the phone, but before I began cutting out glutens, I would get horrible heartburn to the extent that an 18 year old shouldn't. :P I haven't had it in about 3 months since I cut out simple grains and then more recently gluten. Ditto with the kind of burps that just won't come out. I never burp but I used to get the gas buildup for hours that wouldn't go away. I wrote it down so that at my next appointment with the allergist, I'll remember to bring it up. Hopefully, this horrible rash will be gone by then!

  4. So, I've suspected Celiac for awhile and had previously cut gluten out of my diet. I currently have a DH outbreak on my hands so bad that I've been crying for the past few hours (it burns and itches beyond anything I've ever had before) and I can't bend my fingers or put my hand into a ball. However, because health insurance in this country is horrible, I can't go to urgent care because that's not covered by insurance and ER could take hours which I don't have (I'm going out of town tomorrow morning for 2 weeks and still have a ton of things to do like laundry and pack) and is still $100. I just don't know what to do. Also, I've heard that DH isn't particularly treatable so I don't know if they could even do anything for me. I'm on allegra and zyrtec every day and my hands are covered with aloe, lanacane, and cortizone- but none of that has worked.

    I can't hold a phone so my mom is trying to get me into my allergist's office, but he doesn't work Mondays and they're short staffed so they don't know when or if they can get me in.

    I know the only cure is to not eat gluten, but I've fasted for the past 2 days just so I would be SURE not to ingest anything that could aggravate it- and it's still only gotten worse. None of my shampoos or anything have gluten in them.

    I really just don't know what to do and I'm freaking out, and I'm sure the stress isn't helping. However, I wasn't stressed out AT ALL when the rash started. I'm all alone too because I'm away from home for the summer and school hasn't started so none of my friends are here yet.

  5. Do you think it's worth going to the hospital for? Like... I'm in for a 32 hour train ride on Tuesday that cannot be cancelled or postponed and it HURTS just to type this because my fingertips are covered and it's only getting worse. My doctor is only at his office where I can get to on Tuesdays so I won't be able to see him and there's an urgent care facility equipped to deal with non-emergencies like this steps from my apartment. I just want some relief from the itching and burning!

  6. I wasn't gluten free last year at school but I will be this year and have already contacted the nutritionist. Supposedly, she's a total ditz but she has done very well getting modifications with people with food issues. And she better, because since I live on campus, I have to pay something like 3K for a meal plan and I don't have money to go off campus to buy food and let that money go to waste.

    I'm a little apprehensive because I am gluten and dairy free, vegan... except for fish, and follow South Beach diet strictly and that's not something I'm giving up. Hopefully they'll be able to accommodate. At least we have 2 a la carte cafeterias so I can avoid the all you can eat place where cross contamination scares the bejesus out of me.

  7. That's a great idea. I'm meeting with my school nutritionist straight off because I have gluten sensitivity (haven't been Dxed celiac, but I have DH so it will happen soon), allergic to dairy, and am also following South Beach Diet because those issues have made me blow up in terms of weight and I need to lose at least 70 pounds. Yeesh. My school is very good about some dietary needs- specifically vegetarian, vegan, Kosher, and Halal needs, but is still struggling with other areas- especially since many of the cafeteria workers are not too aware of dietary issues.

  8. So, I'm pretty positive that what I have is DH. I'm currently going through a horrible breakout and in researching it, I've come to believe that the little unseeable bumps on my scalp might be related as well. I have on and off gotten the bumps on my fingers (and similar bumps on my legs, but not as often and different looking) but right now is the first time that it has taken over my fingers and one of my palms and wrist to the point where it hurts to ball my fist. Even worse- I'm going on a 2 week vacation tomorrow and directly move into my dorm room the day after I come back! So no way to get to a doctor any time soon about it. I've been relatively gluten free for awhile- not because I was diagnosed with celiac disease but because I was told that even people not on the gluten sensitivity spectrum benefit from a gluten free diet. I just haven't been strict about it. I've dropped all gluten products from my diet since this outbreak 3 days ago (and checked all my cosmetics and shampoos) but it hasn't eased up yet.

    However, for the past year I've had horrendous burning rashes covering my body until I managed to get them somewhat under control with allegra and zyrtec, both of which I have to take every day. I know I have a milk allergy which we thought was causing them, but cutting dairy out of my diet hasn't changed anything. My doctor thinks now that that rash might be due to something else as my skin and blood tests have been inconclusive (even saying that I was not allergic to dairy although there is no doubt that I am!). I don't know if I was tested for celiac but my doctor did call with my latest results for a blood test and said that something was off- I don't remember the name of the test but I didn't recognize it. However, he said it wasn't enough of an issue to worry until my next appointment in 2 months. Just wondering if anyone had other rashes or skin reactions other than DH in conjunction with celiac disease?