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About jparsick84

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  1. I'm 26 and I live in Orlando. Has anyone tried dating after being diagnosed? I've heard horror stories about kissing a guy after he had a few beers and then being sick...I'm unsure how paranoid I need to be in that aspect. Any tips?

    Also, if anyone has any questions about eating out in the Orlando area, especially Disney, please don't hesitate to contact me! I've been living here for almost 2 years now, so I've had a good chance to scope out some favorite restaurants. :)

  2. How do you deal graciously with presents you can't eat? At my office, we all give each other little things to celebrate the holidays, and this year a co-worker in my department gave me the same tin of cookies as everyone else. I'm really torn on how to react to this - I know the holidays are a busy time but my department has been aware (and even supportive) of my celiac for the two years I've been working here. Should I just assume she forgot and that her gift was just part of a checklist (and therefore not really meaningful)? Should I believe that she was just trying to be equal in her gift-giving so no one would feel left out? Should I offer for her to have it back so she can give it to someone else? I don't know why I'm so bothered by this, but I'm really having trouble letting it go.

    Any suggestions on how to best deal with this situation would be welcome. My first instinct (because I'm an uber-practical person) is to offer it back to her so she can give it to someone else, but that might be misconstrued as insulting. (Then my small, mean side says "Well, it's insulting that she gave you a gift that she knows you can't enjoy!") Or am I just being ego-centric? I have been really lucky and have not had to deal with this in the almost 3 years of being diagnosed, but now it's happened, I'm not really sure how to deal with it.

    Thanks for any help you can give!

  3. I actually live in Orlando (have been here 8 months now) and here's what else I have found:

    If you're going to Celebration, the Columbia Restaurant has some choices. No separate menu, but I have the black bean soup, Columbia 1905 salad, and yellow rice with no problems at all. Most of the menu is "use your common sense" - I've had grilled steak and chicken there with no problems, but I always ask to make sure the grill is clean. It's a bit pricier than some of the places on here, but it's really good.

    Pizza Fusion is finally open on Sand Lake Road in Orlando. It's in the heart of the tourist area, and as previously said, kind of expensive, but it IS good.

    In Downtown Disney, the Rainforest Cafe is a great place to eat. When I explained to my waiter about my issues, he had one of the chefs come to my table to discuss my meal. I didn't know we were going beforehand so I didn't call ahead or anything, but the entire Disney corporation is great about food allergies.

    Any of our well-know food chains with gluten-free menus, of course (Outback, Chili's, etc).

    My personal favorite is a local Mexican place, located just off 417, on Orange Blossom Trail, called Azteca D'Oro. I've eaten there many times with no issues. They fry the chips in separate oil, the salsa is great, the food is yummy and filling, and the margaritas are amazing. This is a little farther from the touristy areas, but it's safe Mexican and very affordable.

  4. I don't know if this will help, but it works for my family:

    I call them about 2 weeks in advance of the meal, to find out what they will be making, and what ingredients (EVERY single one) they will be using for the food. If there are any items (like chicken broth) that will be questionable, I offer to either bring those items with me if needed, or do the research to find which brands are ok, and then call back/email with the list of safe brands.

    This is especially helplful with my grandmother who is set in her cooking ways - not only does the 2 weeks-in-advance call remind her that she will need to be extra careful the day she cooks, she also feels great about cooking an entire meal that I can eat. She does get annoyed sometimes when I double check everything once I'm there, but once I make sure everything is safe, my glowing compliments about how great all the food is cheers her right back up again.

    Hope this helps!

  5. ... no dining during busy times.

    This is unacceptable. I've never had a restaurant tell me this, and if they did, I would inform them that not only have they lost my business FOR LIFE, but I would also be discouraging all my friends and family from frequenting an establishment that could not make accomodations for me. I don't know, maybe that's selfish of me, but there are plenty of places now that offer gluten-free menus and can make those accomodations for me. I went out just this past Saturday night to the busiest upscale Mexican food place at dinnertime with friends and had no problems (or course, I chose to order foods that would naturally compliment my gluten-free diet - corn enchiladas, rather than flour shell tacos)

    Maybe it depends on the cuisine too - I wouldn't expect a sandwich place to make the same effort as a Mexican place due to the nature of the food served. You shouldn't have to eat dinner at 10 p.m. because the restaurant is being difficult.

  6. I think there is more to the whole dating thing than where to eat and expecting to be respected and appreciated.

    So you want to kiss your date? Does he/she have gluten residue in their mouth from their last drink/meal or their toothpaste or breath mints? Does their lotion contain gluten? What about lip balm/lipstick? I'm very sensitive to even trace amounts of gluten, so I have to know these things before I kiss someone.

    Even if you can find someone who has the exact same dietary requirements as you, and you actually like each other, not everyone on a gluten free diet is really knowledgeable about what has gluten in it and what doesn't. To further complicate the matter, not everyone on a gluten free diet wants to hear about how what they eat isn't actually gluten free. That kind of person is an unsuitable partner for me since they could gluten me. So add that to the equation.

    I'm holding out hope that someone will be a good match someday, but I'm also not getting my hopes up anymore when I meet someone new. Usually they bail before the first kiss. Nothing ruins the mood quite like asking to read someone's toothpaste label. :-/

    I think part of it is maturity level. People my age (mid-twenties) generally want to drink and party and live care-free. They tend to be selfish and more interested in instant gratification than long-term rewards. So dating me is beyond their capacity right now. It's not just age though, there are people a lot older than me who are just as immature as most of the people my age. So dating older isn't a great option for me, since in my limited experience, older people who want to date younger women tend to be a little immature.

    I'm glad that I haven't gotten involved with the people who can't deal with me having Celiac. They weren't the quality of company I want anyways. Celiac disease is my own litmus test/chastity belt. :D :-/

    All I can say is O-M-G, YES! This sounded so much like me I actually had to double check the poster to make sure it wasn't me!

    On the bright side, at least you're getting out there - every time I make plans with a guy, he bails before we even get together and then I never hear from him again. Talk about mega hits to your self-esteem! :/

  7. HI, I'm glad I found this post on perhaps starting an Orlando support group! I just moved here recently and am still trying to find the good, safe restaurants in town! (I had a favorite Mexican place in Tallahassee, Virginia, and Washington, DC, but not one in Orlando yet) Anyway, anyone interested can email me at "jparsick84@gmail.com" and maybe we can get a dinner group together or something :)

  8. I am going to have to keep a mixed kitchen because I don't want to be a burden to anyone else. My kids are too young to understand and I don't want to "cheat" my husband out of the foods he loves and is used to eating.

    You ARE NOT A BURDEN! You have a right to have a safe kitchen, just like everyone else in your household. I was told, right after diagnoses, that everyone in my house needed to be gluten-free for at least a month, so I could heal without all the CC that inherently goes along with a shared household - not only surfaces and toasters but also sponges, wooden utensils and shared condiments. And as far as your husband goes - what about all the foods YOU loved and YOU were used to eating??? I'm not saying that he has to be gluten-free as well, but a talk with him about your feelings ("It's really hard for me to watch you eating pizza in front of me, honey") might reveal that he doesn't mind having those foods elsewhere - someone else mentioned keeping the gluten foods outside, which is a great idea. And you might find that your kids like being gluten-free - and if it turns out they have the gene, it will be easier for them down the road if you have "prepped" them in terms of living gluten-free.

    I'm trying to save some time when food shopping by not having to read every label so I'm looking for any suggestions on what brands are gluten free?

    Sadly, with companies changing ingredients and facilities all the time, there is no way around this one. The list you ordered is only accurate at the time of publication, and as a newbie, you're going to have to read every label. Think of it as practice - spend the 2 hours now to be better able to quickly identify "bad" foods later.

    Wal-Mart brand items always have "Gluten-Free" in big bold letters at the bottom of their ingredient list if it's safe, and it also always mentions if it was produced in a shared facility.

    Good luck!

  9. Oh, and now I use Suave shampoos and conditioners, Victoria's Secret body washes, Crest toothpaste, Got2Be hair glue, Suave hairspray, Udderly Smooth Cow Cream, Lip Medix lip product, SoftSoap hand soap, Burt's Bees lip products, and Mitchum for Women deodorant.

    All of these products are safe for me, so they should be safe for you too. Just make sure you read the label. If it's too small for me to read, it's not worth my time! :)

  10. As a sufferer of severe DH, I can tell you it's safer to just go totally gluten-free. My head kept having these bumps that felt like mosquito bites, but in my hair, and I couldn't figure out what was causing it. Then I looked at my hair gel - "wheat gluten, oat protein, barley extract".

    It could be just that I'm sensitive to gluten stuff on my skin, but I agree with what has been said already - why risk that accidental glutening?

  11. I too get depressed when I'm glutenated. I remember last time it was really bad, I was lying on the couch watching "The Notebook" trying to tell myself that "cutting out cereal wasn't so bad, look at the characters in the movie and what they have to go through!" I was weepy all day, I couldn't even find the energy to make something to eat!

    It will pass. Stick to basic foods for a while to ensure no more accidental glutenings, and like someone else said, do some exercise. I also like the Walk Away the Pounds series because you can do it at home and make it as intense or as gentle as you need. And once you start out gentle, hopefully you'll feel better with the endorphins pumping through your body and feel more able to get back to your life.

    Also, if you can afford it, go see a psychiatrist. Even if you only get depressed with gluten (like me), it's good to see him/her to talk about your new lifestyle. It can help make the next episode less painful.

  12. The only symptoms I had before I was diagnosed was this awful itchy rash. It made chicken pox look like a walk in the park. So when I was glutenated, I would itch like mad all over. (This is DH, by the way, but I had it way worse than most people). So my only incentive not to cheat was this rash - I couldn't sleep for itching so much!

    Now that I've been gluten-free for a year, whenever I get the teenyest bit of gluten I DO get the big D. So once you fully pull yourself out of the wheat and gluten, you'll realize how many other symptoms you really did have (headaches, fatigue, sleeping 10+ hours a night and waking up tired, depression, etc).

    Just remember - if you want to feel 100% better, you have to go 100% gluten-free. Period.

    Good luck!

  13. The best way to figure out if it's something old or recent is to keep a food journal and stick to whole foods for a while. Fruits and veggies are inherently gluten-free, as are most plain meats. This will help you create a "safe list" of foods you can eat, and can help greatly when others are asking you "what can you eat?"

    For me, I can tell within 30 minutes if something had gluten, but I have mostly severe DH and hardly any GI symptoms.

    You might also want to avoid artificial sweeteners for a while, as they can be VERY hard on your stomach. I too couldn't figure out why I kept getting sick - I finally realized that my daily diet soda was the culprit, and since cutting it out, have felt much better.

    You have to be obsessed with your food, especially if you're still not feeling well. It's just one of the annoyances of this disease. But it will get easier, I promise. And when you finally start to feel better, it will totally be worth it!

  14. The best taco seasoning is the one you make yourself. Seriously - most packets have so much sodium and so many preservatives you lose some of the flavor.

    I generally use garlic powder, onion powder, cumin, curry powder, ground red pepper, chili powder...you can add anything you want! If you want it to taste more Indian than Mexican, go heavier on the curry and cumin. If you want to make it more Italian than Mexican, go heavier on the garlic and onion. And so on.

    I always keep a cabinet full of spices - you just never know when that new gluten-free dish is going to need some spice! :)

  15. It's true that men seem to have a harder time understanding CC than women. My mother and grandmother got it MONTHS before my father, and my grandfather STILL doesn't get it.

    The trick it to find an analogy that works for them. For example, my grandfather thinks that I can develop a tolerance to gluten, like people can do with poison (you know, a teeny bit each day to make the body immune to it). Since nearly every male in my family has diabetes, I told him it was like feeding a diabetic a spoonful of sugar each day - it won't do anything but make him sick. He nodded and I actually saw the light come on in his eyes! It was such a triumphant moment for me. :)

    You do have to be your own advocate, both with waiters and DBF. CC is the toughest thing for non-Celiacs to understand. (Because, let's face it, if a diabetic gets a plate that had a piece of cheesecake on it, they're not going to get sick like us).

    Some tips: For the time being, stick to restaurants that have gluten-free menus. They are generally more educated on gluten-free issues and when you tell your waiter you are ordering from the gluten-free menu they know to tell the chef to be super careful. When DBF sees you can be "normal", branch out to other restaurants that are inherently gluten-free, like Mexican and Thai.

    Or you could just forgo eating out and learn to cook together. You can make him a gluten-free meal, serve it, and when he tells you how good it was, you can say "HA! It was gluten-free!" :)

    Of course, if none of this works, you may want to think about finding a new boyfriend. You could always eat like he does, get sick, and then say "I told you so" but I really wouldn't recommend it.

    Good luck!

  16. I just finished a box of Kix last week and was fine. Of course, I could have just gotten a lucky box. Since I've heard that GM is planning to reformulate some of their cereals to make them safe for celiacs, I think I'll wait to buy another box of Kix until after this happens.

    This can happen with Frito Lay, as well - you go along with a few good bags of chips and then WHAM you get a bad one! I haven't yet figured out the way to always get a good bag, but as soon as I do, you can bet I'll be posting.

  17. ...my 13 year old celiac daughter is tired of alot of the gluten free foods and so wishes that she could just once have a regular pizza or McDonalds chicken strips, etc.

    You can fry your own chicken. I live right behind a fried chicken place, and let me tell you, when I step out of my apartment at lunchtime - the smell is maddening!

    I use Bob's Red Mill gluten-free All-Purpose Flour, (sprinkle in some pepper for taste), cut a chicken breast up into nugget-sized pieces, dip the pieces into a scrambled egg, then roll the pieces in the flour. I use olive oil to fry, just in my little omelette pan and it's pretty decent really - at least, decent enough to curb the craving! (Fried chicken is the #2 thing I miss the most - Cereal is #1. Cap'n Crunch, Lucky Charms, Honey Nut Cheerios...I ate 'em ALL! I never met a cereal I didn't like...<sigh>)

    As far as pizza, Dad's Gluten Free Pizza brand, found at http://www.glutenfreepizza.com) is the best crust I've come across. If I hadn't made it myself, I'm not sure that I would have known the difference! You have to order it, which is a pain for me (I live in Florida, and if I don't get the box right when it's delivered, they start to spoil in the heat) BUT they're really good and you can get two meals out of it. You can keep them frozen for up to 6 months.

    Tell her to hang in there! :)

  18. You guys made me realize too there probably is something I've over looked...I wonder, could it be my diet 7up? Could it be my mary kay night cream that I use as lip gloss? Could it be my ice tea? My cigarettes? My envelopes??? Could I also be lactose intolerant??

    Some envelopes do have gluten on them - I never take a chance and always use a wet paper towel to seal an envelope.

    The other thing could be your diet soda. I too was completely gluten-free (eating only whole, non-processed foods as proof), and I couldn't figure out what it was. I finally figured out it was artificial sweeteners, which would include your diet soda. Apparently it isn't that uncommon for Celiacs to also have trouble with artificial sweeteners, but it was still incredibly frustrating - being deprived of my afternoon diet soda, I now have a snack instead, which means more calories but no more D. I suppose that's a good trade off... ;)

  19. Im having serious thoughts of just giving up on this diet.

    Don't do it!!! You KNOW you can't do that, and we're here to support you!

    I know I can't imagine what it must be like living with other people and having to cook for them while learning about this, but I read in "The Celiac Bible" that there are 2 really good options for this situation - either make everyone else in the household go gluten-free with you (expensive, and some resentful feelings might pop up) or tell them all that you can't emotionally handle cooking for them right now, so they will have to take care of themselves. Of course, if you're kids are really young you may not be able to do this either, but if they are old enough, you can help them figure their meals out. If you must continue cooking for everyone, you could try substitutes and see if they notice the difference - instead of making regular spaghetti for the family and rice spaghetti for you, just make the rice pasta for everyone - by the time they put sauce, meatballs, and Parmesan cheese on it, they probably won't even notice the difference. And once the gluten-free meal is successful, you can take pride in announcing at the end of it that it was gluten-free!

    For the best gluten-free pizza I've ever had, go to www.dadsglutenfreepizza.com I couldn't really tell the difference b/w it and regular pizza. I tried Amy's rice crust one time, and I threw it out because it was so disgusting, so I know how you feel there.

    I'm also wondering if you're getting accidentally glutenated and that's why you feel lousy. Most soups have flour in them, so if you want to keep eating soup, you may have to start making your own. (Egg Drop soup is actually really easy to make and filling enough for me).

    If you're getting tired of reading labels, you can make a list of safe foods to take with you to the grocery store so all you have to do is check the list to see if it's safe. (Of course, you'll have to check the products periodically to make sure the formulas haven't changed).

    The thing that helped me the most when I would feel like this is to avoid the gluten-free versions of old foods altogether and just eat foods that were naturally gluten-free (meat, veggies, fruits, etc). This way I didn't feel like I was depriving myself, or that the new version tasted crappy. And after a while, once you lose the taste and texture of the gluten version, the gluten-free version doesn't taste so bad.

    Another thing that may help you is to seek professional help, if you can afford it. I know it sounds crazy to go to a psychiatrist for a food issue, but the fact is that you're loosing a way of life, and you need to allow yourself to grieve for it (all 5 stages). You can't reach Acceptance without going through Sadness and Anger first, you know? And they will just listen to you, which is sometimes all you need.

    Don't give up, and feel free to message me if you want some more tips. :(

  20. I was told by an ignorant doctor that DH doesn't mean Celiac.

    However, the brilliant dermatologist who diagnosed me (took one look at my skin and said "I think you have DH. Let's do a biopsy to find out!") told me that DH=Celiac. He might have just been saying this so I would accept the gluten-free lifestyle for life, but since eliminating gluten, wheat, barley, rye and iodine from my diet, my DH has all but gone away - therefore, I believe I have Celiac. I don't know if doctors tell DH patients that, but iodine also needs to be eliminated from the diet for those of us with DH. The iodine is the tricky one - it can lurk more in places than gluten, believe it or not! I actually bring my own non-iodized salt shaker with me when I go visiting family. Most of my accidental breakouts now are from iodine, not gluten.