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Pissed And Scared
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14 posts in this topic

hey wassup everybody...i'm 22 yrs old but i guess i could write in this section...= )

well i just found out 2 weeks ago that i have celiac disease...i've been tryin to do everything that i can, and learnin as much as i can to survive with this disease and new life stlye...everybody here at work are eatin food that somebody bought outside for them, and i can't even eat any of it...and that pisses me off

I came from the war in Iraq, fought there and survived after multiple times of gettin killed, but then i come home to a drunk driver crashin into my car, and a the findin out that i have celiac...WTF...i was better off fightin in Iraq then bein home...

how do you guys go out everyday with ppl and and still be able to socialize...can't drink at bars, and eat where u want...

plz help out a newbie and somebody who feels lost in life right now...

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Hi Eddie,

Celiac Disease is, obviously life altering; you don't really ever entirely fit in with situations including food and drink. Although you can make discussions w/ chefs/waiters discreet, you're never really entirely the same as you were before. There are gluten-free foods and gluten-free drinks, but you can never keep your lifestyle entirely the same or like you said, walk into a restaurant and eat what you want. Therefore, all you can do is try to adapt to this as well as you can; learn what restaurants are gluten-free or accomodating to celiacs (and there are gluten-free drinks) , learn a lot about the diet (which you mentioned that you're trying to do, and find a way to cope with the frustrations and restrictions that accompany the gluten-free diet.............the worst thing in the beginning is watching other people eat food that you can't have....etc.

The only way to feel better about this is to see the options you do have. All my life I've been a picky eater...hardly ever tried anything new. I've found so many delicious gluten-free foods that even if I didn't have celiac disease, I'd still want to eat them. The beginning stages of the diet are the worst; I remember trying my first gluten-free bread...it was disgusting, hard, and crumbly. The beginning is most discouraging but once you learn about which brands and which foods are tasty, it gets a lot easier. Coming to this board was the best thing you could do.....I've learned so much and avoided trial and error to find great foods. I'm not sure specifically what advice you're looking for, but if I see any more postings from you with specific questions, I'll tell you what I know. It always seems grim in the beginning, but it gets better once you know what you can eat.

Thank you for serving your country, and obviously, I'm sorry to hear about your incident with the drunk driver.

Good luck on the gluten-free diet,

celiac3270

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Hi. It really takes awhile to gt used to this. I have been at it for over a year and am still learning new things everyday. Lately, my eyes have been itchy and I found out there is gluten in it so now I need to find glutenfree eyeliner! Gluten is everywhere and you'll learn to deal with it. You can still drink, just go for the "girly" ones, vodka is fine. Eventually it will be like you've always lived this way. It's very hard to deal with at first and I go through periods of feeling like poop and being upset about having to not eat with friends and not be normal. A therapist helped me a lot. Hmmm, I don't know what else to tell you. Though, things should be going up for you now that you're home and have the diagnoses. You should start feeling better, depending how bad you felt. There really is a lot to eat if you're resourceful, creative, and pay attention. You can also find helpful people out ther who are willing and acceptin to your problem. Then again you'll find people who don't take this disease seriously. Well, I don't think I offered anything helpful but just know that things get better, they do!

Kristina

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Hey. My name is Jessie and i'm fifteen years old. I found out about a year ago that i have celiac. i was told by everyone that i was lucky becuz normally i didnt eat a lot of bread, but it was annoying because i ate pasta like 24/7. after my mental breakdown and a week or two of crying i started to get interested in what was going on, i found some great mail order bakeries and there are some restauraunts out there that are either compliant to the gluent free way of eating or have set things on their menu that can be eaten. i admit its hard watching people pig out on dunkin doghnuts or going out to eat with friends, but it does get easier.

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i don't even remember when I was diagnosed @ 20 months. I guess people say I'm Lucky cause i don't get cravings but you will get used to the diet. there is GREAT food out there. Think about what you can have, not what you can't have. Try using a restaruant card when you go out to dinner with your friends. if you need someone to talk to you can always e-mail me

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Back, I checked the board for alcoholic beverages since that seems to upset you, as well: check the products/shipping/medications section on the board; they have a section on gluten-free beer: I took some info. from there to post here, but would advise you to view the entire thread:

"Gluten Free Honey Lager"

The beer features a bright golden color and has an alcohol content of around 5.5%. To make a beer gluten-free, no barley or wheat is used. It includes honey notes and a touch of molasses in the flavor. Only "noble" hops are used for flavor and aroma. Brewed in dedicated fermenters using kosher yeast. We are

in the process of pricing and shipping costs. If you have any other questions, please feel free to contact us directly, GNSRSES@aol.com. You may contact us directly for shipping 1-845-369-7827.

Ramapo Valley Brewery

http://www.ramapovalleybrewery.com

We are located at 122 Orange Ave. Suffern, NY 10901

The beer is $30 plus shipping for a case of 24 12 oz bottles. They are also willing to ship out a six pack.

Chris in NY"

I found this on another site....and, yes, the shipping is outragous.

http://www.bardsbeer.com/

--"While we are a U.S. company..." I think they are in the NorthEast....

http://www.bardsbeer.com/newsletter/v5.shtml

This explains the long hold up in their beer production. (I've been watching their site for 2 years now...)

I wish them the best of luck!! (creating the recipe is the hardest part!  )

Dear Ms. Johnson:

Thank you for your recent email message. We appreciate you taking time to

contact us, as we value comments from consumers. Heineken USA has been

informed by our parent company, Heineken NV, that our beer does not contain

wheat or other grain adjuncts. Our recipe contains only barley, hops,

yeast and water. Although barley has a source of gluten, the gluten

contents of our products is lower than the gluten free level.

Consequently, Amstel Light is considered gluten free.

Thank you for your interest in Heineken USA.

Kind Regards,

Kristen

Heineken USA

People there are also debating whether or not "Amstel Light" is gluten-free. Obviously, being 13, I have no personal opinions on these beers....it's always encouraging to find replacements to the things you miss most. Good luck.

-celiac3270

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hey everybody thankx for all ur help and kind words...i know i'm not the only one with celiac disease, but like all you know itz always the hardest in the beginning....i admire how all of u are gettin through and have gotten through this ordeal...but i also know that if we all help each other out all the time, things will get easier...for all of us!!!

thankx again

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You will find it much easier soon. Just make it through the first couple of months and it should get better/

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hey everybody thankx for all ur help and kind words...i know i'm not the only one with celiac disease, but like all you know itz always the hardest in the beginning....i admire how all of u are gettin through and have gotten through this ordeal...but i also know that if we all help each other out all the time, things will get easier...for all of us!!!

thankx again

Hi Eddie,

I've typed out this post and it's been erased twice! :angry: I'm so infuriated!!! I twice wrote a paragraph about how nobody really understands celiac disease except those who have it so it's nice to be able to talk (or write) to people who understand (or come close to understanding) what you're going through with Celiac....etc. I'm not going to get that detailed again, or my post might wipe out again! :unsure:

I know you didn't ask anymore questions but here are some food suggestions to begin. The hardest part (besides dealing w/symptoms if you have them) is sorting through the junky (a slight euphemism :) ) gluten-free products and finding the ones that taste terriffic. Many taste horrible so it's hard to find the really good ones, but easy if you have help from others. Here are some suggestions to get you started on the diet:

- Store-bought Cookies: try Pamela's Products -- the BEST cookies. The lemon shortbread are decent, but some people find them too strong a lemony taste. However, try the Dark Chocolate Chocolate Chunk Cookies. They are AMAZING!!! Even including regular cookies, they are the best store-bought I've ever had.

- Homemade Cookies: if you have 15 minutes to spare, make peanut butter cookies. Very good...even my aunt who hates PB liked them. Preparation time is about five minutes and the recipe calls for 10 min. baking -- it might take 15. All you need is 2 cups of PB (Skippy or Jif), 2 cups of sugar, and 1 egg (this is also good because there aren't any weird gluten-free flours and stuff...where do you buy those things, anyway? I don't like to cook, and I surely don't like to cook something that requires six different types of flour...it's ridiculous and I like simplicity if I am even going to bother cooking something...I don't mind making basic things, but now 6-flour-cookies that take three hours to make and three minutes to eat... :P ).

- Fruits/Vegetables/Meat: I eat so much more fruit now...apples, bannanas, strawberries, blueberries, canned mandarine oranges, canned peaches, etc. There are, of course, meats: chicken, steak, pork, hamburgers, etc....no fresh meat is excluded...but I often forget about fish, which are, too, gluten-free.

- Bread: People will say Knikinick or however it's spelled is great, but I've found Ener-G to be a bread that tastes astoundingly similar to regular gluten-filled white bread...that's what I use...you make your pick...go with me or the majority! :)

- Pizza: probably thought you'd never have that again, right? Get Chebe (you can only get it online), but buy the bread mix, not the pizza crust (the bread mix turns out better). Follow the instructions, mush it out into a round "thing", bake as instructed, and then add sauce (Classico is good), and gluten-free cheese. It's terriffic. By the way, you can get the Chebe at http://www.chebe.com. Try it...the shipping is free and once you realize that you like it, you can buy it in bulk and get discounts. Please!!!! If you take ANY OF MY ADVICE FROM THIS POST....TRY THE CHEBE!!!

- Miscellaneous: Raisins, Quaker Rice Cakes, most soft drinks are gluten-free including all kinds (diet, caffeine free, etc.) of Coke, Sprite, Sunkist, Pepsi, etc. As long as you stick with the brand-name companies (not the Supermarket Colas and be careful with Root Beers). There are many gluten-free candies...I actually made a post under the "Teenagers Only Section" for gluten-free candies...check there for the complete list that Gf4Life provided...actually, I'll copy it below:

Hi celiac3270,

I have a list of mainstream gluten-free and milk free candies that I use when shopping for candy for my kids. I got it from the Gluten-free Casein-free Diet Support Group for Autistic kids and they are very strick when it comes to putting products in their booklet each year. I know that Dextrin is one of their ingredients that is avoided, so these should be safe. Still read all the labels, since manufacturers change their formulas far too often:

Nestle: Sweet Tarts, Spree Chewy Candy, Regular Spree Candy

Farley gummy bears

Willy Wonka: Gobstoppers, Bottle Caps, Pixy Stix, Nerds, Runts

Mike & Ike: Zours, Jelly Beans, Hot Tamales

Starburst Fruit Chews (NOT Starburst fruit twists!)

Necco: Necco Wafers, Sweethearts, Conversation hearts (Valentines), Necco Candy Eggs (Easter), Candy Stix, Talking Pumpkins (Halloween), Peach Blossoms (Christmas), Necco Ultramints, Canada Mint & Wintergreen Losenges

Rock Candy (made from pure sugar)

Ce De Candies: Kidz Rings, Candy Fruits, Candy Lipsticks, Smarties

Mars Inc: Skittles, Jelly Beans

Sunkist: Fruit Jems, Jelly Beans, Orange and Cream chews, Super Sour Stars

Sorbee International: Lollypops

Jolly Rancher: Hard Candies, Jelly Beans

Jelly Belly: All flavors of Jelly Beans EXCEPT: Cafe Latte, Buttered Toast, Caramel Corn, Buttered Popcorn, Chocolate Cherry Cake, Chocolate Pudding, Strawberry Cheesecake

This should give you a lot more options and they are all available pretty much everywhere. I can also put together a list of others that you might only find online or in healthfood stores if you would like. Just let me know.

As for chocolate, I found that the Scharfen Berger chocolate bars are very yummy. They are gluten and dairy free by ingredients. The small bars are wrapped in a different facility where they also wrap other chocolates that do contain milk, so as a precaution they put a milk warning on the label. I am very sensitive to dairy reactions and have never had a reaction to these bars. They are a bit pricey and not available everywhere (I got mine at Whole Foods) but they are very nice to have when you are craving chocolate. There are also a few kinds of baking chocolate chips that are gluten and dairy free.

God bless,

Mariann

Chips: most things by Frito Lays (not Doritos), you can have: Lays Potato Chips, Wavy Lays Potato Chips, Cheetos, Fritos, etc. You can get a complete list at http://www.fritolay.com/nutrition/glutefree.shtml:

FritoLays Gluten-Free Products:

Last updated August 28, 2003

BAKED DORITOS

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hey eddie-

just wanted to add that I noticed your post. I am 23, and jsut got diagnosed at new years. I like the teen section though... less fussing about sick children. I just got back from gaurd school, learning to be a fire fighter. I am a BLM ranger, so fire is not really my job but they trained me anyhow. Anyhow, we camped out one night, and everyone else got mashed potatoes and porkchops and cheese cake and corn and all sorts of good stuff. I went over it with the caterers and the corn was the only safe thing. so I had corn and my power-bar thing and an apple for dinner. It was hard.

Did you know that you are no longer eligable to be in the military? I don't know if that is good or bad news for you.

anyhow, good luck. All I can say is, it gets easiear and easier. for me it is not unpleasant anymore at all, justmore complicated.

Lib

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Did you know that you are no longer eligable to be in the military? I don't know if that is good or bad news for you.

Good point...true.....I knew about that, but had forgotten about it......technically Celiac is a "disability" so therefore, we aren't allowed in the military.

anyhow, good luck. All I can say is, it gets easiear and easier. for me it is not unpleasant anymore at all, justmore complicated.

It does get much easier...you start to learn which ingredients are good or bad, you learn which brands of foods taste terriffic and which are horrible, symptoms lessen (if you had them at the start), and in my case, anyway, I have a list in my head of which foods I can eat, and in many cases I don't need to read labels to know something is okay...although reading them anyway wouldn't be a bad idea.

-celiac3270

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celiac3270 i thank you soo much for your help and takin your time to make someone feel better...i also had a colonoscopy and biopsy yesterday, they just keep tellin me more things...stomach ulcer, hernia, and hemrroids....i'm only 22!!!

oh well just gotta get through with all this one step at a time...= )

thankx again

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No problem....it's really nice to get quick answers to your questions...especially in beginning. It's also helpful to post on the board cause I learn so many new things that I can then use myself or pass along to those new to the board. Thanks for the compliments. :)

-celiac3270

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Hey Eddie......Im Liz 20 years old also diagnosed only a short time ago (week and ahalf) i feel your anger.......I feel like this "disease" is ridiculous and impractical......the world hardly seems to accomodate for this.....feel free to IM me sometime LLzard10 and we can piss and moan together!

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