fisharefriendsnotfood

Could you tell me where you got this, so I can order one as well?  thanx!

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I got mine through the Canadian Celiac Assosiation, of which I am a member.

The New Celiac Pocket Dictionary just arrived in the mail today from the Canadian Celiac Assosiation. I'm very excited because it has EVERYTHING in it, what it is, and whether or not it's allowed. It's small so we can just carry it around! If anyone has questions about what's allowed, post here and I'll post the answer. I have my handy-dandy pocket dictionary here lol.

-Jackie

You obviously have a very caring mother who has also brought you up right.

Hope you have a great weekend!

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Thank you.

Thanks for all your kind thoughts. I appreciate them!

-Jackie

This happened a while ago, but I have to say it:

I was with friends, and they were all eating cake, etc. I was eating a gluten-free brownie and this girl asks to try it. I give her a taste, and she puts in in her mouth, SPITS IT OUT, and goes, "Eeeeeeeeewwwwwww! That's so gross, how do you eat that? It tastes like cardboard!"

I was very hurt by this, especially since my mother made me the gluten-free brownies. I thought they tasted good, but evidently I'm missing something. I've been gluten-free since I was two, so I don't remember the taste of "regular food."

Also, I hate when people say, "Oh, I think I'd die if I couldn't eat wheat."

Don't make it harder for me.

Sorry,

-Jackie

Hi, I'm Jackie and I'm fourteen years old. I'm a bit younger than most people here, but I like it. It's pretty easy to figure out, don't worry.

-Jackie

There is nothing at all in my cafeteria that is gluten-free, and if I'm still hungry after I eat my packed lunch there's nothing except chips for me to get. It's all chicken fingers, fries, pasta, soup... they do have little salads but most have croutons so I'm not going to chance it.

Oh, how the world over uses gluten... (Sorry that was just a little mini-vent.)

Also, on a different note, how do I get people (and doctors) to know about Celiac? I've thought about making little cards/brochures and putting them in my doctor's office. Good idea? Not a good idea?

Thanks!

-Jackie

How nice!

Since 1993 - I was two years old.

I was diagnosed with Celiac more than 12 years ago, when I was almost two years old. I don't remember the change in my diet, and don't remember what gluten food tastes like, so that's probably why I don't really have much trouble with my diet. The last gluten food I have eaten was 12 years ago; my second birthday cake. When I go over to family friends' houses, most of the time they will cook me something like plain chicken or fish and they'll usually have salad, and ahead of time I'll ask them to put the croutons and dressing on the side. And then I take my food first, so if the other gluten things up, I've already taken. Then, my neighbours, who are very nice people but are "Well, you can still have a little bit, right?" people. So when I go to their house, I just bring my own food. I explain it and they're not offended.

Last year and the year before, when I was in grades 7 and 8, I went to no less than at least 40 bar/bat mitzvah parties. Of my close friends, I asked them to ask the caterers to prepare something I could have and explained it, etc. Of the parties of kids I didn't know as well, I ate dinner beforehand and brought along one of those breakfast bars if I got hungry, and I admit, it did take willpower to ignore all those hours d'odorves (sp?) and desserts, but never once did I give in. Glad I didn't! All my friends would be eating greasy chicken fingers and fries and ice cream and fancy little cakes but I would sit there will a sprite. Sometimes people would ask me why I wasn't eating. If I didn't know them at all, I would say I wasn't hungry. If I did, I would tell them I had a wheat allergy. Hey, they're probably going to go dance or talk or whatever 10 seconds later.

I have never once EVER cheated on my diet. To me, It's unthinkable. Why I would want to do that damage to my body, I don't know. All I know is that those pounds my friends gained from party food, I sure didn't. Maybe I even lost some.

The point is, I went out for dinner and parties, and I still do, and my diet never restricts me. I go on camping trips will my Girl Guide unit and bring my own food. It's hard, but I do it because it's worth it and I love camping.

WHEN IN DOUBT, GO WITHOUT!

-Jackie

Well, I've been gluten-free since I was two years old so I don't even know what gluten and "regular" food tastes like. I guess that's good because I don't get cravings for gluten food.

But, I would try:

1) A big, fat doughy bagel like the ones that my family eats every weekend that smell SOOOO GOOD

2) Mr. Noodles Soup

3) A real hamburger

Just because I'm curious about what these things taste like.

-Jackie

Today I went to a friend's birthday party and when I told them about Celiac when they saw I wasn't eating pizza, one asked if I could have whole wheat bread.

WHOLE WHEAT!!!

Oh my goodness. But this isn't very fair, since she isn't the smartest.

-Jackie

I buy a couple of bags *for variety* and "trade" with my son for the gluten-free version.  Some of it is traded with his brother and sister.  They'll give him a snickers for a kit Kat.....  You should monitor the trading amongst children or the older *wiser* kids will walk all over the younger celiac like China over the U.S. 

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That's what I do with my sister. She's allergic to peanuts and I'm gluten-free, so we trade, let's say, she gives me an Oh Henry and I give her Smarties. It works well!

Hello everybody!!   What's up?

The first time I was glutened was at the Cheesecake Factory in San Francisco.  I talked to the manager for about 15 minutes.  He supposedly checked all of the ingredients in the corn tortillas, sauces, etc. that I was getting in my corn tortilla, chicken & vegetable meal.  But, about 30 minutes after we left the restaurant, I turned to my sweet boyfriend and said, "I need a bathroom!  NOW!"  Ack  

   

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I have found that the Cheesecake Factory in very unreliable and unknowledgeable in the gluten area. My family loves that place though so whenever we go to the States we go there, and I just order a salad, and there it's basically a bunch of lettuce with tomatoes and parmesan cheese because they top all their normal "salads" with either crunchy noodles or some kind of funky chicken. There's NOTHING there I can have that's on the normal menu except for an omlette... ew. Omlettes make me feel sick for some reason.

Well, I'm sorry to hear of your glutenings! I hope you feel better!

Congratulations!

Let me share with you an experience I had.

At sleepover camp, I had my gluten-free macaroni when everyone else had the regular one. Here's the transcript:

Girl: Why do you have different food? (Looks at me like I have four heads.)

Me: Um, I can't eat the regular kind. You see, I have lots of allergies. (No sense in getting into it, I hardly even know her.)

Girl: To what?

Me: Wheat and gluten.

Girl: Well, then why can't you have the macaroni?

Me: Uh, WHAT DO YOU THINK MACARONI IS MADE OF???

Girl: Macaroni has wheat? Really?

Me: *Mouth opens in shock from extreme stupidity of this girl* Yes!

There you go.

-Jackie

whoops, double post.

I can't believe people would be so mean! I had an experience where, at my sleepover camp, the snack that day was fudgesicles. Fudgesicles aren't gluten-free, so I asked the guy in charge of snack that day if I could have a popsicle from the box the brought for lactose intolerant people, because I could have that kind. I say, "Could I have a lactose popsicle please? I'm allergic to fudgesicles." And he goes, "I don't think you're telling the truth." And I say, "Of course I am! Why would I want a popsicle when clearly fudgesicles taste a whole lot better?" Finally after bugging him for a while he gave me one.

I mean seriously! These people just are so lucky that they don't understand.

-Jackie

I have to second what Morrigan said. I cannot imagine having had this ten years ago. There was so much less awareness (which is really frightening!) and I would assume probably nothing was labeled gluten-free. Also, did this board, which is the source of SO MUCH support and information, exist? Thank God it does now!

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I was diagnosed twelve years ago, when I was two years old. There was hardly anything gluten-free; no bagels, only one or two types of cookies, one type of bread, etc. And we had to go to weird out-of-the-way health food stores to get them. I am so lucky that I live in Toronto and we have the Hospital for Sick Children that is very involved in Celiac Disease. And this board certainly did not exist; commercial internet was just starting up then!

And there was basically no awareness.

Yup!

-Jackie

Thanks everyone! I will for sure give kids words to use like, "No thank you, I can't eat that or I will get very sick." Or something. Simple and effective. has anyone ever seen the book, "No Nuts for Me!"? My sister read it because she's allergic to nuts, and that's what the book is about. Kids allergic to nuts. It's a short kiddie book.

-Jackie

Hi Jackie,

I sounds like you have a great sense of humor and it is nice when we can laugh at this crazy disease. Thanks for sharing!!

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Hahaha! Thanks. I do have a sense of humour towards Celiac; I think it's the only way to go. Either that or stay in your house all day mumbling about your misfortune. And no sense in that! Go out and LIVE!!

-Jackie

Some foods...just a list I always post for newbies...maybe you can get something out of it....

- 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.

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PAMELA'S COOKIES ARE NOT GLUTEN FREE!!!!

I read that in a Celiac Newsletter.

-Jackie

I just thought of something I've been doing for NINE YEARS and just now thought of how funny it is.

Every year, twice a year, I sell Girl Guide cookies (yes, I'm a Girl Guide, AND 14 years old, I know, it's weird, don't make fun of me) because, basically, I have to and everyone I know loves them. Whenever I go selling them to friends or going door-to-door, people ask, "Well, are they good?" And then I go, "Um, I don't really know, I've never tried them..." Because I've had celiac disease all my life, even when I was a little Spark at 5 years old, I'd never tried them! How funny is that?

Wow. Sorry, just had to let a little humour out.

-Jackie

I LOVE writing, and I thought, why don't I write a children's book that explains celiac disease? I don't think I'm "medically smart" enough to write one for adults. Then I saw the post that was encouraging celiac3270 to write a teen celiac disease book. I know an author with published books, who can certainly help me get this published. If anyone has anything they'd like to see in a children's celiac disease book that explains what celiac disease is, how it effects kids socially and stuff all explained in very simple words, please tell me because I'll getting to work on it today!

Also, celiac3270, if you are actually interested in writing one, tell me and I'll see what I can do, because the author I know would be happy to help. (I'm not putting his/her name up here because I don't think he/she would want that.)

Thank you!

-Jackie

Thanks everyone for all the great replies!

My sister had the blood test when she was really little, but it came back negative. I thought that meant she doesn't have it; she could have it even if it came back negative???

I asked my dad about it yesterday but he said maybe someone had it, like a great-grandparent or something.

Thank you!!!!!!!!!!

-Jackie

There is NO ONE in my whole family that knows they have celiac disease. I found out it was a genetic disease a few weeks ago, and was like, then how do I have it? I suspect it's from my dad's side of the family, because my aunt has stomach problems but has never been tested for celiac disease. I really think she has it though.

And then, my uncle on my mom's side is "allergic to wheat". I don't think he's been formally tested to a wheat allergy, it just "bothers him". He's not even wheat-free though; we had my family over for a family member's birthday and he ate the white birthday cake, which is obviously not wheat-free.

But I still think it's from my dad's side.

BUT, neither of my parents have it I think, because they have NO symptoms of Celiac at all. I don't think they've been tested though; but still, they're both tall and at normal weight.

WHERE DID MY celiac disease come from???

Thanks,

Jackie