fisharefriendsnotfood

It's not pathetic at all! Especially if you are newly diagnosed, I can see why you are crying. It's all a question of willpower, don't worry. You will be stronger soon!

-Jackie

I didn't enjoy the Girl Scouts at all.... I was a Daisy Troop leader a few years ago and ...never again. I think it's pretty poorly run from the top down. I also think the prices they charge for necessary items is just flat out outrageous. No excuses for the prices they charge. My scouts and I did tons of fun stuff, but it was 100% my doing. It's all work... like planning a birthday party each time. Plus, you have to deal with the mothers... and there's always a freaking nut in the bunch. I had a doozy.. Oh, man. That was a bad time. I would not recommend scouting to anyone.

It's much different being a leader for young girls than actually being a scout/guide. Although leading in Scouts may be different from Guides, I don't know, it's much harder and less fun being a leader for younger girls. It's just your experience. I know what you mean, but the way it's run depends completely on the leaders (the girls also if they behave), and if they set up things to do, camps etc.

-Jackie

Thanks for the support and encouragement. My daughter is 6 and I think it would be too much for her to do both. She breaks down pretty easily when she is over doing it. She may have to drop dance, due to the studio being run extremely poorly. If that happens then we will seriously consider Girl Scouts.

How do you guys handle the food during outings, campouts, etc.? Would I have to send EVERYTHING like I do now with every other activity my kids are involved with at school, church, etc. It gets exhausting....

Mariann

Well, it's not too hard for me to go camping as per the food stuff. If I am planning the camp as I am doing this spring (so excited ) then it's obviously easy, as I can tailor the menu for my needs. When someone else planned the menu, I ask them for a copy and then bring up all the altervatives. I could still take part in the cool camping cooking methods that your daughter may try if she goes camping with Scouts, such as omelet in a bag and hot dogs in an orange juice carton. (are not as gross as they sound- you do not actually eat the bag or orange juice carton lol.) I just bring my own hot dogs, cereal, maybe a few slices of gluten-free bread, etc. Not too much.

Unfortunatley, the only thing I was prevented from doing partly due to my Celiac is I was offered to take part in a trip to the Guiding World Centre in Mexico during the summer and did not go . It would be especially difficult to take gluten-free food because they spoke Spanish, etc.

She will learn what to eat and what not to eat. I have, and I have a ton of fun.

Just post here or pm me if you want to ask anything else, I'd be happy to answer.

-Jackie

Richard is right--as I posted above, I was a Brownie and then a Girl Scout for years. It was a long time ago, but I still remember all of the good times we had at overnight camp, earning badges (and proudly wearing them), getting involved with things in the community, the fun meetings, etc. As I remember it, and it may be different now, the cookie selling (which we did by schlepping them door to door) was not a major part of the whole experience. If it's something she is interested in, I think it would be a great thing.

You are exactly right. It's not a big part at all. By the way you described it, it hasn't changed much at all!

By the way, gf4life, I also do dance and Girl Guides. It's not too much for me, and I'm in grade nine (e.g. more homework than grade two or three ).

-Jackie

see Jackie! Rachel had to turn them down... That right there could've been a sale if they had gluten free versions!!!! LOL!

I'm just being rotten!

how many of us have had to turn them down because we can't eat them? this could be a huge untapped market for the Girl Scouts!!!!

I see what you're saying. I wasn't mad or anything, I was just saying it's pretty unlikely they will make them. Remember, the main focus of Scouts/Guides isn't cookies, so it's not like we have a 'market'. Well, you're right, the worst they could say is no so you could give it a try.

Aww, Rachel, don't worry that you weren't a Scout - you could always volenteer as a leader!

-Jackie

Now my daughter (for the second year in a row) has brought home the flyer from school for the Girl Scout and she wants to join. The only thing that makes me hesitate is the whole cookie selling thing. It would just be torture to have them in the house and have to sell them, but never be able to eat them. Of course all of my daughter's customers would get their deliveries! I'd make sure of it! Still hesitating though...

Don't take this as rude or anything, but not letting your daughter be a girl scout just because of the cookies is kind of silly. In my Girl Guide unit, all we have to sell is one case (12 boxes). If you want to sell more, you can, but you don't have to. We only to do it twice a year. It's not so torturous. Trust me. I sell them.

-Jackie

for me there are several options for the "knock your socks off, wow this is good" pizza...

Whole Foods Gluten Free Bakehouse gluten-free Pizza Crust, top it anyway you like, my personal fave.

That is amazing! It is the best gluten free crust I have tried.

-Jackie

That's great!

-Jackie

Sorry to put a damper on everyone's hopefullness and happiness and whimsicality, but I am a Girl Guide (I live in Canada, we sell cookies too). Selling cookies is the biggest fundraiser, and it brings in the most money out of any other fundraiser. Selling the cookies isn't hard, but it isn't incredibly easy either. Selling gluten-free cookies would be incredibly difficult, and in my case Girl Guides of Canada has to pay the extra money to manufacture the gluten-free cookies, and they wouldn't sell many cases of them, making it just not worth the extra money and effort. Girl Guides just doesn't have tons of extra money to throw around.

I sell the cookies, even though I've never tasted them, which in some cases poses a slight problem, like when people ask me, "well, are they good?" and I say, "yes, of course" or something without going into any detail. lol.

Nini, DEFINITELY sign your daughter up for Scouts. Girl Guides and Girl Scouts are both part of WAGGGS (World Assosiation of Girl Guides and Girl Scouts), and I can tell you it's an amazing program. I made new friends, I go camping, we used to make endless crafts when I was younger and now it's given me something to work for as I am almost finished the requirments for my Canada Cord. It's this huge award given to Guides when they're 14/15 years old if they finish the whole Pathfinder program, which I'm almost done and it looks really good on your university applications. It's really fun.

If you have any questions just ask!

-Jackie

That sounds encouraging!! I am leaving today and sailing tomorrow on Royal Carribean. We are going to The private beach in Haiti, Ocho Riaos, Cayman Islands, and Cozumel. I am SO excited!! I am bringing a few snacks to take with when we go to the islands. I'll let you know how it went when we get back!!

Great! Have fun!

-Jackie

If it were a pill or something, I would take it ONLY:

a) at camp (I go to sleepover camp)

while traveling

c) at some huge special event and the food looked AMAZING and I would never get to try anything like it again

I find I eat healthier than most of my friends, because I can't get things like chicken fingers, fries, hamburgers etc. So I wouldn't use it every day.

-Jackie

Including, but not limited to:

Wheat (Obviously)

Wheat Gluten

Wheat flour

Wheat Starch

Wheat Germ

Anything with the word wheat in it except for buckwheat

Oats

Barley

Barley Malt

Malt

Modified Food Starch

Food Starch

Starch

Flour

Natural Flavours (check with the company - it's probably fine but you need to check)

Flavour (same as above)

Anything you don't know the ingredients of

Anything made in a mold such as shaped chocolate - the mold could be coated with flour

There's more but I can't think of them right now.

-Jackie

I did not eat much while on the islands. We weren't in Key West long enough to eat so it wasn't a problem there, in Cozumel I did have some tortilla chips and salsa at the beach, Ocho Rios I was too afraid to eat any of the jerk seasoned stuff, so I had a snickers and some dried fruit I brought along. In Cayman we had a fabulous!! lunch on Rhum Point Beach, grilled catch of the day and a salad.

I

I also went on a cruise for the winter break, on Royal Carribean. It was AWESOME. We also went to Cozumel, Ocho Rios and Cayman Islands, along with Nassau, their private beach in Haiti and Belize. It was so much fun, I got amazing dinners and they even made me desserts a few times, like banana splits and even a creme brulee once.

Nobody be hesitant to go on a cruise because of the gluten-free thing, just tell them beforehand. It is so much fun, you will be so happy you did.

I went scuba diving and snorkeling, and swimming with the sting rays. It was so much fun!!!!!!!!!!!!!!!!!

-Jackie

I've read that beer is so highly processed that it does not impact celiacs. This seems to be an area of contention. I drink it (alcohol free) and have had no difficulties, but my condition is mild compared to others. I find that if the wheat is the 6th or 7th on the list of ingredients that I am able to eat it with no difficulty.

If you have Celiac, you are still damaging yourself even though you may not be able to feel it. If you have a wheat allergy, though, this may be your level of tolerance, like people being able to eat just a bit of soy or something.

Just thought I'd point that out just in case.

-Jackie

That sucks, and I agree she shouldn't have changed the plans on you, but you have to remember that they aren't going to plan every meal especially for you. You're in university, so I assume people like to just do whatever they want and stuff. They don't know as much about Celiac as you do. They might think you're being overly careful or something. Tell them why you need to be really careful and stuff. Make sure they understand.

Good luck!

-Jackie

IThe waitress goes, "Ok I'll bring out the bread now." Then looks at me and goes, "I won't bring the wheat bread, I'll just bring the sourdough for you."

Sigh.

I got that too.

-Jackie

I've gotten the 'well, can you eat white bread?' and the 'I wish I had that so I wouldn't get fat'. But the best one ever that made me laugh so hard was:

"Wow. Does that mean you can't eat... Cheerios?"

CHEERIOS? Is that what you think of when you think wheat? I thought that was pretty funny. Oh well. I don't get mad at these kinds of things. I think they're funny.

-Jackie

That's great! (I think.)

-Jackie

I went on a cruise with Royal Carribean to the Western Carribean. It was great! They were really good about the food and everything. You just have to tell them beforehand. All we had to bring was cereal, really. They even made a few gluten-free desserts for me. They give you bread (it's actually really good). It was so much fun!

-Jackie

Jackie - that is a good one! I'll file it away, though my new workplace is very supportive.

Stephanie

Awww thanks.

-Jackie

Actually, reading your other post, I'd suggest getting your whole family tested. celiac disease is genetic, and it sounds like you could have it too. All the symptoms sound like Celiac. Many doctors don't diagnose Celiac because:

a) They don't know what it is;

Celiac symptoms mimic TONS of other things such as IBS, lactose intolerance, chronic fatigue and all those things... just a whole bunch of stuff.

c) It can't be cured by meds.

And probably a lot more reasons.

Don't worry - we can help you. On this forum we have hundred of years of combined experience (probably- well, at least a hundred lol). At least I have twelve all by myself. Hahaha.

-Jackie

Hi!

If your daughter had dh, then she definitley has Celiac. DH is specific to Celiacs. You should probably get your other twin tested too, since she has a 70% chance of having it if her twin does.

I was diagnosed when I was two years old, and it's not as hard as it seems. You'll get used to it! Other people on this forum will help you with that stuff, I'm not really good at explaining the food-ish part.

-Jackie

Hi

I am finding it very frustrating and anger provoking and to be honest I am VERY WORRIED AND ANGRY that I have celiac. Is this a death sentence disease? I feel like this disease is going to killl me.

My goodness no. Clearly your doctor(s) haven't told you anything. All you have to do to be healthy is eat gluten-free, which everyone else has explained really well to you.

I'm Sorry about your parents! That must have been hard.

Don't worry. You'll get the hang of it quickly and feel better than ever.

-Jackie

I'm so sorry. That must have sucked. But, this is an opportunity to show you really don't care what they say. If they make fun of you or push food at you, just smile and say, "Oh, well!" and carry on a conversation with someone that isn't being mean and rude to you. Or, if it's your boss or someone who cares how many sick days you take, then say, "Oh, sure! Thanks for offering me this danish." Start to reach for it, but before you touch it, say, "Oh, but wait - if I eat this, I won't be able to come to work for a week. You're okay with that, right?" Say it totally seriously with a straight face. Maybe then they'll think twice.

-Jackie

Today at lunchtime, I was sitting with my friends and one asks me if the macaroni I was eating was made of rice. I say yes, another friend asks why, I say I'm Celiac, and this girl turns around and goes, "Hey! My mom's allergic to wheat but she thinks she's Celiac."

I thought that was pretty cool all on its own, but:

In tech today, we were doing this survey assignment thing and our group decides we're doing it on food. So we're making up questions about how many times a week do you eat fast food, etc. and I say how I don't usually eat at fast food restaurants because I have a ton of allergies. (Hahaha.) This guy in my group asks what I'm allergic to, I say wheat and stuff like that, and then a girl in my group says, "Oh, my sister's Celiac. Are you?"

How cool is that? Twice in one day.

Just thought I should share.

-Jackie

Look at the bright side when the scouts or other organizations try to sell cookies and doughnuts on the street you can honestly decline without any guilty feelings.

Tom

Hey! I'm a girl guide and I sell cookies. I don't go door to door but we sell them in the mall once in a while - you're helping a good cause! For only four dollars! And you make the seller feel like they're doing a good job.

I sell them and I've never even tried them which I think is pretty funny! People ask me, "Well, how to they taste?" And I go, "Um, I'm not sure, I'm allergic to them, but everyone seems to like them!" Or something like that. Hahaha.

So why not buy a box and give it as a gift? We don't try to be annoying or just want your money, we just want to help with a fundraiser.

No hard feelings.

-Jackie