Question For Those Age 15-25... Ish

[lorka150]

Hey everyone... From this age group.

If you went to a celiac conference, and there were things dedicated towards your age group in particular, what would you want to see?

[GlutenFreeAl]

I'm thinking mostly the social aspect of this disease. How to eat out at a restaurant with friends, for instance. Or for those in the 20ish and up range, how to deal with issues surrounding eating and work situations.

Are you giving a talk next year??

[Smunkeemom]

I am 24 do I count? just kidding.

I would like to see things about "living in the real world gluten free", about how to deal with dinner parties, and such. It seems to be where I run into most of my problems (so far) people invite you over for dinner, they don't know that you have restrictions, how do you explain? should you not say anything? should you turn down the invite? do you bring your own food?

stuff like that.

[lorka150]

awesome - thanks so far! keep 'em coming!

[Smunkeemom]

oh, how do you ask to read the label without feeling weird. I have a lot of people that say "oh, it's just roast but I put so and so seasoning on it, can you have that?" and I feel bad saying "I don't know can I read the ingredients"

I guess it's get brave or get sick? (actually more like get brave or be hungry)

[GlutenFreeAl]

Weddings. What the heck do you do at wedding receptions? (I mean when you are a guest, not your own reception. My own wedding reception will be entirely gluten and soy free!)

And what do you do when a food-obsessed/OCD/bipolar/emotionally disturbed thirteen year old boy CONSTANTLY asks what you can and cannot eat?

I guess maybe that last one would only apply to me...

[Smunkeemom]

how do you deal with people who think you are on some "weird diet" by choice, or think you are just a health nut, and how do you stop people from saying things like "oh, I would just die without pasta" without resorting to my comment today "oh, I will die if I eat it, so maybe we shouldn't hang out"

sorry bad celiac day.

seriously though, how do we do what we need to do to be healthy without coming off as rude and/or crazy?

[lorka150]

these are fantastic! thank you. let's keep going! (smunkee - if you want to vent about the bad day, hit me with a pm).

gfAL - that's just you. tell the bugger to get a life.

[Ashley]

Hmm...probably a bunch of Celiac rights and how we can help for them to come into play sooner. Things like stricter laws about labels listing allergens and if that manufacturing facility has gluten produce in it. But, people will always slide through the cracks But things have gotten a lot better.

-Ash

[Clark Bent as Stupor-Man]

as has been mentioned, I would say the social aspects should be focused on... going out to restaurants, bars, clubs, pretty much anywhere you're gonna be for at least a few hours that might involve others eating and/or you needing to eat... I've been symptomatic of hypoglycemia since I was in middle school and was mostly fine going through high school/college with that by just eating before going out and eating on the run wherever I was when I needed to...

the biggest adjustment for me socially has been figuring out and planning everything I might need to eat before I go anywhere for at least a couple hours... if I go to philly or ny or even local for that matter, I have to anticipate what I may need to eat, make sure I have it, cook it, package it to bring with me, and find a way to eat it wherever I am when I need to...

I would also recommend going over easy to prepare/carry type foods... I'm searching for as many allergen-free, easy to carry, balanced protein-carb food items as I can find... I realize I'm still on an elimination diet and have blood sugar concerns as well so this isn't all strictly geared towards gluten, but a number of celiacs have multiple allergies and/or other conditions (blood sugar, candida, parasites, etc.)..

Weddings. What the heck do you do at wedding receptions? (I mean when you are a guest, not your own reception. My own wedding reception will be entirely gluten and soy free!)

I went to a wedding yesterday and ate out for the first time since Feb... I had my meal prepared separately and whatnot but it looked like there was butter used on the vegetables (I've been casein-free since Feb. as well)... I had a waiter confirm there wasn't butter but I was still suspicious... I ate the meal cause I wasn't going to send it back and have another meal made for me while everyone was eating so I figured I might as well enjoy it... I actually felt surprisingly decent throughout the night and into this afternoon but I've been growing progressively worse the whole day today... I had 2 drinks (gin and cranberry juice) for the first time since Feb. as well but I'm pretty sure the gin and cranberry juice were alright..

as for what to do at receptions? if you're just avoiding gluten and soy, you should be able to eat some appetizers before dinner and you could probably get a dinner made for you if you talk to the staff ahead of time... and you should be able to get drinks without many restrictions either...

[tarnalberry]

yep, seems like that'd be a good forum for panels on the social aspects. some topics:

• addressing celiac in the workforce (do I tell my boss? what to do about team lunches? how to answer coworkers questions?)
  
• how to handle close family versus extended family versus friends
  
• how to handle eating out versus how to handle eating over at someone's house
  
• how to handle private parties (including weddings)
  
• how to handle travel (restaurants, hotels, conferences, airflights, etc.)
  
• how to handle dating
  

I think one of the advantages of a forum/panel type discussion is, as we've learned on this board, while there is some common ground to start from, every person is different, and we'll have had different experiences to share (which we all learn from) and we'll all have different personalities which require different approaches (and these may change over time).

[debmidge]

Why use the age group of 15-25? Is there a particular reason that it's not ok for 21-35 year olds to enter into this conversation?

There's a societial difference between those who are under 21 and those over (drinking is one thing). That could come into play during a party/wedding.

[powderprincess]

how do you deal with people who think you are on some "weird diet" by choice, or think you are just a health nut, and how do you stop people from saying things like "oh, I would just die without pasta" without resorting to my comment today "oh, I will die if I eat it, so maybe we shouldn't hang out"

sorry bad celiac day.

seriously though, how do we do what we need to do to be healthy without coming off as rude and/or crazy?

Sorry you had a bad celiac day Smunkeemom!

I agree about the "weird diet" thing. I don't want people to think I am on the Atkins diet and roll their eyes when I don't want crutons (or crumbs) on a salad. Do you explain the disease everytime to avoid that? Do you get over it? What do you do at weddings? Info/disscussion on the social aspect of celiac would be interesting.

[penguin]

How do you stop people from saying things like "oh, I would just die without pasta" without resorting to my comment today "oh, I will die if I eat it, so maybe we shouldn't hang out"

Sorry, is there something wrong with saying that?

Social aspect, definitely. Also, maybe a gluten-free mixology class, it would be fun anyway

Dealing with celiac in college would be great too.

[olalisa]

Wow! These are ALL the questions that I have, and have been struggling with since my dx last month. The social aspect is killing me! I absolutely HATE to come off as crazy or high maintainence or on some fad diet, and I just try to downplay it in social situations, but I actually had a VERY bad experience last week with one woman in a group that I went out with. She would NOT let it go, and was trying to make a big deal out of me not eating anything, especially the wings...kept saying things like, "I mean what's in the sauce...just probably some peppers and oil, and these aren't breaded....oh, come ON!" along with lots of eye rolling....we were in a "granola crunch" pizza place where I KNOW that cross contamination would be an issue even if the sauce was okay, which it probably wasn't. I just want to be able to go out with a group after a rehearsal or whatever and it not be about the FOOD for me, or for anyone else!

BTW, I'm 44. These issues don't go away just because you're a little older. Sometimes I think people in my generation and older are WAY less understanding about such things. What do y'all think?

Anyway, such great questions/issues you all have raised. I think they should be discussed HERE and that we can offer each other good pointers/advice on the whole social aspect as we navigate it ourselves and learn from our experiences.

[Lauren M]

I think that everyone has suggested GREAT ideas... but I'm just curious lorka, what exactly are you planning to do?

The reason I ask is not sheer nosiness; this kind of thing is right up my alley (Communications major, PR experience, love public speaking, etc.) and I literally got excited just reading this topic. Soooo, if you're thinking of putting something together and would like some help, let me know (PM or on this thread), I'm definitely interested...

- Lauren

[lorka150]

debmidge - to address your question.

i went to the canadian celiac conference this weekend and was speaking with the coordinator for next year. togehter, we have devised an idea of having a program for those in that age group. i understand the whole 21+ ordeal (well, 18/19+ here...), but you cannot segregate a group for all. anything, highschool and college is combined that way. and older people can speak to the younger regarding university experiences.

anyway, i am coordinating this aspect of the program, and thought i would get some feedback. i think it would be awesome, however, if we could have our own conference all together... but i dont think we would get enough interest.

[Mandy F.]

I would definetly love to see stuff about eating on the run. I work crazy hours to pay for college and then go to classes when I'm not working. It seems like I'm always trying to grab something quick and end up cheating on the diet when I get desperate.

[MallysMama]

Something I struggle with has not been mentioned yet. I am naturally a very picky eater. I HATE buying a new gluten-free food (that costs a fortune!) and finding it absolutely disgusting!! I've thrown away so many gluten-free foods - I couldn't even count!! I would love to learn - before buying - at least 10 other people's reactions to the product (and how picky of an eater they are to begin with). That way - if all ten people loved it - chances are better that I'll at least be able to finish it and not have wasted my money. I find that kids, teenagers, and young adults seem to be pickier eaters (and I guess our tastebuds die out eventually as we get older )... so in a conference of 15-25 year olds - you could get some great opinions on manufactured gluten-free foods! Or do some research on this forum - and have some good picks ready to share! (Like white rice tinkyada pasta - - I can't handle the texture and taste of the brown rice stuff!)

[debmidge]

Sounds like a good plan (to get 18-25 thoughts, opinions, experiences).

My 2-cents from an oldster is that if the person wasn't diagnosed until 18-25 the family should be supportive. From what I read sometimes here, the families are stunned that the young person has a disease and tries to "talk" them out of celiac or ridicule them out of it.

I guess when you're a child and sickly the parents are "into" it; but as a young person you can be accused of being a slacker because you don't feel well, but you look healthy.

[kbtoyssni]

-How to avoid your celiac disease becoming the center of attention everytime you go anywhere. I've gone out a few times with friends in the last week and I feel like it's this huge deal because I always have to talk to the waitress, send my meal back when they screw up, ask about ingredients, etc. I don't mind, but I worry people are getting sick of hearing about me all the time. Is there an easy way to deal with this without it always becoming the topic of conversation? I don't mind it sometimes because I like people to know and it's a way to educate them, but everytime I go anywhere???

-How to eat healthily on this diet. I was really good before about knowing nutitional content of things and now I just eat whatever. I have no idea how healthy gluten-free bread and pasta is and how it compares to wheat-based products. It's hard enough making sure you're gluten-free, I don't have any extra energy left to look up nutritional values as well.

[pturse]

BBQ!!!!! That was my hardest adjustment (okay, not the HARDEST, but one of the most frusterating issues) I had to deal with (I am 29 now, but was diagnosed mid 20s). I am also a vegetarian, but what on earth could I bring to a social BBQ (or tail gate) when my beloved veggie burgers are now gone??

Also, as a runner, perhaps something along those lines of what do athletes that age eat in preparation for races etc. I know my old habits, as a younger runner, I was not the best at maintaining a correct diet and then saddled with being Gluten Free . . . that was bad.

[tarnalberry]

BBQ!!!!! That was my hardest adjustment (okay, not the HARDEST, but one of the most frusterating issues) I had to deal with (I am 29 now, but was diagnosed mid 20s). I am also a vegetarian, but what on earth could I bring to a social BBQ (or tail gate) when my beloved veggie burgers are now gone??

Also, as a runner, perhaps something along those lines of what do athletes that age eat in preparation for races etc. I know my old habits, as a younger runner, I was not the best at maintaining a correct diet and then saddled with being Gluten Free . . . that was bad.

make gluten-free veggie burgers. requires some work, but you can make a big batch one day, and keep your own in the freezer for just the occasion.

[kabowman]

Tailgaiting - I agree. I haven't been tailgating in 2 years because, you can't just help yourself to a burger or ribs from the grill, grab a beer from the cooler, and sit and chat. I go to games by myself because hubby is always working the games and try to find friends there. Well, it just doesn't work like that any more. It lost its fun...

[kbtoyssni]

I cut up a bunch of veggies the other day - onions, peppers, mushrooms, tomatoes - and wrapped them in foil to grill. (Grilling got cancelled so I can't tell you how it turned out.) I also heard that some charcoal is made from cheaper particle-type wood that contains glue, which may contain gluten, so I'm not sure if this is an issue or not. The foil takes care of the problem, but has anyone else heard of charcoal containing gluten before?