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3 Years Later And Still Trying To Cope

Lexi

By Lexi
in Coping with Celiac Disease

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Lexi Enthusiast
Lexi
Posted

I have been doing this whole gluten free thing for almost 3 years now. I have learned to accept it, but I just CAN'T believe how difficult it has made my life. And, after all the explaining I have done to my family, I CAN'T believe that they STILL don't get it. My Dad still thinks most of it is in my head (even though I was like a walking skeleton and Zombie before I found out what I had). And, my friends and family STILL invite me over and offer me things that they CLEARLY know I CAN'T have. It makes it so hard - I don't EVER want to go to Social Events anymore. And, then my famly went on this great vacation to the FL Keys, and I couldn't eat anywhere. I was home cooking my own dinners when everyone else got to go out. People don't understand that one wrong meal could ruin the whole week. Does anyone else experience this.....and I have gotten so paranoid because I am so afraid of ingesting the smallest amount of gluten. I have gotten to the point where I am afraid to use other people's silverware and plates or salt and pepper or anything.....I am ONLY comfortable eating in my own home because I am so careful about everything. It's crazy......and it makes me life so difficult. Sorry.....I had to get it out! :)

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Skylark Collaborator
Skylark
Posted

It sounds to me like you're still too focused on food. I never go to social events hungry. :lol: Friends and family can offer me all the gluten-containing things they want. I don't take it personally and if I'm not hungry I really don't care.

Vacationing is a pain, for sure. I do things like buy tortillas or rice cakes and lunch meat at a grocery store and eat that rather than cook. I just remind myself that it was much worse ten years ago trying to vacation depressed and with no energy. I have fun now!

As far as your dad, he's going to think you're crazy about something. If it isn't gluten, it's your job, boyfriend/girlfriend, your favorite hobby, or the way you decorated your house. (Or in my case, all of the above.) My mom thought I was crazy at how careful I was with gluten. Dad understood because he's a scientist too and understands immunity. Now I have the last laugh because Mom is off gluten and discovering she's quite sensitive.

missceliac2010 Apprentice
missceliac2010
Posted

Poor thing. I feel your pain. My mom's favorite quote when I am feeling really down about my diagnosis is to say "Heather, it's not Cancer, lets keep some perspective here please!" She's an RN who runs a cancer center in my town. She sees really bad stuff every day, and she's right....it's not cancer. I remind myself of that when I get down. I also find that a gluten-free cookie or two (either something I made from a mix or bought ) gets my chin up again.

Eat before gatherings. Offer to bring a side dish (at least you know you can eat something!) Have a tall glass of something or another. Enjoy the conversation. Fear of glutening cripples me sometimes, I understand. Especially because my bf, Mom and kids have noticed that a big side effect for me is a pretty negative and nasty attitude. I get so on edge, and I say some nasty stuff which I have to apologize for later if I'm glutened. It sucks!

But that said, life must go on. I had gastric bypass surgery 3 years ago and learned then that food is fuel...not my best friend...not a necessary party starter...etc... So my "fuel" list of things I can eat has been reduced a bit more (I already can't have much sugar) but so what?! I have a beautiful family, a great job and my health. Chin up sister!

That's my best attempt at a pep talk for you Lexi. :) Good luck!

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

It sounds like you need focus less on food and more on the people you are spending time with. Don't get me wrong, I'm super sensitive and afraid to eat out at many places too. But there ARE places with gluten free menus that do things right. Try taking your friends or family members to those places. Still ask all the necessary questions to be safe, but then once your food is ordered relax and enjoy your time with your friends or family.

If you still don't think you can eat out, another thing you should do is throw a party. Make ALL gluten free food. Make simple things that can either be made in advance or don't take much prep. That way you are not in the kitchen all night and you can just enjoy yourself without worrying about the food. A night where you don't have to constantly worry about cross contamination from one dish to the next ought to take your stress level down.

Yes, it always take planning in advance to go out, but it can be done. People are always going to offer you things you can't eat because they don't live your life. They are not constantly thinking to themselves: "____can't eat this, so I'll offer it to them anyway." (At least I hope not!) Most likely they are just doing what people normally do at social events, passing around food. You need to have your own food that you can eat with you for times like these. So when the cookies get passed to you, you pass them on and then pull out your own baggie of gluten-free cookies. Or you eat your favorite gluten-free food right before you go to a party so you are stuffed. Or if it's more of a dinner party, you bring something you can eat and fix yourself a plate of it first so theres no CC. Other people don't have to think about things like that so they are not going to accommodate you 95% of the time.

You need you change your expectations that people are going to suddenly "get it" and start making you only gluten free food that is safe. Some people may have people like that in their lives (my DH is very understanding), but you don't. And even if people "get it" and understand the need for you to be gluten free that doesn't mean they are going to automatically do everything right while trying to make you food. That doesn't mean they are going to change what they do for one person when they are making food for everyone or planing their vacations. Yes it would be nice if they took your food needs into account, but you can't count of that. You need to look out for you and not worry about what anyone else says. Perhaps you can suggest a vacation spot next time where you can eat out at more places. I hear Disney is very accommodating. :)

MommyStina Rookie
MommyStina
Posted

I totally understand! My family is the same way. I was also diagnosed almost three years ago and my family is completely clueless as to how it works. I have a cousin that was misdiagnosed a long time ago and only had to be on the diet for two years. So, my mom keeps telling me that it is only temporary and I will be able to eat all the things I love again soon....ummmm...not really.

I think you have gotten a lot of good advice from other members here so far. I would also tell you to eat before you go, take a snack along or side dish you can eat, offer to host the event, drink instead of eat...eating was a BIG social thing for our family, too, before I was diagnosed. We have actually lost friends since changing our lifestyle because going out to eat was a big part of life. We do go out to eat, but check, if possible, with the restaurant ahead of time or go to a place that has a dedicated glutenfree menu. Any place that has a real chef in the kitchen is usually not a problem (not that i have encountered, anyway). If it is still semi-crippling if there is food involved, always keep a glass of something in your hand and focus on the social part, not what everyone is eating. It is hard, but do-able.

cassP Contributor
cassP
Posted

mmm GlutenFreeManna's idea of throwing a dinner party with all Gluten Free food sounds like a great idea! can i come?

;)

i know it's hard... and sometimes i'm completely happy with my diet- then someone i work with will say: "God, i dont know how someone like you eats!!!???/!!... cant you just strengthen your immune system so you can eat normal stuff again??" OY <_<

anyways- it IS so true- it's not a bad disease at all- just inconvenient- i'd take this disease over the other ones for sure! smile and know we all understand :)

K8ling Enthusiast
K8ling
Posted

I know it's hard. I LOVE LOVE LOVE food, I love to cook, I love to try new things...and now I can't. WHen I go to spouse socials I bring my own wine and my own food. I pack a picnic. THIS base is used to it now, but when we PCS I get to start the explanations all over again. It stresses me out to think that not only am I going to have to get my son settled, my animals comfortable (after having them in the car for heaven knows so long) track down a house, rejoin the spouse groups and playgroups, get a job....but i have to explain Celiac Disease AGAIN. It is disheartening.

But it's true, this isn't cancer. It won't kill us if we handle it right. It's a pain in the butt, that's for sure, but we can handle it (with some friends to vent to, of course :P)

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