Nobody Gets It!

[jaten]

youLOVEamelia,

I think you're on the road now

You're right, so many people (friends & family) don't understand, but I don't think it's willful disregard, it's just a concept that's not easy to understand. I mean, come on, everybody can eat bread and pizza, right?? What? No soy sauce, either?? Think about it from their perspective, if we're not careful we can begin to sound like neurotic hypochondriacs very quickly.

Celiac is getting more publicity than when I was diagnosed late in '05, but it's still largely unknown to much of the general public. Unfortunately, for us, many (most?) social events revolve around food. I have had to adjust my perspective so that the social event is about the socializing; I don't have to have a fork in my hand to join the fun!

What works for me, when new friends ask me out to eat, etc. is to smile genuinely and say something like, "I have a specific kind of food intolerance that makes it very difficult for me to eat out. I would hate to miss out on the fun, though, so yes, I'd very much like to come. I just want you to know beforehand that I'm completely happy tordering a coke, or something and enjoying the conversation and good company. The only reason I'm even mentioning it now is so that you'll understand later at (??)"

That acknowledges the elephant in the living room, but doesn't make the evening about the elephant. I eat either before or later and get to enjoy the socializing. Friends quickly begin to understand and in a non-threatening way opens the door later to more conversation about my "food intolerance" aka Celiac. Sometimes we go where I can order safely, but the trade-off is that sometimes we go to a friend's favorite restaurant, etc. I don't want to miss any of it When others sense that you are truly relaxed and comfortable socializing without eating, then true friends will soon completely relax with you (and with Celiac), too!

You'll have a great time in social situations if Celiac is something you have, not who you are.

Hang in there! Take care!

[sickchick]

Well shut my mouth, I am going to try that tortilla recipe! sweet!

[ShayFL]

Well shut my mouth, I am going to try that tortilla recipe! sweet!

You can also make them with other grains. Teff is interesting. You can try mixing amaranth with sorghum. That tastes a bit like corn to me. Which is nice cuz I cant have corn.

[luvs2eat]

I feel your pain! I had a friend who kept asking, "Can't you just eat a LITTLE??" She's a diabetic and can adjust her insulin (altho she shouldn't!!) if she eats too much of something. I found a great line here and started to reply to those people, "That's like asking if I can eat just a LITTLE rat poison!"

Now, most of my friends are very attuned to my food issues and go out of their way to help me out, but eating out is always a challenge!

btw... I grew up in Pennington, right near Lawrenceville!

[elonwy]

Hey Amelia, about school.. I worked at a Uni when I got diagnosed, and had to deal with cafeteria stuff. Someone on the staff of your university is a dietician who can tell you about the food you have available. You may have to hunt around to find the right person to talk to, but they have to have someone available to help you (this is in place because of food allergies, etc). You might be surprised once you get ahold of the right people, they can be very helpful. I talked to mine and they started carrying Amy's gluten-free meals in the frozen dinner section in the cafeteria. At the very least they should have a list available of what they use to make the food, and these conversations can all be had outside of the cafeteria and out of side of silly friends who don't get it. Just a thought....

[jparsick84]

There's a few things to remember, Amelia:

1) People at this age (20s) are selfish, and there's nothing you can do about it. I went through almost exactly the same thing as you did - diagnosed, then off to school. Only in my case, it's grad school, and all my classes are online so I don't ever actually meet anyone. On the plus side, I have my OWN apartment with my OWN safe kitchen and didn't have to get a meal plan. You might want to look into this next semester, as you'll then have a place to "escape" to when the family gluten gets to be too much

2) I've found that the more you ACT like it's no big deal, the less your "friends" will shun you. This isn't to say you should go to the pizza parlor if you can't handle the emotional side (I for one still can't go to the pizza place without crying, so I don't go.) I know this can be hard if you're traveling or on a day trip, but it sounds like you're already taking steps to help yourself (going to PF Chang's cause of the gluten-free menu). When you talk to the waiter, ensure HE knows it's a big deal, but don't go into all the gory detail of what happens when you get sick to your friends - they really don't want to know. They think they do, but they don't. If they ask, the best response is "Well, my small intestine tries to eat itself and then my stomach explodes" People can't tell if you're joking or not, but they never press any further.

3) One thing that has helped me when I'm lonely is to go to the movies. Yes, by myself. Just being out in public, doing a normal thing, can really help get your mood back on track. AMC theatres' nachos are safe to eat, so you can even get a snack if you want. (Of course, read the label before you buy - you may have other allergies that make it unsafe).

4) As far as nurturing your emotional health, I strongly recommend a psychiatrist if you can afford it. (Your school might offer free or discounted counseling). I think a lot of newbies forget that they are allowed to mourn the old life - and you should. Once you allow yourself to mourn, then you can heal. I'm not trying to sound all new age-y here, but a psychiatrist will listen to you, so you can have more fun with your friend, rather than depending on her for all your emotional support. It took me almost 6 hour-long sessions before I stopped feeling so sad/angry at the world, so don't get frustrated if it takes you a while before you're feeling more emotionally normal.

5) Scouting out a local restaurant beforehand is a GREAT thing when your friends want to do dinner. Then you can suggest your safe place and enjoy the meal more. Mexican and Thai are supposed to be naturally gluten-free - just stick to the rice and corn dishes. And always ask - even if your meal companions are rolling their eyes, YOU ARE WORTH IT. Don't let them pressure you into making yourself sick.

I hope this helps, and if you ever want to talk more personally, don't hesitate to message me.

GOOD LUCK!

[youLOVEamelia]

Thank you guys so much!!!!

I really appreciate all the great tips you're giving me. I'm already feeling better. It's good to know that when nobody understands, I can always vent here. <3

[bakingbarb]

I just want to add that I have had some very bad experiences with some friends and the people here helped me work through it. BUT I will say about those "friends" I don't consider them friends at all anymore because they refuse to try and they act like I am such a burden because I want to eat somewhere nicer then Jack in the box! It isn't as simple as that, they are the user types. We all know that there are different types of people and some are just not worth it.

I started a new job and the people there couldn't be nicer if they tried and are very respectful of my being gluten free.

What I am trying to say is don't give up. Don't blame yourself ever for crappy people because its not your fault. If these people can't handle this, wait till they get "old" and are not so healthy, then it comes full circle for them and they find out what its all about! I truly believe in karma!