How Do You Make Then Understand What It Is!

[connole1056]

I would not worry about offending your hosts if they are not worried about giving you gluten! People who care about you will want you to be healthy! I would not be offended if someone asked me about what I put in my food.

[stef-the-kicking-cuty]

We just had the our women gymnastics team meeting. Usually we hold it at one of the women's house and everybody brings something to eat. Cause I wasn't sure, what time it started, I called one of the other women ahead and then we got to talk a little bit. By the way, they all know, I can't have gluten. And she said, "Oh, and you can have mine, it's without gluten..." I told her then, that I rather not have it, because she doesn't know anything about feeding me safely and there could be hidden gluten. She didn't understand at all. Then when we were at the meeting, we had some vegetable with a dipping sauce in the middle. I only ate the vegetable and the chinese wrappers I had made. Then I took the dipping and looked at the label, put it back on the table and went on with my eating the vegetable without dipping. Couple of minutes later somebody asked me, why I don't eat the dipping. And I told them, there was probably gluten in it. They looked at me like I was stupid and I got these "since when does dipping have wheat in it"-questions. I just replied as ignorant as they talked to me: "What do you think they bind it with? Already heard of wheat flour? And do you know what modified food starch is???" Then, probably to try to get their right...whatever. Another one said: "Oh, just try my potatoe salad." I replied: "What's this white sauce on it?" She said, it was Mayonnaise. I replied, Bingo, same thing, even Mayo has this in it.

Darn, people are really ignorant. Then just as if they wanted revenge, only one of the women ate my wrappers. To damn bad, then I had all the good wrappers for myself. Yippie! People are really stupid sometimes... I told them, if they are really interested in feeding me the right way, that I could teach them. But they would need to know certain brands that state these things on the label and the right kitchen supply. That was it, end of discussion. I guess nobody bothers me again...lol.

[Guest Eloisa]

People are just so inconsiderate and always feel insulted because you refuse to eat what they make or whatever they bring. Most people don't understand when I say I can't have wheat so they automatically think that I can eat white bread or white pasta. I have up explaining what wheat was and just tell people flour or anything used as a thickener. Some people are just not worth the trouble of explaining cause they'll never understand.

[phakephur]

Stef,

Your insensitive friends have inadvertently put their finger on the rub. Wheat and its derivatives generally don't belong in salad dressings or potato salad or ice cream or a myriad other things, but there it is. It's not giving up Bunny Bread that makes the diet so tough, it's having to dodge all the bastardized foodstuffs.

I can't wait until next year. "Natural flavor" is really chafing my hide lately.

Sarah

[stef-the-kicking-cuty]

Hello Sarah,

what is next year. Did I miss something? Please inform me, if I did. I haven't been here for quite a while.

[jenvan]

I understand Stef. I am renting a cabin with some friends this weekend and my friend went grocery shopping for it, and explained all the things to me that I "could" eat that she got, and I replied to most of them.... "sorry, can't eat it !"

[KaitiUSA]

Hello Sarah,

what is next year. Did I miss something? Please inform me, if I did. I haven't been here for quite a while.

I don't know if this is what she is talking about but a bill came out that passed that companies must list whenever their food contains the top 8 allergens(which includes wheat) Even though this won't cover rye, barley, or oats it is a good step for them. Natural flavoring would have to say wheat by it if it contains it, and that kind of thing...I believe this comes effective in the beginning of 2006

[stef-the-kicking-cuty]

Ah, yes, I heard about this bill, too. Well, then we definitely know where wheat is in, hugh? But it won't help us much, cause we still don't know, what we definitely CAN have.

@ jenvan: I read the post you wrote about this weekend in the cabin. I didn't reply, but if I was you, I would go with my "gut" feeling. Means, if you don't want to go and you're tired, just don't go. Your body knows what it needs. And don't feel bad about it. There will come another opportunity...

[Guest Eloisa]

I heard the same thing from a close political friend who works in Washington about this Bill too. I'm hoping this will give us more choices in the future on what we can grab and eat.

[Guest kmmolina]

Rob, the family has been one of my biggest challenges. I married into a very large Mexican family where food is apart of every social occasion...even just a 15 minute visit. At work, where we were going out to eat every day, it isn't much easier. AND I'm getting tired of being the center of attention and talking about it 20 times a day. So, what I started doing this weekend is I prepare my own meal and take it with me. There is a rice pasta by Tinkyada that is really good...not mushy. I made macaroni salad, took my own meat, veggies, and fruit. Even my own corn chips and salsa. This seemed to relieve some of their gulit for not feeding me, which reallyl isn't their reponsibility. I am also learning to ignore the ignorant. I thought finding the right foods was going to be the most frustrating, but this family/friends issue is really at the top of my list. Good luck in find your way.

Kathleen

[Guest Eloisa]

I come from a Mexican family and totally understand. Now after me being celiac they have made sure that they cook everything with natural ingredients with lots of corn tortillas.

[Guest kmmolina]

I'm still so new to this that I don't always ask the questions I should. A couple of weeks ago my sister-in-law brought over some rice with fideo in it. Not even thinking I ate a lot of it. The next day I really had some intestinal issues and started thinging back on what I had eaten. Between the fideo and maybe the tomato sauce she used...well, anyway, since then I have been taking my own food. I'm constantly learning and educating.

[ms-sillyak-screwed]

We need to wear flashing signs in the middle of our foreheads. Listing

Toxic Food that is KILLING US! So each time we don't have to explain to people who don't understand.

I like that web set you-don't-look-sick-dot.com...they are right people don't get it!

I feel the same way too, being Italian -- my entire life with sweet cream butter on Italian bread, pasta, macaroni, cheese, canolli's, cheesecake, capacinno... Oh, I could just died now. I can't e-v-e-r - - n-e-v-e-r eat them again. No wedding, birthday, or créme brulée. Oh God why?!

So how do we make the world wake-up and take notice to Celiac-Sprue?!

We need to find some major celebrities who are suffering, as we are with CS, and get an awareness movement going.

First I think, we or it, has to have a name that people can say and remember. Like TOXIC Food Disease, or something else then what it is. When I say, "I have Celiac Sprue", people look at me like, "...what? How do you say it? Do you spell it with a S, or is a who? ...Gluta Huh?"

Where did the sillyak name came from anyway?