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Emme999

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Emme999 Enthusiast

<_< AAARRRGGHH!!!!

I swear, I was doing SO GOOD with this gluten-free thing - then I come home from my boyfriends house and my mom tells me that there's a steak in the fridge. Cool! (I thought ! Silly me <_< ) "Is it gluten-free? Has anything at all been put on this steak that might have gluten in it?" Of course I was assured that it was safe.

Of course it wasn't!!! :angry:

I don't even know what they did to it, but I got sick. First time for me, actually, that I've had the big D from contaminated food. And I'm sure it was that because I've been having all the standard (for me) emotional stuff that come with getting glutened (suddenly thinking I should break up with my boyfriend, phenomenal sadness). Plus, not being able to type, not being able to spell, and .. well, it looks like someone pulled the rip cord on my stomach!) Ugh!

Is there any possible way to explain to my family how serious this is? And that there can't be any carelessness?

I was doing so well :( Now I wonder how long it's going to take to get back on my feet again :( And I'm scared that it will take too long for this emotional crap to go away!

Geez, my boyfriend and I are having a bunch of friends over for a barbeque - that's going to be stressful enough already. Now it's going to be even harder :(

Does anyone else hate social gatherings where food is the centerpiece? I used to love them - now I look at them with dread! I told my boyfriend today that I want to go on one of those gluten-free vacations or cruises - just so I can have some time to not worry about food - just so I can feel like a normal person again for a little while.

*sigh*

I'm glad that I, at least, have wonderful people like you who understand. I'd hate to be alone in this. It feels so much that way sometimes!

- Michelle


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ruddabega Apprentice

I'm sorry your family is being so stupid. I was diagnosed in November 2004, but my family's been pretty good about it.

I would explain to them that gluten is not an allergy, but it's a POISON. The antibodies attack your system for months after each time gluten is digested. So, when your family tells you that there is gluten-free steak, and they're wrong, you feel the affects for up to six months (although they are minor.)

Hope that helps. It's a very serious disease!

Camila

Guest nini

Gosh, I'm so sorry that happened. I'm there with you on hating events centered around food. We are having a BBQ at our house today (Hubby's brilliant idea) and while we are providing gluten-free Kraft BBQ sauces for anyone to put on their meat, he told people to bring whatever they want to throw on the grill, so if some brilliant (NOT) person brings something marinated in gluten then our grill is now contaminated... It's a brand new grill and so far uncontaminated (gas grill)... He also bought a whole bunch of gluten laden buns for people to use, so now I'm paranoid about crumbs getting everywhere in my house.

I made a gluten-free coleslaw and I'm going to keep one container separate (and safe from crumbs) for me and my daughter (hidden deep in the fridge), I'm debating making a gluten-free pasta salad, but right now that just feels like to much work

We also got a whole bunch of fresh fruit from Whole Foods for people to munch.

I swear this whole thing has me so stressed and I just want to relax.

KaitiUSA Enthusiast

aww...I'm sorry this happened to you. I know exactly what you mean though...I have some relatives the same way. It gets old but I have learned not to trust them with this and when I go there I have to just be extra alert . I usually end up bringing my own food because it's just to risky to eat there.

Hope the BBQ goes well....and feel better soon :D

celiac3270 Collaborator

Awww... :(

If you get emotional when you get glutened, though, make a conscious effort not to make any important decisions that you will regret later (i.e. breaking up with you boyfriend when, a few days later, you'll feel completely the opposite way).

Does your family take it seriously usually or do they not understand it? I guess all you can do is supply them with the facts...what happens to you internally when you get glutened and the external symptoms--then explain that's only short-term and if this happens all the time, there are long-term, worse possibilities, as well. On the other hand, if you find that this happens all the time and they won't change, you have to be much more cautious about eating food that could be contaminated, even if they say it's not.

As I've probably stated ten times already, my mom and I went to that GIG conference this year. Besides me, she is hands down the most celiac aware and helpful to me. My brother can read labels as skillfully as any celiac (even down to the maltodextrin and flavorings), and is aware of contamination, but he's only ten...and my dad is the least educated about celiac. Maybe six months into my diet, he asked if I wanted corn flakes (hey, it says "CORN flakes" so it's gluten-free." Not quite...if you read the label it has "WHEAT" in the ingredients). He isn't aware about contamination or even which pasta is mine (despite my having two cabinets with only gluten-free food), so, sad as it is, I wouldn't trust him to cook a gluten-free meal for me--I would just do it myself. Anyway, after the conference, my mom and I both wished he had come, too...so he could have better understood it and heard from the doctors how serious it is, how careful you have to be, how socially debilitating it is. We were going to bring the entire family to Utah next year for the next conference, but as I have also harped about, the schedule doesn't coincide with my finals for the next two years. Oh well.... The point is that I'd advise you to try to bring someone who doesn't really understand to the conference. They would learn so much and then it wouldn't be that crazy daughter talking about a crumb of bread, but a bunch of medical experts reinforcing the importance of this. Also, if you want to forget about gluten, that's the place to go. I was so sad to leave because it was amazing to go to a buffet and find things that taste great, not read a single label, not worry about contamination, not worry about if it's gluten-free in the first place, and then find ten or twenty new products that you had never seen or heard of and go look for them on the Internet or in the health food store. That was gluten-free paradise, lol. Of course, if you actually wanted to go somewhere, there's Bob and Ruth's travel club or a similar name--they make gluten-free cruises all over--I think they're making one soon to Italy, but they go basically everywhere.... and many cruise lines will accomodate to gluten-free, but for a 100% worry-free cruise, you would want to go with bob and ruth's, rather than a normal cruiseline catering to one person's special diet.

Hate social gatherings where food is the centerpiece? Tell me about it, lol. :lol:

Wow, I rambled, but I hope you can glean something from this......

Feel better! ;)

-celiac3270

frenchiemama Collaborator

This weekend my mom (who is normally very good) had a cookout because my sister was coming to visit (she only comes a few times a year). My sister is vegan, so of course everything my mom made was geared toward her. I got there and asked what things I could eat. My mom just kind of stopped and stared at the table for a minute and said "Oh gosh, I guess there isn't anything. I do have some eggs.....". So that was great, I got to sit there hungry because my mom forgot about me. Needless to say I left early.

Just don't let those fools cook for you anymore. I have come to the realization that even when I am invited somewhere I need to always bring something, so that there is at least one dish I can eat.

Diosa Apprentice

I feel so bad for you guys. :( Your own families forgetting about you or being so careless like that. That really sucks!! You are all welcome into my family (that's basically me, Paul, our puggies, bunnies and his mum and dad). We'll treat you all with respect! :) Ok, the puggies may not, they will hop on your lap and lick you to death. :)


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Carriefaith Enthusiast

I'm sorry :( No matter how much they love you, some people just don't get it <_< Some people in my family can be careless... well I shouldn't say careless, maybe forgetful. And it can happen so easily. When I cook I have to watch my stuff like a hawk

there's Bob and Ruth's travel club or a similar name--they make gluten-free cruises all over--I think they're making one soon to Italy, but they go basically everywhere.... and many cruise lines will accomodate to gluten-free, but for a 100% worry-free cruise, you would want to go with bob and ruth's, rather than a normal cruiseline catering to one person's special diet.
:D

Wow! I must look into this! Wouldn't that be wonderful. Carefree for a week B)

Merika Contributor

Hi Bean, that sucks!

In my oceans of experience with celiac (ha, not!) in the last 18 mos, I have come to the conclusion that I will not eat anything I cannot read the label(s) on. And I generally won't eat anything at anyone else's house they've prepared, even if the labels say gluten-free because of the cross-contamination issue, unless my mom made it and she is celiac too, or my dh because he has taken the time to learn about it. Yay dh!!

My dad is grudgingly accepting of the whole diet, but doesn't really take the time to learn the details, though he's getting better. He thinks we are too concerned about little things.

Here's the thing though. I've lost days/weeks/years of my life to feeling like crap and I'm not willing to lose more of it due to eating unawares, if you know what I mean. So all those people who aren't looking out for my best interest in the detail that I look out for myself, well, I just can't be bothered with offending them a little every now and then, you know?

In fairness to your family, they are probably still gettingused to your diet. Gluten hides everywhere, and was probably in the marinade. For folks who've never read labels, or done a lot of from-scratch cooking themselves, it probably never occured to them that wheat would be in a sauce that so clearly does not look like bread. (Don't get me started on the horror of frankenstein-foods :))

Hope you are feeling better soon!

Merika

Emme999 Enthusiast

You guys are all so great *sniff* I wish we had a celiac commune where we could all just be safe and not have to worry about anyone messing with our food!

Ruddabega - the antibodies attack your system for up to SIX MONTHS?? Holy hell. :blink: How do you know this?

Nini - Ugh! I so know what you mean!! We are having a BBQ too - and though we have bought all the meat (and the sauces, etc.) my brilliant boyfriend told our friends to "Bring a salad, dessert, and some bread" BREAD for hell's sake. Bring some bread! The sentence just keeps echoing in my mind. Today I called him and told him how I'd been poisoned and really *didn't* need that since we're having a BBQ today and it will be stressful enough for me already... he said, "Michelle, what are you worried about? We have all the food here and it's all safe for you!" Ya, but then you told our friends to bring BREAD! "Oh ya.." Duh!

Part of me is thinking I should just eat first and not worry about it. I hate that.

Kaiti - You are wise. I should have figured out by now that I just can't trust them :(

celiac3270 - You know, it *seems* like it would be easy for me to make a conscious decision not to make any decisions - but it's not :( I have all of these amazingly powerful compulsive urges to say & do things that are not so easy to control. I called my boyfriend today and told him what's up and asked that he be "extra nice" to me today. He grudgingly said that he would be. I wonder if he has any idea what thin ice he's walking across..

As for the vacations, I looked at Bob & Ruths site the other day. I noticed that they are even having one a Club Med! Whoa! That would be all sorts of cool! Glutenfreeda has vacations too - but they are crazy expensive - and I noticed that you have to add $100 for each additional food intolerance. Since I would be adding dairy, eggs, and sesame - that could get REALLY expensive! Geez!

I wish you could come to the Utah GIG conference! I would love to meet you!

Frenchiemama - Oh :( I am so sorry :( That absolutely sucks about your mom/sister deal. Too bad you aren't allergic to eggs like I am ;) Then you could have made your mom feel REALLY bad! :P I don't blame you at all for leaving early. I'd bail ASAP!

Diosa - thank you :) I love pugs!! You better be careful about your invites ;)

Carriefaith - Thank you. Unfortunately, I can't help but think that if my family really loved me, they wouldn't be so absolutely careless with my health :(

Merika - I love your quote: "I've lost days/weeks/years of my life to feeling like crap and I'm not willing to lose more of it due to eating unawares, if you know what I mean. So all those people who aren't looking out for my best interest in the detail that I look out for myself, well, I just can't be bothered with offending them a little every now and then, you know?" - *Such* a good point!

In fairness to my family - no! There is no fairness :( They don't even try to help me with this. Once in a while my mom will give me cash for gluten-free foods - but that's where it ends. I've given them tons of papers that they read & immediately forget. I've told them things that I've read, heard from my doctor, etc - and it's just too much of a pain for them to deal with.

I told my mom that I got sick and she's replied, "it's probably from something else - I get sick all the time." Well, I *don't* get sick all the time! :angry: There's no uncertainty here for me.

I don't know how I'm going to survive this day :( Since finding out about celiac disease, I've started hating holidays. It's just not worth the emotional crap I find myself dealing with. :(

Guest nini

My mom just called and asked if it was ok if she brought cupcakes for all our guests that won't be consuming gluten free foods... WTH???? Fine just keep your damn crumbs to yourself. At least she asked first.

pugsnapps Newbie

Oh my goodness - I know where you guys are coming from. It gets so frustrating sometimes :angry: . I am sooooo sorry this happened to you too :( !

I have gotten to the point that I keep "Think Thin" gluten-free meal replacement bars in my purse at all times (brownie chunk is the best). I always eat prior to going to any get togethers (or I bring my own in a sealed container). B)

Overall my family is decent about it, but they don't really understand <_< . My husband I know understands, because he has seen how sick I can get. Yet even he sometimes thinks I am just being a pain in the ass. I do understand that he gets frustrated since I'm the one sick not him, but it's not like I've banned bread from the house. He has one area in the kitchen where he can have his bread... and I still buy him cookies and stuff. It's just easier to cook one meal gluten-free than two seperate meals one Glutened & one gluten-free. Getting him to use a clean knife for the PB & J and Butter is still an on going issue. I don't know how many jars of PB or sticks of butter I've thrown away. Eating out is always a sore spot too with both friends and family... It makes me feel like the picky kid that says "but I don't like that" all the time. Chief difference is "I CAN'T have that" :angry: .

However, I think the hardest thing really is the people I work with. You know the last minute "lunch meeting" with the boxed sandwiches for lunch. Or the out of town business trip where the company your visiting has already picked the reasturant. Everyone gets to eat except for me. That's why I've stopped going out to eat with most of my lunch buddies at work... it's easier.

Why can't everything be gluten free!

Thank god I finally found the gluten-free protien/meal bars that actually taste good.

They are my catch all saftey net.

celiac3270 Collaborator
I wish we had a celiac commune where we could all just be safe and not have to worry about anyone messing with our food!

The GIG conference, lol. Seriously... :lol:

Ruddabega - the antibodies attack your system for up to SIX MONTHS?? Holy hell.  How do you know this?

I don't think that's true. Any damage done by gluten (in the form of contamination, etc.--I'm not talking about twenty years of damage) will be completely healed in three months.

As for the vacations, I looked at Bob & Ruths site the other day. I noticed that they are even having one a Club Med! Whoa! That would be all sorts of cool! Glutenfreeda has vacations too - but they are crazy expensive - and I noticed that you have to add $100 for each additional food intolerance. Since I would be adding dairy, eggs, and sesame - that could get REALLY expensive! Geez!

Well, if you're looking for a worry-free vacation, that's probably the way to go. If you're looking for a fun, educational, find-more-great-gluten-free-products-weekend, I'd recommend the GIG meeting.

I wish you could come to the Utah GIG conference! I would love to meet you!

I know! I want to meet you, too... I was looking forward to coming back--and I had made a couple friends who would be returning. Aww...stupid schedule--wrong dates, ugg <_< If I ever visit SLC, I'll e-mail you :D and let me know if you're coming to NY--home to the most gluten-free restaurants in the US, lol. :lol:

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