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#1 Wandering Hermit

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Posted 28 April 2005 - 07:51 AM

A young friend of mine invited me to her HS graduation Open House brunch in June. I wouldn't want to miss it. She is a sweet girl, a 3rd degree black belt from my Tae Kwon Do school, and a Diabetic to boot - I also told her about my celiac disease a few weeks ago, so she is very sympathetic, having an autoimmune life-altering problem herself. She was telling me about all the great brunch food they are going to serve, then she stopped and frowned, realizing that I would not be able to eat it.... I know she is now going to try to change things around and make something gluten-free, and I told her 'please do not do that.' I really don't want them going to the trouble, and honestly, what I cannot tell them is, although I know they would try their best, they could still easily gluten me. They have no idea about cc and how insidious it is. I just don't want to eat their food. So we will see what happens.

Last night I had my first celiac disease nightmare. I dreamed I was in a college cafeteria (but not one of the schools I attended) and just grabbed a plate of chicken with gravy and mashed potatoes. I took a big bite, then realized the gravy might be tainted, so I ran to the bathroom and went in the stall and stuck my finger down my throat but could only get dry heaves. :(
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#2 skbird

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Posted 28 April 2005 - 12:42 PM

Oh yeah, I love those dreams! I have had them where I am eating a big slice of cake with chocolate frosting, etc, and then I realize it's got sugar in it, then I realize it has wheat in it, etc. Freaks me out! I also used to dream about eating Taco Bell or pizza, after I had to stop eating peppers and tomatoes. :D

About your friend's graduation - I hate that feeling - it's almost like I get paralyzed because someone asks me what they can make for me and I think of the basic foods I can eat, then the contamination issues, then what will likely happen, and then how could I put them out and still probably reject what they make for me... and I can't come up with an answer. I feel that the most about my MIL. But my best friend always says that I don't ever tell her what I can eat so she never has anything on hand that I can eat at her house. It's just so complicated! I always tell her I'll just bring my own snacks. For an event, I just wouldn't trust people to make something for me for the most part. It's just too sketchy. Especially after the last time I got glutened and was sick for what seemed like forever! (one week of feeling horrible, one week in addition of feeling like my stomach wasn't recovered).

If it's a buffet, you can probably get away without eating anything and without being obvious about it. But maybe you can just bring something, enough to share, if it's a small group, and eat mostly that. Tricky, I know...

Good luck!

Stephanie
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Diagnosed by food challenge, 10/04
Gluten-free since 10/04
Gluten-sensitive genes: HLA-DQ 1,3 (Subtype 6,9)
Interstitial Cystitis, 7/07
Fibromyalgia, 6/11

#3 skbird

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Posted 28 April 2005 - 12:45 PM

PS I saw Rush about a year ago - we were right in front of the sound board, in the 10th row of an arena, and I could see every facial wrinkle. It was such an amazing experience! We finally got up and sat up in the lawn area for a bit of fresh air and it was like they were a million miles away. Really cool laser show! My husband is a drummer so he was very impressed by Neil's kit...

Stephanie
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Diagnosed by food challenge, 10/04
Gluten-free since 10/04
Gluten-sensitive genes: HLA-DQ 1,3 (Subtype 6,9)
Interstitial Cystitis, 7/07
Fibromyalgia, 6/11

#4 celiac3270

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Posted 28 April 2005 - 12:56 PM

Yes--I wouldn't want to put my trust in someone who doesn't know too much about celiac disease unless I had to.

I've had those types of celiac disease nightmares.....one about eating in a dark, dreary restaurant I had never been to. They told me a chocolate cake was gluten-free and, knowing it wasn't, I ate it--I couldn't stop myself. Then I got scared and wondered if I should try to throw it up or not. :unsure:
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#5 Wandering Hermit

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Posted 28 April 2005 - 01:36 PM

PS I saw Rush about a year ago - we were right in front of the sound board, in the 10th row of an arena, and I could see every facial wrinkle. It was such an amazing experience! We finally got up and sat up in the lawn area for a bit of fresh air and it was like they were a million miles away. Really cool laser show! My husband is a drummer so he was very impressed by Neil's kit...

Stephanie

Cool - last summer I saw them 2 times with my 10 year old son. We drove from Minnesota to Buffalo for the 1st concert and then drove to Montreal for the 2nd show a week later. I first saw them about 23 years ago...

Getting back on topic here.....

Thanks for the feedback. These are the kinds of events I am dreading, and it pisses me off, because I would normally look forward to them, not dread them. The one thing that will probably get me through this is that she understands and sympathizes, being a diabetic, so I don't think it will hurt her feelings if I don't eat. Also, I see her about 5 days/week and the event is over a month away, so I will have a good chance to make sure she understands.

Later this summer I have a wedding (that'll be tough, too) and a Blackbelt camp where they will be serving meals similar to school lunches. That will pretty much require me bringing my own (cold) food to eat and explaining to everyone why. Sigh. I HATE having to share stuff like this with people - I'm very private and reserved and I'd just as soon not have to explain it a million times.

I can see how it is going to be so much easier to just not do stuff. I'm already a bit shy and not very sociable, this is not going to help me come out of my shell AT ALL.

Thank you all for letting me vent! It is so nice to have a place where I know I will be understood. And it helps me to hear you all vent your problems too!
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#6 mela14

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Posted 28 April 2005 - 07:25 PM

I have a baby shower this sunday and in light of how I have been feeling with accidental gluten ingestion I was thinking of not going. then I got a call from one of my best friends and after much conversation i gave into going with her.
She suggested eating a plain grilled chicken or something of that nature.....they just don't get it! we were all together about 2 weeks ago when my hubby threw me a surprise party and even with checking everything and speaking with my waitress..i got sick! I was sick for days. now i am so afraid to eat out because i haven't gotten really good yet at decoding all that they serve at restaraunts...also...i don't trust them. But......you can't hide from living your life.....there is so much that i've missed out on already.
my friend suggested having something right before and then eating a plain salad.... no dressing while there.
let's see how that goes. it's an early shower (12:00pm) and I have about a 2 hour ride before me.
Maybe I'll sneak something in my bag and just happen to go to the bathroom when they are serving the main course! :P
I guess the most important thing is being together and having a few laughs!
good luck and let us know how you make out!
;)
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Mel
mela14@optonline.net

10 years of abdominal problems, incorrectly diagnosed with Endometriosis / suffered 7 surgeries. Total hysterectomy 2 years ago!
Fibromyalgia, Chronic Fatigue, Interstitial Cystitis ,IBS, Migraines, Primary Immune Deficiency to name a few. Finally realizing that food intolerances make them all worse!

#7 tarnalberry

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Posted 28 April 2005 - 08:04 PM

I think you're doing the right thing - not eating the uncertain food. But I also think that the harder it is to discuss that you have a dietary restriction, the harder it's going to be to keep to it. Of course, how we feel about sharing these issues in an intensely personal thing, but I would encourage those who feel great anxiety over discussing that they can't have something to think about whether or not it's possible to change that feeling. It might be. It might not be. But it's something that might make sticking to the diet easier if it's something that can be done. (I really mean no judgement here, I just know that there are things about how we react to situations and how we feel about certain things that we CAN change, so I bring it up as a possible course of investigation.)
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#8 mela14

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Posted 29 April 2005 - 05:15 AM

I agree with you about dicussing it and it's something that we shouldn't be ashamed of. The point that I was making is that even though I discussed it with the waitress and my hubby discussed it with them before throwing the party I still got glutenized. I don't think most servers or chefs really know about gluten and all the precautions needed to take when dealing with someone who is intolerant to it. they also don't see how sick we can get. Unless of course you get a restaruant that caters to people with special dietary needs.
I always tell my server of my needs. There have been times that after they brought me the food I knew something was wrong so I wouldn't eat it. Not wanting to upset the eveneing I would make sure that I ate the plain salad. All in all, it still seems like such gamble to me. Unless I actually see the food, how it is prepared and handled I won't really know until hours later.
A few months ago I ordered grilled chicken in a restaruant. I had discussions with the waiter about my dietary needs. I had the waiter talk with the chef. They assured me everything would be ok. The chicken came back grilled with all types of spices on it. It was also not fresh as they assured me it was. It was one that was previously frozen (with all those preservatives!). i won't go to that retaraunt again!
I guess if you find a restaraunt that you know is safe...it's another story.
I've also had experience with friends that know about my needs. I've gone to dinner at their houses after discussing my restrictions. You won't believe the dinners that were prepared! I got so upset and nervous about one particular dinner that I finally just came out and told my friend that I could not eat her food. I ran home....a few doors away and was able to quickly get some chicken. the evening was saved and we had fun anyway. In the end she apologized for not understanding enough. Although we had discussed making PLAIN porkchops she thought that she would marinate them in bottled dressing for flavor. Not knowing that that ingredients in the bottle were like poison to me. when I told her that I couldn't have the marinate she proceeded to wash it off! she proudly told me that it had been marinating ALL day! And this is someone who knew all about my dietary challenges as I had been reporting back to her almost daily.
In the end we have to be our own detectives.......and are responsible for ourselves.
Again, it's not something that we should be ashamed of though. we just have to scrutinze everything we eat and make sure we know where it comes from.Taking something along with me in my bag is something that I'll do....just in case there is nothing there that I am comfortable eating...especially since it is hours from home!
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Mel
mela14@optonline.net

10 years of abdominal problems, incorrectly diagnosed with Endometriosis / suffered 7 surgeries. Total hysterectomy 2 years ago!
Fibromyalgia, Chronic Fatigue, Interstitial Cystitis ,IBS, Migraines, Primary Immune Deficiency to name a few. Finally realizing that food intolerances make them all worse!

#9 pogirl1786

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Posted 29 April 2005 - 10:44 AM

I know exactly how all of ya'll feel. A friend of mine invited me to his prom recently, and the group of people we were going with were really good about going to a place for dinner where I felt comfortable. Outback Steakhouse was what I suggested because it's where I've always felt the most comfortable, and most of the group seemed to agree that it would be a good place to go to. However, a few weeks later two girls in the prom group heard about where we were going, and decided that they didn't like Outback and wanted to go somewhere Italian, which basically means a Celiac will be eating a plain salad without croutons. A couple of my friends got really mad about them changing the restaurant plans without asking me or considering where I could go. It was really disappointing because I thought that the group was going to be great, considering how understanding they were originally being. It was so frustrating when I heard some of the stuff they said about Celiac. One guy said, "My friend has Celiac- and he can eat whereever he wants." Another girl said, "Can't she just drink water and eat a salad?" Another guy said, "We can't just go to where one person wants to go if more people in the group don't want to go there." I have a disease! Do they think that I'm using this as an excuse to get my way on where to eat? Trust me, if I could eat pasta and all that great Italian food- I would!! I can't believe some of them would be so insensitive. One of them suggested that he'd bring me Outback take-out while they went to some fancy Italian place. I don't want to make my date go through the drive-thru and lug in my food at whatever restaurant they want while I'm all dressed up and supposed to be enjoying myself. Maybe I'm overreacting a bit, but it just really offended me that they would be so inconsiderate. I've had Celiac for over a year, and they were acting like they knew more about where I could eat and how it affected me than I do. Even if the one guy's friend does have Celiac, it affects people in different ways. I tried to explain to them that even if a restaurant says they have some gluten free things on the menu, that doesn't mean that there won't be cross-contamination. I tried explaining to them that I already wasn't completely comfortable eating out anywhere, considering cross-contamination and the fast reactions I get, and that Outback is a place where I eat out a lot at, and a place that I'm really comfortable at, but they just said I was being difficult. It's so frustrating to have to worry about this when the social event is supposed to be for enjoyment. My prom group ended up splitting up. The only positive spin on all of the annoyance some of the persons caused, is that it really showed me who my true friends were- the people who stood up for me and were totally understanding of my worries about eating out and my disease. People just don't understand sometimes. My whole point of my rambling was just to say that I totally sympathize with everyone about social events and food being such an issue. It's nice to have people who are dealing with the same thing I am. :)
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#10 ianm

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Posted 29 April 2005 - 02:04 PM

You find out real quick who your REAL friends are with this disease. Mel, my ex would make marinated or breaded pork chops and chicken and then say "You can just scrape it off or wash it off." :angry: :angry: And she still wonders why she's an ex and not a Mrs. anymore. :lol: A lot of people just don't get it but I have met some that really go out of their way to accomodate my needs. Sometimes they don't quite get it right but at least they made the effort and that's what really matters.
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If all the world is indeed a stage and we are merely players then will someone give me the script because I have no f!@#$%^ clue as to what is going on!

What does not kill you makes you stronger.
Nobody cares about losers and quitters never win. If you fail with the cowards then what's the message you send?
Can't get it right, no matter what I do. Might as well be me and keep fu@$ing up for you. - Brian Thomas (Halloween, the greatest metal band ever!)

Ian Moore. Self diagnosed at 36 because the doctors were clueless.
Started low-carb diet early 2004, felt better but not totally gluten-free. Went 100% gluten-free early 2005 and life has never been better.

#11 plantime

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Posted 29 April 2005 - 04:12 PM

Yes, you do find out real fast who cares about you and who doesn't. Last Friday, our car was broke down, and my son's truck broke down, so his girlfriend's grandma came and rescued us and took me so I could get groceries. She is a wonderful lady, I enjoyed being with her, but when her and my son's girlfriend decided, without asking anyone else, that we would all have lunch at Pizza Hut, I don't mind telling you how my stomach just clenched! For one thing, with car repairs on the agenda, I had no money for eatouts, for another, Pizza Hut is not a safe place for a celiac! My daughter was with me when the decision was made, and she invaded my privacy in the bathroom to ask me what was I going to do, did I want her to say something to the girlfriend, she was quite worried about me! I asked her if she had ever been in the one they were talking about, since I had not been, did they have a salad bar, if so I would check that out or just get a drink only. "Grandma" paid for it all, turned out she had a half-price coupon, and I had a small salad, and everything was all right. I was scared, though, and I really appreceiated that my daughter was concerned for me. I have found lately that if I just stay calm, things will work out. Even if I had to skip a meal, it was not the end of the world.
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#12 junevarn

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Posted 30 April 2005 - 06:46 AM

Its really upsetting when people are insensitive to your health problems. I went to a birthday party recently where the hostess knew about my dietary needs. Its a good thing that I ate before I went there though and brought some nuts with me.
The only thing I could eat there were some cooked carrots that they put aside and some plain rice. I acted like I didn't care but inside I was a little upset.

Now whenever I go to someone's house I bring my own food and eat before I go there as well.

June
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#13 hsd1203

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Posted 30 April 2005 - 09:51 AM

this really is a tricky thing...

with my in laws, my mother in law has a list of exact brands and makes special shopping trips just for me (while on the phone with me :) before dh and I come visit. she really has adjusted well.

dinner out is tricky but after a couple of times of me getting sick on what should have been safe food at "regular" restraunts, dh has been supportive of now going only to places with gluten-free menus or small independent places where they actually know what is in their food.

as for friends, the ones that listen very well to what I can and can't eat, and don't get offended by me asking ridiculous questions about how they prepared their food (of which there are really only 2-3) and my gluten-free friends (love going to their house for dinner!!!) are the only ones that I will eat their cooking. everyone else, unless I've spent time with them explaining, I will not eat what they made. In that case, I'll try to take a dish with me after explaining that I know that they are busy preparing for a party and I dont want to "put them out" having to do extra accomodate me. If not, I'll go and say I just ate (my least favorite option, b/c I hate the stares and the "you're so skinny eat something" comments, as though it is ok to say this where it would never be ok to make the opposite comment to someone who happened to be overweight). My mom (gluten-free for 25 years) has been really supportive in this one (with an occasional kick in the butt) in making me go to things and still have fun regardless of food.

it is tricky and I'm still learning... but these things have helped so far!
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#14 mela14

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Posted 01 May 2005 - 06:15 PM

To all of you that have good friends that are accomodating and helpful....that's great! I went to my best friends sister's baby shower today. It was a 2 hour drive and I picked another friend up along the way. they both know about my food intolerances and are always so helpful. This party was at a catering hall so I called the place ahead of time and my friend discussed my dietary needs with the banquet manager. They assured me they were making everything according to what my friend explained my restrictions were.
I left early this morning for the party so I took a bagful of raw nuts and a banana in my bag. In light of all the mishaps I have been having I wanted to be real careful. I can't afford to keep getting sick the way I have been. I takes days out of me and gets me totally depressed!
anway, the brunch looked great but of course I did not have anything. I had water when they made the toast as I did not want to even sip the champagne. The waiter knew of my needs and brought out a beautiful salad of baby greens with tomatoes...no dressing but a fresh bottle of olive oil on the side.I was so excited because that's exactly what I do at home! He thten told me they were grilling my plain chicken breast (naked) and grilling some plain eggplant. Great! when it arrived it looked good. I was finally able to relax and enjoy my meal. I knew it was fresh...no preservatives......they assured me and it looked like a fresh piece. I ate every last piece and was enjoying a girls afternoon. My friend came over and saw that I was eating....she was so nervous about the food for me but felt better once she saw that they had gone the extra mile. She then told me that she had a bad of fresh salad in her mother's purse just in case they had dressing on my salad. I thought that was so sweet.
then it hit........2o minutes after I finished eating I started to feel light head, disoriented and racy. My heart was beating fast and then the muscles in my legs started to feel such pain. I couldn't even stand up. I felt that I had swallowed poison. The typical gluten feeling! then the stomach pain started. Of course I got upset but didn't want them to see. My other friend who was sitting next to me saw that I didn't look good and asked what was going on. She even offered to go home right away. I hung in there and stayed another half hour....
while we were driving home the friend that threw the party called me on my cell to check on us and make sure we had a nice time. Seeing all that she went through I didn't want her to feel bad so I didn't say anything. I told her the party was fun and it was nice being all together.
What happened?
I'm sure I must have gotten cross contaminated.......They had so many dishes....all of which had some sort of flour. It's possible that the chicken breast was cut or pounded on the same table as the chicken rollatini, or eggplant parmigiana, or chicken francese, etc.....
My gut is now bloated and sore and I still feel weird.the muscle pain is better but still achy.........Maybe becasue it was just a little bit this won't be as bad as a full blown "glutenization"....I'm just so tired.............
I have 2 communions....one graduation, one 70th birthday...all within a month.
I am so happy that I finally know what is going on.....but it is so hard to get it right. I think that the only smart thing to do at the next party is not eat! I think it's different eating at someones house that you know....but with a catering hall....it is so hard to make sure that they don't cross contaminate. what a nightmare. :(
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Mel
mela14@optonline.net

10 years of abdominal problems, incorrectly diagnosed with Endometriosis / suffered 7 surgeries. Total hysterectomy 2 years ago!
Fibromyalgia, Chronic Fatigue, Interstitial Cystitis ,IBS, Migraines, Primary Immune Deficiency to name a few. Finally realizing that food intolerances make them all worse!

#15 casnco

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Posted 02 May 2005 - 02:15 AM

Man! I just walked in those shoes. Only I wasn't smart enough to not eat what my family had so thoughtfully prepaired for me. They told me they made one of my favorite desserts with rice, mandrine oranges, cherries, whip cream. yummy, NOT!
The rice turned out to be pasta!!! Luckily I discovered this after about 4 bites. I freaked out. Went to the cook and asked if she was sure it was rice and she said "Oh, rice or pasta, something like that." I made a beline to the bathroom for a session of purging. (Gross, I know) I was in there a long time. Then I bolused water the rest of the day and most of the next day. My reaction wasn't the worst ever. Tired w/body aches and constipation followed by the loosening of the stool. No DH noted yet, it has been a week.
I have decided not to eat anywhere I don't participate in the preparation of the food.
My mom was even trying to help me out by making home made potato salad. One of my favorites and she doesn't do it anymore. She put the boiled potatoes on a tray she had made chocolate chip cookies on and she had not washed it. So now the potatoes are contaminated. Then I started looking around her kitchen and I ealized for the first time in my 40 some years, my mom is a serface cleaner, there was flour all over the lid to the sugar container. Needless to say I probably will not eat at mom's again. No matter what.
I am going to a wedding this summer and have decided to tell the bride not to include me in the count for the dinner. I will eat before I go to the reception and arrive after everyone else has eaten and just enjoy the family and music.
If you go to the brunch I would just eat before you go and realize you are going for friendship not food. Maybe you could put something that looks safe on your plate and just play with it, women do that all the time and never really eat anything. Good luck. I hope you can come to terms with what you need to do. This is a tough disease to work around but it sure is nice knowing why we felt so awful before diagnosis.
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