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angel42

The Girl Who Cried "not Glutened"

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Hi,

I don't know if this has ever happened to anyone else. We had a pot luck at work. My friends at work were incredibly nice about my Celiac and one of the girls even used gluten-free pasta for her mac and cheese. In spite of all this I got very sick from lunch. Since people had gone to so much trouble not to gluten me, I didn't want to make people feel bad but since I was quite obviously very sick I told them I must be getting the stomach bug that was going around. The people at work are very nice but I know that if I told people they would all get extremely defensive and insist it certainly was not THEM who glutened me since noone wants to admit they got someone so sick. So I was sick for a few days and now I feel better.

So I get back to my cube after lunch yesterday and they say "Guess what! Since the last pot luck went so well we are having ANOTHER ONE!" I'm sure I dug my own grave on this one but even so, I really don't want to get sick again.

Any advice?

Thanks!!

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Wow that is a hard one. I think I would explain to them that "although you were very happy about the effort they went through last time" that you've recently been getting sick off from other foods and until you figure out if you are also having a reaction to soy, milk, or nuts, corn or something else then you would rather not eat anything unless you make it at home.

I'd make it clear that they did a great job, but it seems as though every time you eat lately you don't feel well, so you probably won't be eating much that's not prepared by you until you can rule out other foods. Explain to them that this could take a year or more, because you have to eliminate certain foods for certain amounts of time, but you also have to be very careful about coming into contact with other foods.

Then if a year later someone just happens to make a connection that you never cut any foods out just explain that you decided to abandon that because it seemed as though you may just have come in contact with gluten somewhere.

I'd also welcome them to do a potluck still as long as they don't mind if you just bring your own food just to be sure. Let them know that they don't have to make special meals for you because right now you'd prefer to play it safe.

Good Luck and I hope it all works out for you!!


~~Angie~~

DX'd With Narcolepsy In 1995

Dx'ed With Celiac On 12-18-06

Positive Biopsy On 2-1-07

DX'd With Pernicious Anemia 4-24-07

Daughter Has DH, so I suspect she also has Celiac!!

"If Alcoholism was Celiac Disease they would make us drink ourselves into kidney failure before they would admit we had the disease"

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I second Angie's advice.

I think it's awesome that they attempted to suit your dietary circumstances. But people who aren't directly affected by this don't think about reading the labels on the spices they use, etc... Then there's the whole CC issue...the list goes on and on.

Personally, I'm still at the stage where if I haven't personally made it myself or I don't know the owner of the restaurant (who so graciously let me into their storeroom to read all ingredients) I won't eat it. It's just not worth getting sick.

But high five to your coworkers for making an enthusiastic attempt, instead of scoffing at you. Take Angie's advice and ask to bring your own food next time!

Courtney


Courtney - 25

Columbia, SC

Gluten-free since July 8, 2006

Casein-free since October 16, 2006

Went six weeks, and fell back into a deliciously painful world of cheese.

Casein-free (again and for serious this time) December 11, 2006

Stupid cheese addiction....2/07

Dx Hypothyroid in 1993

Dx Gluten & Casein Sensitive through Enterolab 10/06

Dx Adrenal *Exhaustion* 2/07

Originally from WI, I am still in denial over my newfound casein intolerance. I fear I will not be allowed back into the state if I can no longer eat cheese and drink milk. This could pose some trouble over holidays when I wish to visit my family. It also poses a problem involving the severe rage I feel when I have to throw away somebody's unfinished cheese sticks. That is so wrong.

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I second everyone's great advice!

I can't help wondering about the mac'n'cheese. I wonder how she made the cheese sauce? You might tell her that it was wonderful and could she give you the recipe so you could make it yourself? If she used flour instead of cornstarch to make the cheese sauce, that might be your answer right there. Of course, maybe I'm barking up the wrong tree...

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All great advice already. It's great that you co-workers are trying to help and understand your problem. Good for them.

It's really hard to know what happened. It all could have gluten free ingredients, but cut on a contaminated board, counters, or who knows. Really hard when you don't see it made.

Also it's hard for non Celiacs to think that a breaded knife might have been in the cheese that she used, or any number of things.

Good luck staying healthy, and yes, bring your own dish and stick to that for now.


Shirley

[save the Earth, It's the only planet with chocolate and wine.

It isn't about waiting for the storm to pass...

It's about learning to dance in the rain.

Gluten free since 1989

West Kootenay.... British Columbia

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One thing that seems most likely to me is CC. If the pasta was cooked in a pasta cooker, I wouldn't doubt for a moment that there was a few bits of wheat pasta stuck in the inner pot. Those holes are pasta magnets, and I haven't ever seen anyone I know actually get them clean enough to pass a simple visual inspection.

I do like the suggestion to ask for the recipe. You might ask what brand of pasta they used, and say it can be tough to get it to come out right, especially the first time making it. Then ask how they cooked it - double boiler, pasta cooker, or an ordinary pot. Obviously, this isn't going to do much for solving the second pot luck though.

I think if it were me, I might respond to their second pot luck comment with something like "oh, you guys went to so much trouble just for me, I just couldn't put any of you through that again. It was so nice, and must have taken hours to scrub down all your utensils so you wouldn't get gluten in the food. I don't feel left out around here, honest! So I'm perfectly comfortable bringing something for myself. That way you can all relax and not worry about gluten next time.". Of course, you know the folks you work with better than I do, so maybe this won't go over with them.

I was sorta in an opposite situation once, before I went gluten-free. I decided to make my co-workers a big lasagna for lunch. Afterward, someone said they had a weird feeling in their stomach, and before I knew it, practically everybody started saying they thought my lasagna was making them ill! There was plenty left over, and not a single person wanted any of it. Needless to say, I never cooked for them again. But I did enjoy the remainder of the lasagna all that week :)


A spherical meteorite 10 km in diameter traveling at 20 km/s has the kinetic energy equal to the calories in 550,000,000,000,000,000 Twinkies.

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You are lucky they were so willing to try!

It jsut seems like you are going to find yourself telling lie after lie - trying to remember what you said last time, etc.

I don't know how long you have been on the diet, but you could try the approach that you are still learning about cross contamination issues -

like wooden spoons,

colanders,

hidden glutens, etc.

Then, you could offer to make a dish and when it comes to the actual event, stick to your dish without tasting the others.

It's really difficult for people to grasp the contamination factor.

When I learned that my old toaster was making me sick, that was the story that stuck with my co-workers.

They understand that even though I was eating gluten-free foods something as small as a crumb in a toaster was making me very ill.

I often feel bad when I'm unable to try something that a co-worker made and wants to share, but that story helps them "get it".

Good luck !


Amy

Gluten Free since 4/05 - adult onset

Symptoms for 4+ years prior

Immediate family tests negative

No Known family members w/ celiac disease

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You guys have all made wonderful suggestions. Pot Luck Update:

I have been looking on Epicurious.com for flourless recipes since ever since I went gluten-free my mother in law gives me grief about dessert every time I see her (I used to bake constantly and she refuses to eat modified recipes) I found a recipe for Flourless Chocolate cake and I guess I was talking about making it and people overheard. So they all signed me up to bring, you guessed it, the flourless chocolate cake. :) I am trying to figure out a way to bypass lunch entirely and go straight to my dessert. I think that AmyBeth is right about the danger of telling lie upon lie. I am very grateful that my coworkers care enough about me to attempt to bring things I can actually eat. I don't blame them. I really think if you are not Celiac you really just don't get it. It's not their fault. I think it's kind of sad that these people take more trouble to make things I can actually eat than my own mother in law who acts like I have taken up some fad diet.

We work in NYC and it's now restaurant week in Manhattan. Everyone from work is going to several different restaurants and of course I had to say that I wasn't going. It's just so hard to keep saying no to everything all the time. I honestly think that although people understand what Celiac is they don't understand why eating out is not fun for me. I just want to put up a sign on my cube saying "Please don't take this personally but stop constantly inviting me to restaurants" I don't think that would go over well. :)

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I think it's time for the guilty fess-up. The "I really appreciate all you guys try to do, and it means a lot, but I got sick, and I didn't know how to tell you. I'd just rather not risk the contamination; and it can come from so many many places. I'm sorry I didn't tell you, I just didn't want to disappoint you after you guys tried so hard, and I really appreciated the effort."

I had to do much the same thing in the past and it's *hard*, but you do it, because your health is most important.


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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Awww. Your coworkers are so sweet. I was actually diagnosed with Celiac after one of my cients suggested it to me. People have a hard time relating to topics so very foreign to them. Even back before I was actually diagnosed, I would think about the 'crazy' stories of wheat making anyone sick. This information was so ridiculous. My point being, who cares what anyone will think of you? They do not have to answer to the pain and exhaustion that you do at the end of the day. My coworkers have finally stopped asking me if I want Chinese food or pizza. Now, they automatically order me a salad if it's in question, with vinegar and oil. Yes, this sucks. And as I witness their super yummy cheezy pizza, I think of the days or weeks of excrutiating pain associated with any of that. My friends started not calling during the tough times. Who cares? If these people can't understand that you don't wish to put your well-being in their hands, that is their problem, not yours!! Honesty goes a long way, my friend!! Just tell them "No thanks."


---Monica

diagnosed November 2006

before celiac diagnosis:

four abdominal surgeries, six MRIs, three CT scans, five emergency room visits, 40-50 prescribed meds, 30 different doctors

currently:

helping others with celiac

researching celiac lifestyle improvements

spreading information about food allergies and celiac to as many people as possible

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I also agree with Angie's advice. It was very nice to do that for you, but they probably do not understand the complete diet either, the CC, and the small places gluten pops up in that you would never expect to find it, we struggle with that day after day sometimes.

I wish my coworkers tried to help me, one made me the birthday cupcakes, but everyone else just pushes cakes, cookies in my face and then laughs and says oh you have the best diet....


~~~~Gluten Free since 9/2004~~~~~~

Friends may come and go but Sillies are Forever!!!!!!!

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I sympathize on the pizza and chinese food. Yesterday my mom invited me out to, get this, The international house of PANCAKES. PANCAKES! Then proceeded to be completely offended when I would not go. Then my dad calls me up and tells me they feel I am being overly restrictive and is all this really necessary. I asked him if he does not remember how sick I used to be and he was all "yeah, but" I get the feeling all of the people in my life just want me to be "normal" and knock off this whole gluten-free thing because it's too much of a disruption to their life. My parents don't like having a Celiac daughter and my friends don't like that I never come out to dinner anymore.

I tried to get people from work to go to a gluten-free place in Manhattan (rissoteria, supposed to be v good) You can imagine the deafening silence I am getting as a reply. This is annoying since they invite me out to eat at least once a week and then act all offended when I can't go, insisting there has to be something I can eat, even at italian places where it's all pasta and breading and gluteny sauces. I am so sick of feeling like I am blowing people off cuz I don't really feel like getting violently ill. I will try and tell people how sick I got but I know it will not end well. Wish me luck.

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It really is hard to grasp the CC issue. We had guests over Saturday night and one of them asked if it was OK if he put the Stoned Wheat Thins next to my gluten-free crackers. I had to explain no. I was really happy that he asked though.

Sometimes an easy way to explain it, is that like an allergy, even a teeny bit can make you really sick. For example, I say some people can't even be in the same room with peanuts. I say I'm that sensitive.

One of my professors invited my dh and I over for dinner and was aking me how I want to do it. I said it would be best if I brought the main dish. She replied that wasn't much of an invite but that she didn't want to make me sick. I explained to her it's about the COMPANY, not the food!

It's SO nice that they went out of their way for you, but just explain that it's VERY diificult. Plus, your gluten-free food will probably blow them away. Make a Tinkyada lasagne. :P


***************************

Beverly

Gluten free since 2005

In the midst of winter, I found there was within me an invincible summer.

Albert Careb

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