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I'm Miffed - Need Advice


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49 replies to this topic

#1 Newbee

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Posted 07 September 2011 - 01:51 PM

My brother is getting married for the 2nd time in a couple of weeks. They are planning an informal dinner after the wedding rehearsal for family (parents, siblings, and my brother's daughter). His fiancee contacted me asking me to choose between 3 restaurants that had a gluten free option as she wanted to make sure I could eat something. I told them I would be contacting the restaurants to see what their practices in the kitchen are so I could see if they were truely safe to eat at. I explained that my food can not come into contact with food that has gluten because it could contaminate my food and make me sick. There was only 1 place that seemed marginally safe so asked if we could do that one. They then found out it was not kid friendly and said we couldn't go there and asked me to choose again. I explained the other options were not safe and asked if I could have other options. They sent back an email to me saying that they had picked a restaurant that is not gluten free and checked with the staff and it was ok for me to bring in my own food. The email really upset me and made me angry! I really don't want to go at all now. I don't think I would have been upset if they didn't ask me to begin with. I wasn't planning to request anything but I feel like they should follow through. As I'm traveling to go to this wedding I expect I'll have to bring something cold like peanut butter and rice cakes while the rest of them eat something hot and yummy. I think it was just too difficult to explore any other options even though they have us driving all over Chicago and the suburbs for all the stuff they have lined up for the wedding.

Any thoughts? Am I being irrational? I'm sure if things were reversed my brother would be having a fit about his needs. He's not a nice person.
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#2 StephanieL

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Posted 07 September 2011 - 02:00 PM

It does stink that they asked but then fell short. I would think offering 3 choices was a good gesture and if those don't work, them being sure they are okay with you bring food is and okay option. They tried (though maybe not as hard as you would like) but it is more than most people would have done.

I think it is just times like these (special events) that it seems to stick out more and seem more hurtful.

I would go and try to enjoy the company. Chicago is HUGE and there should be someplace you can find to eat prior or after the event that will be about to work with you.
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#3 GFreeMO

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Posted 07 September 2011 - 02:08 PM

Honestly, you are lucky that they even considered going to a place that had gluten free options. Most people are so focused on the wedding that that wouldn't have crossed their minds. It's unfortunate but this is what usually happens when you are the odd man out.

Could you bring a thermous with you to keep something hot? You could bring a electric frying pan to use in the hotel. I would eat before hand and just bring something in a thermous or stick a snack in my purse. If you are driving and not flying this will be easy. You can bring your food and snacks with you.

I wouldnt want to chance getting sick at an of the resturants with gluten free menus. CC is huge with those gluten free menus and you don't want to be sick while you are out of town.
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#4 Jestgar

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Posted 07 September 2011 - 02:10 PM

It's their wedding, they tried to accommodate you, it didn't work out, they don't want you getting sick, so they picked a place that would let you bring your own food. It sounds like they're being more than reasonable. Find something tasty to bring with you and go have fun without fear of being ill.

The restaurant should be able to microwave anything you bring, or put it on one of their plates and stick it under the broiler or whatever.
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#5 Newbee

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Posted 07 September 2011 - 02:17 PM

I'm actually taking the train and will be arriving early in the morning. I'll be taking the bus and other trains to get around. So I really think only cold food is going to be an option (and probably the same thing I'm bring to eat for lunch). I'm bring some thai kitchen rice noodle carts which I just need to add water and can microwave. That's not going to work in a restaurant. I've been avoiding being at restaurants since I've been diagnosed. I don't feel much different about this. They sent out an email to all the family members invited and said it wasn't about the food but a chance to get together and meet each other. I'm sure they said that for my benefit. People think if they 'spin' something different then it is ok. I think that's a bunch of BS. If it isn't about the food then let's meet somewhere that doesn't have food.
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#6 captaincrab55

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Posted 07 September 2011 - 02:29 PM

It's family and life is so short... Be safe with your food and go with the flow.... Hopefully your brother will never get Celiac... Take Care...
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I'm a New Man Without GLUTEN!

#7 captaincrab55

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Posted 07 September 2011 - 02:31 PM

I would go a week without food to have my brother alive today...
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I'm a New Man Without GLUTEN!

#8 Newbee

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Posted 07 September 2011 - 02:40 PM

My brother has yet to be tested for celiac so he might have it. I believe in karma, so who knows.
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#9 Skylark

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Posted 07 September 2011 - 02:46 PM

How do you eat out if you're that horribly sensitive to CC? I have to wonder if you're better off bringing your own food anyway. It would really be a pain to get glutened the night before your brother's wedding.

Also, with a wedding in two weeks, they're probably going crazy with all the details. What they did wasn't very considerate, but I suspect they felt pressured to get the reservations out of the way.
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#10 ravenwoodglass

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Posted 07 September 2011 - 02:55 PM

I was very fearful of getting glutened at my DD's wedding even though the caterer said the dinner would be gluten free. I tucked a hot plate and a small pan, a couple cans of Dinty Moore Beef Stew, fruit and nuts and some gluten-free bread and pnut butter in my suitcase. I ate before the event and then ate a plain fruit salad at the reception and had another snack after I got back to the hotel. It is the event and the people that are the most important. They did try to accomodate you but it didn't work out. Do go and have a good time enjoying the event and the company. That is what is the most important part of the day.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#11 kwylee

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Posted 07 September 2011 - 02:57 PM

The last place that I want to chance being cc'd is traveling, and at a special event to boot. It would have been wrong for them to be miffed with you if you insisted on bringing your own food on their special day, not understanding how important it is for you to avoid trace gluten. I feel that you are lucky to have family that did what they could to accomodate you.
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K Wylee

Gluten Intolerant, Positive test, June 2010
Casein sensitivity, Positive test, June 2010
Reactive to soy, most processed foods & preservatives, June 2010

#12 ravenwoodglass

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Posted 07 September 2011 - 03:01 PM

My brother has yet to be tested for celiac so he might have it. I believe in karma, so who knows.


I do hope you go and have a good time. I just noticed you joined the forum on the 39th anniversary of my losing my brother. You never know what the future will bring or how long he will be with you. Share in his joy at the event. It will be well worth the inconvience of your having to bring your own food.
  • 1
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#13 Monklady123

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Posted 07 September 2011 - 03:04 PM

Since the restaurant said it would be okay to bring in your own food then you could bring all sorts of things that would only have to be heated in the microwave. (I'd check that first though, with the restaurant, just to be sure.)

Personally, I'd order a drink and a salad and enjoy the company. But that's just me... I hate being fussed over. :)
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#14 CRashster

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Posted 07 September 2011 - 03:27 PM

This is how your life is from now on. You can either let this disease run your life or you can eat beforehand and have a good time. You're taking it personally because you feel that if they wanted you there, they would have it somewhere more gluten-free friendly. It doesn't sound like they are. But, if I wanted to go, I wouldn't let this stop me.
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#15 Newbee

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Posted 07 September 2011 - 03:47 PM

I don't know how sensitive I am to CC, I'm only less than 2 months into the gluten-free diet. I'm just trying to do what I thought all celiacs were supposed to do (avoid gluten and possible CC). Why is considered such a great thing if someone gives a little effort but the end result is the same? Doesn't anyone else feel we've been conditioned to not expect anything? So, wow if any effort is given at all that's a great thing. Before I knew I had celiac when I had parties at my house I made sure everyone had something they could eat. I had a friend who was vegetarian and made sure to make a dish just for her because I thought how awful to have a party and leave someone without anything to eat. Maybe it is just me . . .
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