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      Frequently Asked Questions About Celiac Disease   09/30/2015

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I'm Miffed - Need Advice
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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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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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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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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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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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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 would go a week without food to have my brother alive today...

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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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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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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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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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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.

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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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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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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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Newbee, I think the difference between having a dish for a vegetarian and having safe food for someone with a food intolerance or allergy is that a vegetarian isn't going to get sick if there's a mistake in the kitchen. Vegetarianism is a far easier restriction to cook for and understand sometimes than gluten-free.

Like others have said, you have a choice. You can put up with the restaurant they've chosen, be pleased with their attempt to accommodate your needs and have a good evening. Or you can stay home and be bitter about it. A wedding should be a time of joy. Is holding a grudge about the food available during one evening really worth it?

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You sound really bitter. Also, the karma comment was really mean. While Celiac isn't the end of the world, I would never wish it on someone even as a joke.

This is all new to you. You will learn to navigate as time goes on. Maybe you are too new to try eating out or are to uncomfortable to try taking food but that is the reality. If you think getting sick is worth the risk when people "try" that is up to you. Your friend, the vegetarian, is lucky to have a great friend who did that. My Mother for YEARS made DH and I special meals weekly as we were veg and the rest of the family wasn't. However, I will NOT let her cook for my food allergic/Celiac kids. There is a difference between dining preferences and necessities!

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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 . . .

Sadly, it is just you... I have some awesome friends, and I have some woefully insensitive ones.

As far as CC, it sounds like you were asking unrealistic things of the restaurants. Most restaurants do not use separate grills, pots and pans, or necessarily have dedicated preparation areas for gluten-free food. They should make sure things are clean and that there aren't bread crumbs in your food. Gluten sensitivity among celiacs varies considerably. As long as the restaurant is taking reasonable care by keeping food preparation surfaces clean, cooking gluten-free food in clean pots, and using clean spoons and spatulas for gluten-free food, the food should stay below 20 ppm. If your personal level of sensitivity is such that you need food cooked on surfaces that have never touched gluten, you really can't be eating in restaurants at all.

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What do other celiacs do? I read at restaurants you are supposed to ask the questions I asked. I thought I was doing what I was supposed to do.

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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 . . .

No, it's not just you. Everybody's angry for the first month or so. It isn't fair. You have to read all of those labels and cook more. Grocery shopping is (at first) a nightmare. You have to plan, pack, think, you can't use processed foods. You're whole world gets set upside down, and all of a sudden your focus has to be on you, and how you'll cope with this disease.

It's hard to realize now, when you are angry about it all, but your brother and his fiance were actually being exceptionally considerate. He must love you to bits!

As for planning for people with special dietary needs, I think it's improving for the most part, and yes, I always made do for anyone kosher or vegetarian. But those preferences are well known, celiac is not that well known. And I would have CC'd someone with celiac disease before I knew about it.

You can still have an uncut sweet potato or baked potato if you call that restaurant in advance, and see if you feel comfortable about anything else. (Like just green salad and you bring your own dressing.)

Wish you well, hope you have a good time and that your brother found the right one.

I was only one of four people invited to my brother's wedding. I wouldn't have missed it for gluten, it isn't about that.

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We all have to establish our levels of sensitivity to minute amounts of gluten. We do this by experience. It is really difficult in the first six months trying to eat out because of all the pitfalls and possible lurking places of gluten. And it is hard to figure out who to talk to and what questions to ask - this also comes from experience and depends on the type of place you are eating at. It is much easier to avoid cross-contamination at higher end restaurants than places like Applebees :unsure: and in those places you can often even talk to the chef who is preparing your meal. Sometimes you can establish a dialogue with your waitperson who will act as a go between, between you and the chef, to make sure your food is safe. Some places the manager will take control of overseeing the preparation of your food. As ravenwood said, some places will even heat up your own food for you and place it on one of their plates. Calling in advance is always the best way to go and, if you have control over it, eating at off-peak times helps ensure attention to your requests because they have the time to take care. There is a lot of pressure in most commercial kitchens during the busy times, and you will get things like the server chucking croutons on your salad automatically, as one example.

You have made a good start and have one experience now to store in your memory bank. Really, eating beforehand/taking food with you is not that big a deal and is the safest way until you are further along in the diet and have more experience handling these situations. I didn't try eating out until I was 8 months into the diet. I just didn't want to risk it. I have only been glutened at a restaurant once and I partly blame myself for that. :)

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I usually go to places that at least have a gluten-free menu available. I just had breakfast at Eat and Park. They have a gluten-free menu. I talked to the server about the fact that I have celiac, so that usually clues them in to treat my food differently. She offered to give me a gluten-free bun in place of the toast. I told her it couldn't be toasted in a toaster, but could be broiled in an oven on some foil or even cut and put on the grill/stove where they made my omelet. I don't know what they chose to do. A lot of it is a leap of faith on my part.

In regards to your dilemma, I'd be hurt, too, that my food needs were too complicated for them. Would I go? I'm not sure. I'm still 6 months in and very bitter about the whole thing. I KNOW this about myself. I also know when situations are going to be too much for me to handle. I've missed many a picnic this summer due to this miserable disease. Does it bother me that I stayed home instead of going? Absolutely NOT! I am doing what I have to do to keep as positive frame of mind as I can. And that means not putting myself in situations like that. I know people SAY it's about getting together with friends and family, but, really, it's about food. Picnics are about FOOD. Holiday parties are about FOOD. Do I go to company holiday parties because I can't wait to chat it up with my DH's co-workers? No. Hell no. I go because it's free food. Perhaps I'm still too food centric. Doesn't matter what it is, really. What it boils down to is whether I'll be miserable or happy.

I realize this is very self-absorbed, but it is what it is. Life is too short for me to put myself in uncomfortable situations. I guess in the end, only you can decide if it's worth the effort/emotional cost to you.

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In a city like Chicago there must be at least one gluten-free place that has take-out or delivery. Find it and make a call.

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I usually go to places that at least have a gluten-free menu available. I just had breakfast at Eat and Park. They have a gluten-free menu. I talked to the server about the fact that I have celiac, so that usually clues them in to treat my food differently. She offered to give me a gluten-free bun in place of the toast. I told her it couldn't be toasted in a toaster, but could be broiled in an oven on some foil or even cut and put on the grill/stove where they made my omelet. I don't know what they chose to do. A lot of it is a leap of faith on my part.

In regards to your dilemma, I'd be hurt, too, that my food needs were too complicated for them. Would I go? I'm not sure. I'm still 6 months in and very bitter about the whole thing. I KNOW this about myself. I also know when situations are going to be too much for me to handle. I've missed many a picnic this summer due to this miserable disease. Does it bother me that I stayed home instead of going? Absolutely NOT! I am doing what I have to do to keep as positive frame of mind as I can. And that means not putting myself in situations like that. I know people SAY it's about getting together with friends and family, but, really, it's about food. Picnics are about FOOD. Holiday parties are about FOOD. Do I go to company holiday parties because I can't wait to chat it up with my DH's co-workers? No. Hell no. I go because it's free food. Perhaps I'm still too food centric. Doesn't matter what it is, really. What it boils down to is whether I'll be miserable or happy.

I realize this is very self-absorbed, but it is what it is. Life is too short for me to put myself in uncomfortable situations. I guess in the end, only you can decide if it's worth the effort/emotional cost to you.

Thank you for your response! I was beginning to think everyone is against me. I'm not a bad person, but this situation has made me upset whether it should or not. It is times like these that I find this disease difficult to deal with. The thought of eating peanut butter and rice cakes while everyone else eats pizza is depressing to me. I'm sure I'll get used to it eventually, but hard starting out.

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Thank you for your response! I was beginning to think everyone is against me. I'm not a bad person, but this situation has made me upset whether it should or not. It is times like these that I find this disease difficult to deal with. The thought of eating peanut butter and rice cakes while everyone else eats pizza is depressing to me. I'm sure I'll get used to it eventually, but hard starting out.

It certainly IS a difficult disease to deal with, especially at first, until it becomes second nature. Believe me - I had my share of bitter moments starting out myself! Food is a HUGE part of my life. I love it. I am obsessed with it. I did not think I would ever get to the point to say this but after six months it does not bother me nearly as much as it did to watch people eat their lovely pizza. Eating out is the hardest part of this by far (for me, anyway). At least at home you control the environment and cooking gluten-free is easy. But social situations can be tricky. So, having been there, I can understand but please know it will not always be like this (at least to this extent)! Seriously. :) Just think of it as one meal out of millions you will be having.

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