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How To 'break The News'?


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9 replies to this topic

#1 Annaatje

 
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Posted 17 May 2011 - 05:33 PM

Hmmm, well it seems like I am going to be posting about social situations a lot, since that seems to be my biggest hang-up at the moment. ;)

A lot of people don't know about DS's celiac disease yet and/or haven't shared a meal with us since he started the gluten-free diet.

What I am wondering is, how do you guys break the news about the food restrictions when someone invites you over, or wants to bring food to your house. And in which cases do you just not say anything?

I find it hard, because naturally I am someone who apologizes easily and maybe too easily. Probably if I were the one with celiac disease (if I am too, I don't know it yet) I would start apologizing for the inconvenience and then explain. BUT! Because this is about my 5-year old son, I feel very strongly that he should NEVER have to apologize for having celiac disease. He can't help it so no need to apologize IMO. However, this means that we are going to have to give the right example, because we are the ones that will have to teach him how to deal with celiac disease and the gluten-free-diet.

What do you do??
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DS1 (5) Celiac (positive blood test March '11, positive biopsy May '11)
DS2 (2) negative blood test!!
DS3 (2 months) figuring out what to do with gluten introduction once he is ready for solids

me (31) waiting for blood test results
DH (34) waiting for blood test results

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#2 Jungle

 
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Posted 17 May 2011 - 06:55 PM

I just let them know when we are talking about when and where I usually say something like..

"I am so looking forward to getting to together. Something you should know is, I can't have gluten which is in a huge number of things and they like to hide it in places. How about I make it simple and just bring food for myself. I know it has been hard for me to think of what to cook when I was new at all of this so I don't want you to have to worry about it

or if it is a really good friend who really wants to know what to make and wants to include me might help her plan the menu. Like

"Well, we could just have roast chicken, and potatoes and veggies. Just make sure you season the chicken with herbs and salt and pepper and don't make the gravy 'til I get there and we'll use cornstarch. I know it is a lot but it makes a huge difference to me. Thank you so much for including me!"

And then I would still bring my own food and leave it in the car just in case.
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#3 Gremom7

 
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Posted 17 May 2011 - 07:14 PM

I deal with this a lot for my DS who is 3 years old. He doesn't have celiac, but he has many food allergies. I am the one who is gluten free. We've known about his allergies since he was 9 months old. I pretty much take food for him unless I know what is being made, but it is still easier and safer for me to bring his food for him. All my friends were/are very supportive of my son and me. They are used to us bringing food and you will get used to it as well. They also don't want to hurt him or be responsible for sending him to the hospital b/c of him eating something he shouldn't. I have no issues telling others and bringing food b/c he is my son and I will do anything to protect them. I also am very apologetic, but most people understand. My DH is very supportive of proactive as well and that helps having him on "mu side", if that makes sense. Even my 2 girls (7 and 5) are protective for their brother. You will get used to it and you will do great!
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#4 Takala

 
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Posted 17 May 2011 - 11:40 PM

It's safest to pack your own gluten free food along, especially with kids.

You can also pack along food for other people. Most people will eat anything that is small, round, and has frosting on it if they are not allergic to the ingredients. ;)

We are having this funny discussion right now with a wedding reception plan - the people who invited us are really nice and want me to have a nice meal, knowing I am gluten intolerant. I told my husband to pass it along not to worry and I am perfectly happy with plain rice. (You know how some of us like plain food ? ) My husband passes it back that it is a cultural thing that they want to feed people feast food during a celebration and that rice is for everyday. This is going to be interesting.

I thank people for offering me regular food but apologize that I cannot eat it - if it's social I say it's because of food allergies, and if it's a restaurant or medical setting it's that I'm gluten intolerant - but sometimes in restaurants we just say "allergies" because that gets the point across quicker to the server.

Example: yesterday I ate french fries at a place that uses a dedicated fryer and hand cuts their fresh potatoes on site. I have researched the company site, talk to them each time, and they are cool with it, but I say "wheat allergy" when ordering, because I doubt that with their limited menu (it is an In and Out, they do burgers, fries, and shakes and sodas, a model of menu simplicity) there is going to be rye or barley lurking in a freshly sliced potato or the oil. This is how they communicate with the food preparers, and this is what the manager told me to say to the counter person so they can push the proper button on the codes on the cash register. Then they call it back verbally, also.

I don't mind apologizing. I'm not trying to make other people feel bad, I'm just trying to avoid the stuff if they are trying to offer it to me. People are hard wired to try to offer you food if they are being social. Their family may have taught them that it is impolite to refuse. I assume they don't really know what could happen and they don't really want the entire textbook. Sometimes they are naturally curious and then I can answer the questions, which surprises them when I tell them I get neurological symptoms if I eat gluten proteins, sometimes I even get surprised, as when a waitress will say, "oh, I have a family member with that," and they really do "get it," and they have the menu details memorized about the ingredients.
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#5 Cara in Boston

 
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Posted 18 May 2011 - 05:09 AM

I bought a "Zojirushi Classic Bento Vacuum Lunch Jar" on amazon and use it to pack a separate meal for my son and I (we each have one). It keeps things hot and cold and is very simple and compact.

When we go to someone's house I usually explain how difficult it is to keep things gluten free and it is just easier and safer if I bring our food. I tell them not to worry at all since we are there for the company anyway. I also usually bring a dish to share and always remember to bring a dessert that my son can eat as well.

I do ask what they are serving so I can bring something similar. When it is time to eat, we just put it all on a plate, put away the Bento Jar, and enjoy dinner with everyone else.

We did have one problem when the other kids at the dinner wanted what my son was having . . .

I have lots of desserts I can make but I also keep the delicious, frozen cupcakes from Whole Foods in my freezer so we can bring one for him any time there is cake being served.

Cara
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#6 ravenwoodglass

 
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Posted 18 May 2011 - 05:22 AM

I just tell people that I have celiac, sometimes I will just say food allergies as people understand that better, and I will bring my own food or eat before the event.
Takala, I went through the same thing a few months ago when my DD was married. She had said she just wanted me to eat beforehand as she didn't think they could feed me safely at the reception. She knows how severely I react but I didn't want to make others uncomfortable at the table with me just sitting there with no food. I contacted the caterer directly and discovered she was very knowledgeable about celiac. It turned out almost everything they were serving was gluten free. I didn't eat a lot, just in case, but it went well and I didn't get glutened. It also turned out that 2 of the people at the table I was at were also celiac. They were members of my ex's family that I hadn't seen since I was married myself. So there is no knowing how many others in your situation will be there. Just ask for the name of the caterer and give them a call or an email.
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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)

#7 tarnalberry

 
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Posted 18 May 2011 - 07:27 AM

Everyone knows the deal with me by now (or most anyone who would invite me anywhere!), so I usually get a preemptive "we'll have a few tiffany-safe foods, but you might want to bring some food for yourself" (because I have always done this, they are just following my lead and I really do appreciate this response), and occasionally a preemptive "this should be safe for you, but can you check on this ingredient".

At first, I would just say "thanks for the invitation! I've got some food restrictions, so please don't plan on food for me, I will bring my own." I've *never* had anyone get offended by this, and only once had someone a little off put and request (strongly) that I bring something that matched what she was serving (lasagna - which I did, but what a pain!). I suppose I'm a little more used to it because my husband is a "picky eater" (we both hate that term; basically, there are a number of common foods that he strongly dislikes). If someone hates the taste of tomatoes, would someone get all uppity and offended about them not eating lasagna? Not nearly as much.

I have had to press a couple of times, for friends who do understand and try very hard (and usually successfully) to accomodate me, since I was uber cautious during my pregnancy. In those cases, I simply respond to the "well, surely we can find a way to make something safe for you?" with "you probably could, but I really don't want to take ANY risks, tiny though they may be, and I will feel a LOT better bringing my own food."
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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

#8 2Boys4Me

 
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Posted 18 May 2011 - 09:13 AM

I suppose I'm a little more used to it because my husband is a "picky eater" (we both hate that term; basically, there are a number of common foods that he strongly dislikes). If someone hates the taste of tomatoes, would someone get all uppity and offended about them not eating lasagna? Not nearly as much.

I'm sure he's not picky, he's just "selective". :)
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Linda, Mom to Ty (11 years old)
Ty was diagnosed by blood test June 7/05
biopsy Aug 11/05, diagnosis confirmed Aug 18/05
Mom, Dad and big brother Celiac-free.

#9 GlutenFreeManna

 
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Posted 18 May 2011 - 03:31 PM

I just tell them I have multiple food allergies at first (which is true because I do) and to not count me when planning for food. I will just bring my own food. I may ask what they are having so I can try to bring a similar meal for myself, but most of the time I take a salad with cooked chicken strips. I always make sure I get a drink even if I don't really like what they are having (I don't drink soda much except at parties). It just always seems to put people at ease to be able to offer you SOMETHING, even if it is just a glass of Coke. And if it's an appetizer type party where everyone is wandering around with food I keep the drink in my hand at all times. I find if I don't have anything in my hands, people try to get me to eat or ask why I'm not eating. So I keep a drink in my hands and move around talking to different people enoguh that no one notices I'm not eating. ;)
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A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

#10 jenngolightly

 
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Posted 19 May 2011 - 01:25 PM

We did have one problem when the other kids at the dinner wanted what my son was having . . .

This happens to me. :-)

When you get good at making gluten-free food, make sure you bring enough for everyone. But don't do this without checking with the host or hostess first. Some people are offended if you bring a dish without asking.
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Jenn
dx celiac 9/2007: gluten-free 9/2007
corn intolerant: corn-free 5/2010
nut allergy: nut-free 8/2010




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