Kyle just got the offical celiac disease label this week so we decided to try to dine out on Wednesday. We went to BJ's and ask the waiter to make him a special meal. He ended up having grilled chicken and mashed potatoes. By Thursday morning he was throwing up...everywhere all morning long. I called the resturant and found out the chicken had been marinated in soy sauce. If we doubted the fact that he had Celiac...we now know for sure he has it. I guess the most frustring thing for me is I have always hated "those people" who were so picky about their food. I realized I now have to become one of "those people." Though Kyle is only one, I can already see how many times I am going to have run to school, a friends house, sports event, or party, just to make sure Kyle has his own special treat. My husband and I decided to also mostly become Gluten free (except when we have a date...every date will be at an Italin resturant!). So I guess I am realizing quickly just how serious this disease is and how I am going to have to foght for my childs health everyday.
Been there... done that... got several t-shirts! Boy do I know how you feel! I remember that our first disaster was similar, but I can't even remember the exact circumstances now, after two years of my son being gluten-free. He was also dx'd at a year of age.
Looking on the brighter side though, it really does get easier as you go. Try not to think about it as being a "picky eater" because you're not doing it as a result of a fad diet or anything like that. You can tell people, if it makes it easier to explain, that for your son it's a matter of life and death. Maybe his throat won't swell and he won't turn blue and choke, but even if the immediate symptoms aren't bad enough, gluten contamination can contribute to things like bone loss, gastrointestinal cancers, etc etc etc, you get the point, and no good parent wants to put their kids through that. And that is what you are being... a good parent, not a pickey person. If you think about it that way, and explain to people that it's a disease, not just an allergy or a diet, it might make it easier for them to get the idea. And don't hesitate to take the time to explain it either, the more often you do, them more you educate the public.
Son has been gluten-free since December 2001
I also know how you feel. I was just diagnosed with Celiac less than one week ago. I went out to my first restaurant last night and actually called beforehand to speak to the chef. I ended up being pleasantly surprised. I informed the chef that I had a serious allergen to gluten and that I needed to know exactly what went into the Peking Duck (I knew what I wanted before going). He walked me step by step through the 48 hour process and answered all of my questions (like what type of vinegar, and if they use a seperate fryer). I went that night and brought my own soy sauce. They even gave me rice instead of the pancakes. I felt so relieved because I knew that what I was eating was gluten free. I happened to do that same thing today since I am planning on going out to dinner tonight. I just called and asked about their meats and which ones do not get cooked with any special sauces. I think that is the best route to take. Make sure you inform them that it is a serious allergy and you are not just being a picky eater. I hate "those types of people" too and now I have no choice but to be one. Also, in case you were unaware, Outback Steakhouse has a seperate gluten-free menu which is great! Hope this helps!
Ask about ANY food, meat, that is marinated! Tariaki sause, and soy sauce contain wheat! There is a gluten free soy sauce. Also beware of rices from restaurants, ask if it is cooked in chicken stock or water, if it is cooked in chicken stock DON'T let your son eat it. I have learned gluten hides in everything. Good luck to you and your son.
I hate to even admit to you how I solved the eating out problem. After getting sick more times than I can count (and I also have a celiac 7 year old), we almost completely stopped eating out. Except once a month, or once every 2 months, we now go out to fairly expensive restaurants. Because I go to the same expensive restaurants regularly, the wait staff know me. And the chefs dote on me. I figure that a $120 restaurant bill every 6 weeks averages out to $20 a week, which isn't so bad - - and it makes me feel like a queen (AND I don't get sick!!).
We only take my daughter out about once every 3 or 4 months, and I guess she'll have a rather distorted view of going out (e.g. no pizza parlors, but lots of white tablecloths!).
I fail to see the problem with eating gourmet... but then, I cook for a white table cloth restaurant, so I guess I'm not exactly objective
I do like the rational thinking of 120$ a dinner working out to 20$ a week, maybe I'll try and use that on my husband next time he says we can't afford it
Anyway, I hope everything is working out with you and that you are loosing the fear of eating out, it takes some effort, but it can be done, and I think its worth it to have a good meal, prepared by someone else!
Son has been gluten-free since December 2001
It seems like a couple of years ago I saw a card that you could take with you to a restraunt that explains your condition. You could give the card to the chef and the staff before you ordered so they would be extra careful with the preperation and the handling of your meal. Has anyone ever tried a card, or something like this?
Taylor- I have actually printed out those cards from somewhere on this message board. Unfortunately, I don't remember where they are I just called a restaurant yesterday to see if they were gluten friendly and the woman requested that I bring the card with me. She says it makes it easier for the chef and they will make sure to clean everything before cooking my meal. Hope this helps. Good luck finding the cards!
I got my restaurant card when I joined the gluten intolerance group (GIG at gluten.net). The card helped me shop at the beginning (when I couldn't remember what I was supposed to eat), but hasn't helped much at restaurants.
At restaurants with chefs (the white table cloth places!), everyone is already trained on this issue and all I need to say is "no gluten!" and they all snap to attention.
At places without staff who are trained in food allergies / intolerances, I have to explain everything and ask my 12 zillion questions about the food whether I have the card or not. Although it can be helpful to send the card back into the kitchen with the wait staff.
I ate out last week, by the way, at an amazing restaurant in downtown Seattle (Wild Ginger). Four of us ate family style, and I could eat everything on the table. I'm gluten-free, dairy, soy and egg free - I must admit I got a little weepy because I was so happy! And the food was great too!