Newbie - Frustrated

[SillyHats]

Hello! I was diagnosed with Celiac about a month ago. After a brief mourning period, I pulled myself up by the bootstraps and decided I can handle anything! That's very easy to do when I'm at home and able to cook whatever I want with a few modifications. Not so easy to do when I'm not home. I have been glutened by three restaurants in the past 2 weeks. I do my best to meekly ask for something that doesn't contain any gluten, but due to my inability to quickly and easily explain exactly what I need, I seem to always end up anywhere from a little uncomfortable to up all night running to the bathroom. I guess I need to learn to order better. I will gladly accept any advice on how to be a good customer and still get a meal that is safe for me. I already have tipping a lot extra down to a science, but that doesn't do me much good when the tipping occurs and I still end up glutened.

Also, I was surprised to learn that I have two "friends" who get annoyed anytime they hear me say something about Celiac or any food allergy, whether or not I am addressing them. One of them says he doesn't believe in food allergies and the other says people with food allergies are annoying and he hates dealing with them in the restaurant business. I don't know what to do with those two "friends." We run in mutual circles, so avoiding them is not possible. Should I learn to accept and live with people who treat me like I have a made-up illness and have no respect for what I'm going through? I feel like having an allergy might be easier because I can prove it by going into Anaphylactic Shock in front of these friends and dying, thereby proving that it isn't made up. How do you deal with people who don't take you seriously because they can't physically see what you're going through?

Thanks!

[Cujy]

If all you can do is ignore them then so be it...we all here know that you arn't lying or making things up!!!! When my husband first was told that I "maybe" had ciliac, he said its a term used by doctors for every ailment known to man...well now that I have two confirmation tests under my belt he believes it. Doctors are quick to blame every symptom now on my celiac and that is hard to deal with, but Joe Blow public just won't get it. If you can explain it, if they are worth it, if not, just let them be. Stick to your guns and do what you need to to make yourself feel better.

As far as the restaurant thing, let me know if you get any good advice, I havn't travelled that road yet, as Im still a baby to the diet.

All the best with your quest to feel better, and Im sure alot of people here will tell you to forget about those NOT friends!!! Maybe the restaurant guy feels pressured to have more gluten free meals available in his line of business!!!! Right on!

[heatherjane]

The trick to restaurants is to plan ahead. You have to do some kind of research before you go: check online for gluten free menus, email or call the manager on off-hours and ask about their prep practices, go to places that have proven themselves trustworthy with other celiacs. If researching ahead of time isn't possible, you need to be willing to ask questions of the waitstaff even if it makes the situation a little uncomfortable. Make sure they know that you need to have your meal prepared with proper precautions to avoid cross-contamination (e.g. changed gloves, clean cooking area, no contact with gluten items). You have to be very specific. If they seem clueless, the best route is not to eat. Because situations like this can happen, make sure you have snacks on hand so you don't starve...or eat beforehand and get a drink while you're there so you don't feel completely out of place.

Triumph Dining makes good "allergy" cards that you can hand to the server which really saves you a lot of work in having to explain. They have them for different cuisines and in different languages. They've saved my rear so many times!

As for the people who don't get it. The best thing to do is politely disagree/explain, drop the subject, and carry on as usual. It's hard, but you're going to come across people like that, unfortunately. The good thing is that more and more people are becoming aware of this disease, so the rude ones are becoming fewer and farther between. Just try not to let them get to you, and surround yourself with supportive people.

Hang in there!

[SillyHats]

Thanks, ladies!!! Great advice!

[quincy]

Thanks, ladies!!! Great advice!

I am 2 years into being gluten-free and I STILL have the dining out problem. I just don't trust anyone when they say they are being careful because in reality they are NOT a gluten-free kitchen. I feel safe in a PF changs because they have been doing gluten-free for a long time. I don't really have any answers about this except to speak up no matter what. I was glutened alot when I first got dx'd too.

my concern is that I am less sensitive now so if my body doesnt tell me right away that I ingested gluten, does that mean that I didn't ingest it? CC is a bad thing for us.

[WendyLee]

Hello! I was diagnosed with Celiac about a month ago. After a brief mourning period, I pulled myself up by the bootstraps and decided I can handle anything! That's very easy to do when I'm at home and able to cook whatever I want with a few modifications. Not so easy to do when I'm not home. I have been glutened by three restaurants in the past 2 weeks. I do my best to meekly ask for something that doesn't contain any gluten, but due to my inability to quickly and easily explain exactly what I need, I seem to always end up anywhere from a little uncomfortable to up all night running to the bathroom. I guess I need to learn to order better. I will gladly accept any advice on how to be a good customer and still get a meal that is safe for me. I already have tipping a lot extra down to a science, but that doesn't do me much good when the tipping occurs and I still end up glutened.

Also, I was surprised to learn that I have two "friends" who get annoyed anytime they hear me say something about Celiac or any food allergy, whether or not I am addressing them. One of them says he doesn't believe in food allergies and the other says people with food allergies are annoying and he hates dealing with them in the restaurant business. I don't know what to do with those two "friends." We run in mutual circles, so avoiding them is not possible. Should I learn to accept and live with people who treat me like I have a made-up illness and have no respect for what I'm going through? I feel like having an allergy might be easier because I can prove it by going into Anaphylactic Shock in front of these friends and dying, thereby proving that it isn't made up. How do you deal with people who don't take you seriously because they can't physically see what you're going through?

Thanks!

I can't help with the dining out issue mainly because we don't dine out. But with your two 'friends' try explaining to them as someone else on the internet explained it. Gluten is POISON to you and being glutenated is the same as suffering food poisoning. They wouldn't knowingly eat anything that would poison them and neither do you.

[krysty]

Thank you so much for information.

[Annie82]

I was diagnosed less than a month ago and I am so uncomfortable trying to explain Celiac because cross-contamination automatically makes you sound like you have OCD even though it's completely valid. I hate thinking (worrying) about it all the time because I feel so sick and feeling like everyone is sick of hearing about it. Yuck. I'm glad you posted about this. I feel less alone.

[aliceintown]

It's really hard, as I was only recently diagnosed and not only do I have to stay from all the foods I used to love, I now get sick at the slightest bit of contamination. Not fun.

Perhaps you should ask your friends if they've been checked out. Just a thought.