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How Hard Is It To Be Careful?


sandsurfgirl

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sandsurfgirl Collaborator

I'm never eating at Pei Wei again. I ate there for months frequently off the gluten free menu with no problem. Then on the weekend of July 4th they got me BAD. I was sick the entire weekend.

I gave them another chance and explained the manager that I'm very sensitive in my reactions, I got sick once before and please be extra careful with my meal.

So I'm biting into my salad and I feel this loud crunch. I can taste the wheat. It's a wonton noodle!! I spit it out and ran to wash my mouth and brush my teeth but I'm now getting that familiar pain in my gut.

So mad. No more Pei Wei for me. I sat and cried my eyes out at the dinner table. I was so hungry and I really love their food but it's not worth it. They got me twice. I ended up with frozen gluten free taquitos in the microwave. Not what I wanted to eat tonight.


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SGWhiskers Collaborator

Hugs. I'm so sorry. You've had a pretty tough couple of weeks. I hope you showed the manager the noodle or talked to him about it.

You ask how hard it is to be careful? It really depends on your sensitivity. I get cc from the things that wouldn't bother others. Eating out is next to impossible for me. For many, careful planning is all that is needed. I strictly avoid the dinner and lunch rush. I go an hour before it gets busy. 4:30/5:00, 11:30 lunch. I talk to my waitress and I speak with the cook/chef. I leave a great tip and I find out when the waitress/cook usually work so that I can time my return visits. I get cc more often when I feel social pressure to go out during busy hours even to GIG restaraunts. The kitchen is more likely to cut corners and make mistakes. Also everything gets cross comtaminated as the night goes on. You did the right things and it sounded like PeiWei was a good safe place for you. I wonder about staffing changes.

It is frustrating. If I want to go out to dinner with friends at a busy time, I take along my own food which I might eat instead of ordering if the place looks busy or the waitress is clueless.

Right now, there is a Noodles restaraunt in town I want to try, but I'm too scared.

I hope you get back to normal soon.

lucia Enthusiast

Argh! You did everything right, and yet ...!

I'm at a point where I'm very upset about the prospect of (mostly? totally?) having to give up food from restaurants. I can only growl in sympathy with you. It sucks.

Skylark Collaborator

I'm at a point where I'm very upset about the prospect of (mostly? totally?) having to give up food from restaurants. I can only growl in sympathy with you. It sucks.

Me too. "Growling in sympathy" is such a perfect phrase!

Aphreal Contributor

Oh darn, I am so sorry to hear you got hit again :( I only have 2 places I go. One mom n pop joint that I know uses no fillers. Meat patty with cheese and mashed potatoes and beans and cheese from tacobell. Anywhere else... I make my own food at home. I am tired of messing with restaurant food.

Gentle hugs, feel better soon!

Tiff

GypsyGirl Rookie

Ugh!! So sorry. It's depressing how many people just don't understand or worse, don't care.

I haven't been brave enough to eat out yet, and I dread what it's going to do to damage the family traditions. I was already very limited in what I could get a restaurants, but at least I could usually find SOMEthing, but now with the gluten thing, I can't imagine it really being worth the risk...

Very sorry you've been slammed twice so close together, that's just miserable.:(

sandsurfgirl Collaborator

Let's just give a big growl together! GRRRRRRRRR LOL

I hate that every time I eat out it's a risk. I hate it. But I will not quit eating out. I just won't. (yet)


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      Very good pizzeria with small dining room in back of the restaurant. The owner's daughter has celiac & they have gluten free pizza & a gluten free menu. Some items from the regular menu can be made gluten free also. They have a lunch menu which we ordered from & my chicken with spinach & mozzarella over gluten-free penne was delicious. They also have Tuesday night pasta specials & Thursday night chicken pasta specials. We plan on going back for dinner soon.
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      @Aretaeus Cappadocia and @Russ H thank you both for your helpful advice and information. I haven't seen a GI in years. They never helped me aside from my inital diagnosis. All other help has come from my own research, which is why I came here. I will be even more careful in the future. 
    • Aretaeus Cappadocia
      @nancydrewandtheceliacclue, you are welcome. After looking at this thread again, I would like to suggest that some of the other comments from @Russ H are worth following up on. The bird-bread may or may not be contributing to what you are experiencing, but it seems unlikely to be the whole story. If you have access to decent healthcare, I would write down your experiences and questions in outline form and bring this to your Dr. I suggest writing it down so you don't get distracted from telling the Dr everything you want to say while you have their attention.
    • Aretaeus Cappadocia
      @Russ H, I partly agree and partly disagree with you. After looking at it again, I would say that the slick graphic I posted overestimates the risk. Your math is solid, although I find estimates of gluten in white bread at 10-12% rather than the 8% you use. Somewhat contradicting what I wrote before, I agree with you that it would be difficult to ingest 10 mg from flinging bread.  However, I would still suggest that @nancydrewandtheceliacclue take precautions against exposure in this activity. I'm not an expert, I could easily be wrong, but if someone is experiencing symptoms and has a known exposure route, it's possible that they are susceptible to less than 10 mg / day, or it is possible that there is/are other undetected sources of exposure that together with this one are causing problems. At any rate, I would want to eliminate any exposure until symptoms are under control before I started testing the safety of potentially risky activities. Here is another representation of what 10 mg of bread would look like. https://www.glutenfreewatchdog.org/news/wp-content/uploads/2019/10/10mgGlutenCrumbsJules.jpg Full article that image came from: https://www.glutenfreewatchdog.org/news/what-does-10-mg-of-gluten-look-like/
    • nancydrewandtheceliacclue
      @Aretaeus Cappadocia thank you for your reply and the link, that is very helpful to get a visual of just how small of an amount can cause a reaction. I know I am not consuming gluten or coming into contact with gluten from any other source. I will stop touching/tossing bread outside! My diet has not changed, and I do not have reactions to the things I am currently eating, which are few in number. My auto immune reaction just seems so severe. The abdominal pain is extreme. It takes a lot out of me. I guess I will be this way for the rest of my life if I ever happen to come into contact with gluten? I appreciate the help. 
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