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Restaurants


Azzie

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Azzie Rookie

I want to know if others feel the same way and what I can do to increase my comfort level. I unfortunately am often obligated to work related lunches. Even at a restaurant that has a gluten free menu, I worry that maybe they forgot and put the regular sauce on it instead, maybe there was cross contamination. There is a lot of ignorance out there about celiac disease. And busy servers that may not have time to make sure they get my order right. I am worried that every time I eat at a restaurant, if there is the possibility of some gluten ingestion, then overall, my intestine is not going to heal. And worse, I don't have obvious symptoms to tell if I've been glutenized or not. Are there ongoing tests a doctor can do to discover if I'm primarily gluten free or not? I was anemic and so I know they're going to test my iron levels but I'm not sure that's enough to really know if I'm avoiding gluten successfully or not. I would avoid all restaurants if I could. My comfort level is only with foods I myself have prepared.... Any suggestions or does anybody else feel this way?


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happygirl Collaborator

I think this is normal. You have learned its important to be gluten free, plus you don't have symptoms, so its harder for you to tell. As someone who reacts to tiny amounts of gluten, I can tell you that your fear is *somewhat* justified: I had to essentially stop eating out because the longer I was gluten free, the more sensitive I became. On the other hand, there are many people on this board who eat out, in moderation!, successfully, so it most certainly can be done.

The main test to see how you are doing is to periodically have the full Celiac blood panel run, to see how your levels are. Other than that and a repeat biopsy (which is not often done, unless levels are still high or the person is having complications/other symptoms), there aren't really any "tests." The best way is to minimize your risks...which can include minimize eating out, for some (including myself, and I bring my lunch, but that isn't practical or necessary for everyone!) When you do eat out, keep doing what you are doing: ask to see ingredients, tell them to use clean utensils/grill/not to touch anything else, speak to a manager, etc.

Good luck! I'm sure others will chime in with advice as well!

Azzie Rookie

Thank you! That does help. It's good to hear how others feel & also good to know there are annual blood tests that I can have. Thanks a lot!

I think this is normal. You have learned its important to be gluten free, plus you don't have symptoms, so its harder for you to tell. As someone who reacts to tiny amounts of gluten, I can tell you that your fear is *somewhat* justified: I had to essentially stop eating out because the longer I was gluten free, the more sensitive I became. On the other hand, there are many people on this board who eat out, in moderation!, successfully, so it most certainly can be done.

The main test to see how you are doing is to periodically have the full Celiac blood panel run, to see how your levels are. Other than that and a repeat biopsy (which is not often done, unless levels are still high or the person is having complications/other symptoms), there aren't really any "tests." The best way is to minimize your risks...which can include minimize eating out, for some (including myself, and I bring my lunch, but that isn't practical or necessary for everyone!) When you do eat out, keep doing what you are doing: ask to see ingredients, tell them to use clean utensils/grill/not to touch anything else, speak to a manager, etc.

Good luck! I'm sure others will chime in with advice as well!

happygirl Collaborator

You are welcome! I just want to re-iterate that many on here DO successfully eat out, but, also wanted to acknowledge that it is normal to feel like you do. Its a hard balance....basically, you have to do what is most comfortable for you. :)

Also, make sure your doc runs the full panel, including the tTG, which is highly sensitive.

Random Guy Apprentice

i also need to eat out at restaurants occasionally for work. i've been gluten free for one year.

I used to get stressed about restaurants - very stressed, but i've gotten better

i try to be nice - really nice - to the servers when explaining my requirements

I always hand them a printed card with the things i can't eat highlighted

i always choose something from the menu that wounds safe and ask the waiter to check with the chef, and if it's not safe, ask the chef to suggest something

I always mention cross-contamination being dangerous, and use croutons taken out of a salad as an example

i, like you, don't have symptoms. so how can i tell?

well, the antibody tests - all came back normal ttg <3

just got back from the gastro - results of endoscopy and biopsy - looks great - no evidence of celiac

a year ago, ttg>100 biopsy showed damage

it's working for me well enough

i know i'm lucky -

good luck

rg

Random Guy Apprentice

i should add that i'm comfortable at better restaurants - i steer clear of tgifridays style places

debmidge Rising Star

Azzie, you're not alone. I am trying to get my husband to go to a local restaurant which is a member of GIG and has a gluten-free menu; I even went there to discuss menu and hubby is still fearful. He has not been in restaurant for over 3 years now (since diagnosis).


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Jestgar Rising Star

Hi Azzie, welcome!

If I'm asked to go to a restaurant where I feel there's a high possibility of getting glutened, I call ahead and talk to someone. If I have a say in where we're going I choose a restaurant that has a low probability of cc, either because of the type of food, or because they know me.

I get a headache within 1/2 an hour of being glutened, so I can say with confidence - this approach works for me.

Badreligion0204 Newbie

Not sure if anyone lives in NJ or NY, but there is a restaurant on Bleecker Street in NYC called Risotteria which has

mostly gluten free food including brownies, beer, carrot cake, pasta, pizza (delicious), meatballs, cookies, breadsticks,

and on and on... I recommend trying it!! Its a very small place and cramped but well worth it.!

:-D

Mark

RiceGuy Collaborator

I also don't trust restaurants. Heck, I wouldn't trust my own mother to cook for me! But in my case it's more than just gluten, so I do have to be all-the-more careful. If I had to build my confidence in restaurants, I guess I might start with eating at a friend's home, after assisting in the preparation. That seems like a small enough step that I could take. Eventually, a quality restaurant with a sizable gluten-free menu might be something I could trust, as long as all ingredients can be known (because of other allergies/intolerances). But as of this time - not a chance!

ElizabethN Apprentice

It took me a long time to be comfortable eating out, but because of my job it is unavoidable. Over time I have found that most places seem to get it right and I have become slightly more trusting! I seek out places that have gluten free menus or places where the food tends to be naturally gluten free like Thai or Mexican, or salad bars.

I do react to small amounts of gluten, and I have had some bad experiences but the positive outweigh that. I just went to a local diner with a large group and they cleaned the grill before preparing my meal, wrapped my hamburger in lettuce, used fresh oil for my fries. I didn't get sick and the food was delicious. I still make 98% of my meals myself, I guess I have become more worried about family gatherings and potlucks than restaurants. You do have to stay on your toes and be your own advocate. If a server isn't truly listening then it can be a disaster- it is frustrating to take the time to explain the diet and have my meal come out with a breadstick on top! Let me tell you, I am not too confident after that happens!

And I agree with the comment about steering clear of TGI fridays and the like, they are the worst about it..

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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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