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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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    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
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