Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Scared To Eat Out


Jenni121

Recommended Posts

Jenni121 Rookie

I've read so much about the dangers of cross-contamination, and how important it is to use separate cutting boards, preparation surfaces in kitchens, utensils, etc.

How do you all eat anywhere other than at home? If I go out for dinner, there's no way I can know whether the chef used a separate cutting board/toaster/etc for my meal or not. And what about eating at friends' houses? They wont know to (and I would never expect them to) prepare my food completely separate to everyone elses.

Surely I dont have to eat every meal at home for the rest of my life...?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



GlutenDude Newbie

I'll pass you a few truths. Truth #1: You have little control over what happens behind the scenes when you go out to eat. Truth #2: You will get glutened once in awhile if you eat out. Truth #3: Don't let it stop you from going out.

I am as diligent as they come. And yes, I eat out less often than I used to. And there are only a handful of restaurants I go to. That is the key. Find a few that you can trust and simply stay away from the others if you can help it. It's a drag, but you will adapt.

And even the ones you can trust, you must stay on top of. We eat sushi out pretty often. Been going to the same place for a few years. The other day, I happen to notice the sushi chef put his bare hand into the wasabi. If he's got wheat on his hands, I'm screwed. Will I stop going there? No. But from now on, I will try to bring my own wasabi. Like I said, a drag, but you get used to it.

Hope this helps.

Gluten Dude

T.H. Community Regular

Truth #1: You have little control over what happens behind the scenes when you go out to eat. Truth #2: You will get glutened once in awhile if you eat out. Truth #3: Don't let it stop you from going out.

I'd add something to that last one: Don't let it stop you from going out if your symptoms are mild enough or short lived.

For those with milder or shorter lasting symptoms, I think this is fine advice. A mistake affects a few hours, or a couple days, and may result in a little discomfort and unpleasantness. There can be other issues, but generally, the effect is not huge.

But for those with more debilitating or long lasting symptoms, more caution may be warranted. Some people have symptoms that completely put them out of commission for weeks. Gluten ataxia is even believed to potentially result in permanent damage ot the nervous system with every glutening. In that case, few of us would think that one meal out is worth risking weeks of pain or permanent damage, you know?

For trying to lower your potential risk, though, I would call any potential restaurant ahead of time, during non-rush hours. Ask to talk to the manager, describe your issues, tell them the level of care needed to avoid gluten cc, and ask if they can do this, and if so, what they can do to accommodate you.

A few restaurants here and there are really, really careful. Going to eat there at off hours can help insure you are not going to have something accidentally cc'd due to servers rushing around.

Making sure to talk to the manager of the restaurant, when there, helps as well.

And if you get a bad vibe? Don't go, don't eat, just get up and leave. The response 'oh yes, not a problem, we can completely accommodate your allergies' is only good if they let you tell them everything you need, and the level of care needed. If they cut you off the second you mention a food allergy, acting confident? That's rarely a good sign.

If you have a local celiac group, they can often be a good source for what restaurants have done well by the celiac community in your area, and which ones to avoid.

GlutenDude Newbie

I'd add something to that last one: Don't let it stop you from going out if your symptoms are mild enough or short lived.

That's good advice and I certainly didn't try to minimize it. As a matter of fact, I'm one of those who is out of commission for some time if I get glutened so I hope I didn't come across flippant. Always err on the side of caution, but don't become a hermit for fear of getting glutened.

Jenni121 Rookie

Thanks for the replies. Thats really good advice, both of you.

I guess the problem is, I dont get any symptoms, so have no way of knowing if I've been glutened. The only reason I was tested for coeliac disease was because I've been anaemic for a decade and the doctors could never figure out why.

I'll have a chat to the coeliac society in my state and see if they have any recommendations.

Thanks again.

Marilyn R Community Regular

We ate out for the first time in over three months tonight. It hasn't personally been worth it for me, but that's a choice you'll have to make for yourself. (Plus, I'm presuming I'm quite a bit older than you.) We went to Bone Fish Grill, they had a great menu, superb service and a gluten-free menu to die for.

I'm hoping I'll be ok tomorrow and the next day. If so, I'll go back there. If not, I'll try to replicate the recipes used. I know they used a lot of butter and garlic...

Skylark Collaborator

Great advice so far. Remember that you cook in your own kitchen day in and day out. A dirty cutting board at home will CC every single meal you eat. You are taking a risk on the one meal you eat at a restaurant, but a lot that have gluten-free menus are quite careful. If your glutened symptoms aren't debilitating it's worth the small risk to go ahead living your life!

Besides, nothing in life is without a little risk. To give you a little perspective, you could die in a car crash on the way to the restaurant too. :P You probably don't let that stop you!

There's a lot of info on eating out around the board. Just be sure when you order off the gluten-free menu that you let the waitress know that you are celiac and need truly gluten-free food. That way if your meal comes out with an obvious mistake (like bread on your plate) you can send it back with no hard feelings.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



kareng Grand Master

Most of us do go out occasionally. We find a few places that do a good job with gluten-free. Places like PF Changs, Outback, etc. Look around on the restaurant section for places that people do well with. It's always risky to eat out, but, at some places, the risk is small. There is even a thread with completely gluten-free places if any are in your city.

Beware of places like Appleby's. They have a " Gluten Free" menu but it's not really. Go look at it on line. They list things like fries but in the small print say they are cooked with all the gluteny things.

there are several associations which certify and train restaurants. If a restaurant has gone thru their training, it will likely be mentioned on the menu. These places are probably safer than non- certified. Upscale ( expensive) places tend to have trained Chefs, not just cooks and can help you. If you go when it's not busy, you stand a better chance, too.

psawyer Proficient

Great advice so far. Remember that you cook in your own kitchen day in and day out. A dirty cutting board at home will CC every single meal you eat. You are taking a risk on the one meal you eat at a restaurant, but a lot that have gluten-free menus are quite careful. If your glutened symptoms aren't debilitating it's worth the small risk to go ahead living your life!

Besides, nothing in life is without a little risk. To give you a little perspective, you could die in a car crash on the way to the restaurant too. :P You probably don't let that stop you!

There's a lot of info on eating out around the board. Just be sure when you order off the gluten-free menu that you let the waitress know that you are celiac and need truly gluten-free food. That way if your meal comes out with an obvious mistake (like bread on your plate) you can send it back with no hard feelings.

Well said, Skylark.

I react symptomatically to gluten. I eat out from time to time. I choose places where I expect better attention to keeping things where they belong. I tell them I need them to use clean utensils. I wouldn't eat at a greasy spoon diner, but most restaurants do care about cleanliness and don't want the onions to get into the chocolate truffle.

T.H. is providing her view based on her own experiences. While real, they are not at all typical.

Jestgar Rising Star

I eat out. I have a few restaurants that I know are perfectly safe, and when I'm feeling brave I'll try a new place :P . You have to figure out what works for your life.

rosetapper23 Explorer

As for eating at friends' homes, my advice is to always bring your own food. This especially applies to potlucks! Never, NEVER eat at a potluck. You'll need to warn your friends ahead of time that they don't have to cook or prepare food for you because you firmly believe that it is too overwhelming to expect a person to make a gluten-free meal without knowing all the ins and outs that are involved. If a friend is only inviting ME over to eat, I usually suggest going to a safe restaurant instead. However, if lots of friends are invited, I always insist (firmly, if necessary) that I will indeed bring my own food so as not to burden the host/hostess and to ensure my own safety. Don't worry--it gets easier to tell people this with practice...and eventually everyone knows.

jerseyangel Proficient

As for eating at friends' homes, my advice is to always bring your own food.

I agree with this--it's just easier all around and safer for us.

I love to eat at PF Changs and Outback, and go to Starbucks 2-3 times a week. Like Jess said, you have to find what works for you and where you are comfortable.

Skylark Collaborator

As for eating at friends' homes, my advice is to always bring your own food. This especially applies to potlucks! Never, NEVER eat at a potluck. You'll need to warn your friends ahead of time that they don't have to cook or prepare food for you because you firmly believe that it is too overwhelming to expect a person to make a gluten-free meal without knowing all the ins and outs that are involved. If a friend is only inviting ME over to eat, I usually suggest going to a safe restaurant instead. However, if lots of friends are invited, I always insist (firmly, if necessary) that I will indeed bring my own food so as not to burden the host/hostess and to ensure my own safety. Don't worry--it gets easier to tell people this with practice...and eventually everyone knows.

Actually it depends on your friends. I have one friend with a ferocious soy allergy and dairy intolerance who totally "gets" CC and if she says something is gluten-free, it is meticulously gluten-free. I usually make whatever I'm cooking soy-free/dairy-free/gluten-free so we can both eat it. Another friend is a brilliant engineering student and she understands my diet so well she called me once to ask about a particular ingredient for the dish she was cooking for a party at my house. She also discovered the new gluten-free Rice Krispies before I did! Her food has never made me sick. Two other friends are also gluten-free (both becasue of my diet) and a third is a nutritionist who is not only gluten-free but grain free and he usually arrives with dishes of veggies and homemade hummus. Some of the "glutenoids" even come with bags of chips marked "gluten free" or boxes of commercial gluten-free cookies because so many of us don't eat gluten. My friends are super careful about letting me get portions of food when gluten-free dishes first arrive if there are wheat crackers or bread around. I eat at potluck parties in my group of friends with no fear at all. B)

rosetapper23 Explorer

Yes, I should have allowed for the caveat that friends who are extremely knowledgeable or gluten free themselves are fine for fixing me meals. My neighbor eats gluten free nowadays even though she doesn't have celiac...and after a few "mistakes" where I was accidentally glutened, she has been a wonderful source of welcomed dinner invitations. These types of friends, though, are few and far between. Usually, I just bring my own food...

Leper Messiah Apprentice

I'd add something to that last one: Don't let it stop you from going out if your symptoms are mild enough or short lived.

For those with milder or shorter lasting symptoms, I think this is fine advice. A mistake affects a few hours, or a couple days, and may result in a little discomfort and unpleasantness. There can be other issues, but generally, the effect is not huge.

But for those with more debilitating or long lasting symptoms, more caution may be warranted. Some people have symptoms that completely put them out of commission for weeks. Gluten ataxia is even believed to potentially result in permanent damage ot the nervous system with every glutening. In that case, few of us would think that one meal out is worth risking weeks of pain or permanent damage, you know?

For trying to lower your potential risk, though, I would call any potential restaurant ahead of time, during non-rush hours. Ask to talk to the manager, describe your issues, tell them the level of care needed to avoid gluten cc, and ask if they can do this, and if so, what they can do to accommodate you.

A few restaurants here and there are really, really careful. Going to eat there at off hours can help insure you are not going to have something accidentally cc'd due to servers rushing around.

Making sure to talk to the manager of the restaurant, when there, helps as well.

And if you get a bad vibe? Don't go, don't eat, just get up and leave. The response 'oh yes, not a problem, we can completely accommodate your allergies' is only good if they let you tell them everything you need, and the level of care needed. If they cut you off the second you mention a food allergy, acting confident? That's rarely a good sign.

If you have a local celiac group, they can often be a good source for what restaurants have done well by the celiac community in your area, and which ones to avoid.

I would agree with that, I am firmly in the weeks not days category and in my head the balance is weighing up 1) not being glutened against 2) fitting in socially and enjoying a meal out.

For me the scale weighs heavily in favour of not being glutened because my symptoms last 2 weeks and have me feeling awful this whole time but if it's only a few days that you are out for then you may think it's worth the risk. I also have OCD though, I think avoiding gluten makes you that little bit more paranoid too and not sure if I trust half the restaurants out there (having worked in one myself not so long ago).

Marilyn R Community Regular

There's nothing wrong with preparing all of your foods at home, or taking foods to share (and safely eat) at parties. I started getting weird about plastic containers, now I freeze everything in pint jars. I'm not sure if that's OCD or not....but it seems healthier and a pint of whatever I've prepared is about right for my lunch or dinner. If my dp is joining me, 2 pints are perfect.

I avoided restaurants for quite a while, but had a good experience a few days ago.

I've lost a couple of friends because I didn't want to eat out or at fried's homes for awhile. I'm ok with that, I think it's good to know who your fair weather friends are.

sandsurfgirl Collaborator

I've been gluten free two years in January. I eat out a lot, but I have my set restaurants I go to most of the time. I hardly ever get glutened when I go out and I'm very sensitive. My hubby glutened me bad by drinking from my straw by accident and I had D where I barely made it to the bathroom in the middle of Disneyland.

First of all start doing your research so you have a few go to places you can eat out.

NEVER assume something is gluten free. You'd be shocked at how many Mexican restaurants use soy sauce in their marinades.

Call ahead if you can when they are not busy if they don't have a gluten free menu.

Be polite and make them want to take care of you. Don't ask rudely or demand they provide food for you.

Use common sense. CPK had a gluten free menu but I never tried it. I knew there was no way they could keep CC off stuff.

That menu lasted about a month because their hands are all covered in flour when they reach in and grab cheese and toppings.

Always say you have an ALLERGY to gluten. Words like celiac and intolerance and autoimmune makes their eyes glaze over and all they hear is blah blah blah. Allergy makes them think of rashes, and throats closing and stopped breathing. It makes them be on more alert and it makes sense to them.

Order things that are easy to make gluten free. Order the simpler foods that are harder for them to screw up.

I always thank them profusely and I even apologize for being trouble if it's busy or whatever. I work very hard to get them on my side and I've found that 99% of the time I get really good service and they take care of me really well. I was so stressed about my sister's rehearsal dinner for her wedding. I called days ahead of time and they did an amazing job with my meal and my son's. I asked the manager to help me figure out what would easiest for them to prepare and we went through the menu possibilities. I checked in with the wait staff right when we got there and they made sure I got a safe meal and so did my little boy. They even made him a shake because he was sad about not being able to eat the cake.

Also get used to the idea that going out now isn't about the food like it used to be. It's about the social function and the fun of not having to cook for yourself. It's much better to get a safe meal than it is to eat something gourmet that can have CC on it. You can make it about the food when you're at home. Learn to make some of your favorite foods. I google recipes for things I can't get when I eat out or don't want to chance all the time and we make them at home. When you go out, be okay with eating whatever they can prepare safely for you and enjoy the company and the atmosphere of the restaurant.

Takala Enthusiast

Rule for eating out:

If you must be fully functional and up on your game the next day.... it's better to eat at home than to go to a new restaurant, even if they have a gluten free option. And the day before a holiday will have the "B" team at the restaurant... trust me, you want to eat there some other time. But if you're not a hyper super sensitive, you may find yourself having some success because some restaurants/chefs can do allergy friendly meals.

Rule for potlucks:

Don't even think about it, just pack and BYOF. If you make something tasty, bring some extra it to share with others.

rosetapper23 Explorer

Takala,

You are SO right! One Christmas Eve, I hosted a small family party at a well-known restaurant. I had explained my concerns about gluten, and the waitress went back to speak to the "chef" about a particular menu item that looked like the only thing I could eat. She assured me that the chef said that there was absolutely no wheat or gluten in the dish. The dish consisted of sliced chicken breasts with a mushroom sauce....however, when I got to the bottom layer of "chicken," I realized that the slices of chicken breast were lying on slices of sourdough bread, which I had been slicing through when cutting the chicken! I nearly started crying right there in the restaurant. Talk about complete incompetence on the part of the chef and server! The next day was Christmas, and the whole affair was at my house. I could barely get up to start the preparations, couldn't eat anything, and spent most of the day in my room bent over in pain. Never again will I eat at a restaurant on the eve of a big holiday. You offered VERY good advice!

sandsurfgirl Collaborator

Takala,

You are SO right! One Christmas Eve, I hosted a small family party at a well-known restaurant. I had explained my concerns about gluten, and the waitress went back to speak to the "chef" about a particular menu item that looked like the only thing I could eat. She assured me that the chef said that there was absolutely no wheat or gluten in the dish. The dish consisted of sliced chicken breasts with a mushroom sauce....however, when I got to the bottom layer of "chicken," I realized that the slices of chicken breast were lying on slices of sourdough bread, which I had been slicing through when cutting the chicken! I nearly started crying right there in the restaurant. Talk about complete incompetence on the part of the chef and server! The next day was Christmas, and the whole affair was at my house. I could barely get up to start the preparations, couldn't eat anything, and spent most of the day in my room bent over in pain. Never again will I eat at a restaurant on the eve of a big holiday. You offered VERY good advice!

Okay this is gross, but I'm gonna suggest it anyways. I was served gluten cake instead of a gluten free brownie on my birthday at Outback last year. Ate half a piece of cake after the waiter assured me had triple checked to be certain it was the gluten free dessert. As soon as I realized, I ran to the bathroom and forced myself to throw it all up. I know that's awful, but I would've been sick for weeks from eating that much gluten. At least that way I got less gluten in my system. I got over it in a few days instead of weeks and I do credit my quick action for that.

I also of course alerted the manager and the waiter. Our bill was free for the dinner and they gave us $90 in gift cards to eat there again later. I would make sure the manager knows. That isn't a little CC, that's a serious blatant disregard for your dietary needs.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,019
    • Most Online (within 30 mins)
      7,748

    TryingHardToGoGlutenFree
    Newest Member
    TryingHardToGoGlutenFree
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.1k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      First off, I’m sorry to hear about the challenges you’ve been facing, both with your recent celiac concerns and the dermatitis you've been dealing with. It’s clear you’ve put in a lot of effort to figure this out, and it’s frustrating to still have lingering questions. Regarding your TTG-IgA result of 11.6 U/mL, you’re correct that many labs and celiac experts consider values above 10 to be indicative of possible celiac disease. However, interpretation can vary depending on the lab and the individual. It’s worth noting that slightly elevated levels can also sometimes occur with other autoimmune conditions, including Hashimoto’s thyroiditis. However, since you already have Hashimoto's and a strong family history of celiac (your daughter’s diagnosis), the most likely explanation is that you also have celiac disease. Here are a few steps you might consider to gain peace of mind: Consult a Gastroenterologist: They have more expertise in celiac diagnostics than a general PCP. They may recommend additional tests like an EMA (endomysial antibody) test or even genetic testing to confirm your predisposition further. Consider a Small Intestinal Biopsy: If there’s uncertainty, a biopsy remains the gold standard for celiac diagnosis. It can provide clarity, especially since your TTG-IgA is borderline. Monitor Symptoms on a Gluten-Free Diet: Since you already have another autoimmune condition and a chronic rash (which could resemble dermatitis herpetiformis, a skin manifestation of celiac disease), some doctors might suggest trying a strict gluten-free diet for a few months under supervision. If you notice a marked improvement, it might be telling. Keep in mind that if you go on a gluten-free diet before an endoscopy/biopsy, you will need to do a gluten challenge and eat lots of gluten daily for at least two weeks before the biopsy. As for your genetic results from 23andMe, having two copies of a celiac-associated gene (HLA-DQ2 or DQ8) does increase your risk of developing celiac disease considerably. However, about 30-40% of the general population carries these genes, and only a small percentage actually develop the disease. The genetic predisposition combined with your elevated TTG-IgA and symptoms could justify further investigation. Lastly, regarding your chronic "dermatitis," it might be worth bringing up the possibility of dermatitis herpetiformis to a dermatologist familiar with celiac disease. This condition is often misdiagnosed as eczema or another dermatitis type and may not respond well to typical creams. A skin biopsy taken near (not on) an affected area can help diagnose it.
    • BertoleAmur
      I’ve been gluten-free for a while too, and I know how frustrating it can be when your body reacts unexpectedly. I haven’t personally experienced what you’re describing with Ozempic, but I did have a situation where I took a break from certain supplements and noticed my body felt a lot better.
    • Scott Adams
      Two of our moderators @knitty kitty and @Wheatwacked know a lot more about nutrients and may be able to offer some more help, so hopefully they will chime in here.
    • aperlo34
      Hi Scott, thanks for the reply.    I’m currently taking  3000IU vitamin D3 centrum multivitamin  500mg vitamin C 1000mcg B12 naturemade softgel Omega 3 (for dry eyes) My latest labs for vitamins were D - 43.6 (range 30-100) B12 - 406 (range 232-1245) Folate - 11.4 (range >3.0) ferritin - 117 (30-400) magnesium - 2.3 (1.6-2.3) Calcium - 9.9 (8.7-10.2)   I am 29 and really struggling with this emotionally, I was caught by surprise 2.5months ago with this dx and pretty much no symptoms that I really knew of besides low ferritin. When I first met with the GI doctor in July and he ordered the endoscopy/colonoscopy, that was around when the twitching started. I’m unsure if it’s the anxiety of it all (I have been consistently freaking out since the scopes were ordered, losing sleep, obsessively googling etc.) or if it’s celiac related. I’m horrified that I might have something else wrong with me.  Additionally, I’ve been getting some mixed opinions - dietician told me to stop the additional b12 because my multi had b12, but I see online that some people think b12 levels should be well over 500.    Some other things that I’ve experienced since I went gluten free are more “sinus” headaches, facial pressure, some cramping in my left side (could be postural problems I’m dealing with) and dry eyes - my eye doctor has me on some eyes drops that really help and this is a work in progress. And no my mouth isn’t dry too 😅   I’m absolutely beside myself with fear of other AI diseases and have no one I can really turn to (besides online) that has dealt with this. I have no idea what’s in my mind and what is a real symptom anymore because I’m so hyper aware of every sensation in my body! Thank you so much in advance for any input/guidance.    
    • Yaya
      I never had muscle twitching that I would relate to Celiac Disease (celiac disease).  However, I now have Long Covid and muscle twitching, burning, and other issues cropped up with that.  Predating all was restless leg syndrome (RLS).  Are you talking about RLS?  I've had that since '99.  It gets progressively worse.  
×
×
  • Create New...