How to Handle Going Out to Eat with Celiac

[vvicin02]

I was wondering how you deal with going out to eat with family or friends with Celiac Disease. Since my diagnosis, I tried to go out with some friends to a high rated gluten-free restaurant a couple of times. However, after eating there I suspected it was not totally Gluten Free. I find it not worth it - I just don't trust anyone but myself with my food. I just wonder how to deal with all of this. My wife doesn't want to go out to eat with me if I just sit there and drink coffee or water. Sometimes, I order and pretend to eat - is that silly or what? I am not comfortable bringing food in with to a restaurant or making a scene. I am lucky that I seldom eat out. I just wonder sometimes, how would I of handled this many years ago. Your thoughts and experience would be helpful...still learning..

[Ennis-TX]

First few years, I tried a few, found most made mistakes, and only found 2 dishes from one restraunt I trusted after the manager showed me how they did it (roasted fish, or veggies, they used a conveyor oven and put my food on foil sheets and ran it through it), The other place closed. I would also often bring my own food in, own utensils (I often eat with chopsticks), etc to meet people and lay out napkins to eat my food on and bring my own drink.
I pretty much stopped eating out now days, I do have one place I will go to, but the owner has 2 daughters with celiac and the restaurant is gluten free aside from bringing in a few gluten pastries/beers prepacked and made off site.

Family and friend times now involve me cooking in my house, getting a movie, and inviting family or friends over 1-2 times a month. Meals vary, from BBQ, Steaks, Stir Fry, Burgers, Chili, Roast, Sheet Pan Meals, Salad bars, to platters of different appetizers and serve yourself. I often host holidays for my family also. Years of practice I have recreated many dishes to my dietary restrictions of being gluten free, dairy free, corn free, and most part completely grain free and low carb.

[squirmingitch]

vvicin02

How about trying totally gluten-free restaurants? Are there any within reasonable distance from you? That way you could feel comfortable & you & your wife get to go out once in a while.

Personally I am far too sensitive to risk eating out at all and we have no completely gluten-free eateries anywhere near us. 

[vvicin02]

We have a good number of Gluten Free places near me but I just don't really trust any of them. I guess I need time to really gain trust on where to eat. I use my app to read reviews but it seems that almost every time I try to eat out, there seems to be something wrong. I really do not need to eat out since I enjoy baking and cooking my own meals. The funny thing is that I sometimes don't even trust my wife...who does not have celiac disease. I guess time will change once I know I am getting healthy. 

[cyclinglady]

My hubby had been gluten free for 12 years before I got my diagnosis, so it is much easier for me in terms of spousal support.  However, my friends and extended family have become used to me not eating when we go to restaurants.   It was awkward at first, but they got used to it.  They know how sick I can get.

We do go out occasionally.  Luckily we have a dedicated restaurant nearby.  We tend to base vacations on the locations of dedicated gluten-free restaurants.  

The only times I have been glutened have been when I have eaten out at non-dedicated restaurants.  I took risks that first year and for a few extended family vacations.     I knew the gluten-free diet well when I was diagnosed, so I avoided Newbie classic mistakes (but made those mistakes on my hubby years ago).  I do not trust people to prepare my food without my oversight.    There it is.  I like feeling well.

Crazy as it seems, food has become less of an issue socially.  I walk and bike with friends.  Camp.    Meet for coffee.  Invite friends to my house for games/dessert or a full gluten-free meal.  Let’s face it, most of us should be eating less with 60% of adults being overweight!  

[Ennis-TX]

3 hours ago, vvicin02 said:

We have a good number of Gluten Free places near me but I just don't really trust any of them. I guess I need time to really gain trust on where to eat. I use my app to read reviews but it seems that almost every time I try to eat out, there seems to be something wrong. I really do not need to eat out since I enjoy baking and cooking my own meals. The funny thing is that I sometimes don't even trust my wife...who does not have celiac disease. I guess time will change once I know I am getting healthy. 

Well, my mother and father poisoned me by accident so many times I still to this day will not eat anything they do not fix in my kitchen (whole house is gluten free), with ingredients I supply, with me in there. Oh we still cook together a few times a year but I would never trust her alone to make anything for me without oversight.

[Chrismark]

On 6/12/2019 at 5:33 AM, vvicin02 said:

I was wondering how you deal with going out to eat with family or friends with Celiac Disease. Since my diagnosis, I tried to go out with some friends to a high rated gluten-free restaurant a couple of times. However, after eating there I suspected it was not totally Gluten Free. I find it not worth it - I just don't trust anyone but myself with my food. I just wonder how to deal with all of this. My wife doesn't want to go out to eat with me if I just sit there and drink coffee or water. Sometimes, I order and pretend to eat - is that silly or what? I am not comfortable bringing food in with to a restaurant or making a scene. I am lucky that I seldom eat out. I just wonder sometimes, how would I of handled this many years ago. Your thoughts and experience would be helpful...still learning..

I will tell you this much.  If a restaurant has been determined to be gluten free by passing government testing, you cannot trust it.  If they are tested and found to be very low gluten, they will  then be rated as gluten free.  That is a serious problem that Celiacs go through.  I don't have an answer for you, but if you ever find a good meal at a restaurant that you can eat, do not ever change.  Variety is not important to Celiacs.

[kareng]

15 minutes ago, Chrismark said:

I will tell you this much.  If a restaurant has been determined to be gluten free by passing government testing, you cannot trust it.  If they are tested and found to be very low gluten, they will  then be rated as gluten free.  That is a serious problem that Celiacs go through.  I don't have an answer for you, but if you ever find a good meal at a restaurant that you can eat, do not ever change.  Variety is not important to Celiacs.

What country do you live in ?  The government doesn’t test any restaurants in the US

[Chrismark]

I am sorry.  I am from Italy, where they test for this.  I thought that they did this here.

 

[Chrismark]

I looked up the FDA regulations on a gluten free label, and they do not require that gluten be totally gone in order to be gluten free.  It is a very low amount of gluten, but if you are very sensitive, it might hurt you.

[kareng]

4 minutes ago, Chrismark said:

I looked up the FDA regulations on a gluten free label, and they do not require that gluten be totally gone in order to be gluten free.  It is a very low amount of gluten, but if you are very sensitive, it might hurt you.

But that does not govern restaurants.  

[Chrismark]

4 minutes ago, kareng said:

But that does not govern restaurants.  

 

4 minutes ago, kareng said:

But that does not govern restaurants.  

 

Restaurants buy products, labeled gluten free, and they aren't quite.

 

 

[kareng]

1 hour ago, Chrismark said:

 

 

Restaurants buy products, labeled gluten free, and they aren't quite.

 

 

In the US, for food to be labeled gluten-free , it must be below 20 ppm. Many are tested at 10 ppm or less..  That does not mean they actually contain any gluten.  Less than 20 ppm is considered safe for Celiacs.  I am sorry, I do not have time right now to explain this.  I know it has been explained many times in this forum.  Maybe you could find the explanation of how small 20ppm is and how the whole process works.  

[Grlybrainiac]

On 6/12/2019 at 8:33 AM, vvicin02 said:

I was wondering how you deal with going out to eat with family or friends with Celiac Disease. Since my diagnosis, I tried to go out with some friends to a high rated gluten-free restaurant a couple of times. However, after eating there I suspected it was not totally Gluten Free. I find it not worth it - I just don't trust anyone but myself with my food. I just wonder how to deal with all of this. My wife doesn't want to go out to eat with me if I just sit there and drink coffee or water. Sometimes, I order and pretend to eat - is that silly or what? I am not comfortable bringing food in with to a restaurant or making a scene. I am lucky that I seldom eat out. I just wonder sometimes, how would I of handled this many years ago. Your thoughts and experience would be helpful...still learning..

I found a couple places that I could eat safely (a Peruvian chicken place, pho restaurants, sushi restaurants with gluten-free soy sauce, Korean BBQ restaurants, hot pot restaurants with gluten-free options, Chick-fil-A, Nando’s Peri Peri, PF Chang’s) and I usually stick with those and offer them as options when going out with friends or when I would go out with my ex. Usually they are cool about it, if someone suggests a place to go to I usually do a lot of research beforehand and call the restaurant to ask about the kitchen and how the food is prepared and if they don’t feel confident in the cross contamination or if I don’t feel comfortable I will tell my friends/significant other. I also can’t have any dairy so that adds another layer of complication. I’m not married so I’m sure it’s tricky if your wife wants to go out to her favorite restaurant and there aren’t any options for you - I probably wouldn’t feel comfortable either. Once you find the places you can trust I say stick with them, that’s the safest option. I also look up reviews online and on the Find Me Gluten Free app to see what other people with Celiac’s have to say about the restaurants (it’s kind of like a Yelp for Celiac’s). Anyways, I basically deal with it by researching, calling the restaurants, and then forcing myself to feel comfortable telling my friends/significant other whether or not I feel safe eating there. I’ve run into issues where friends of my significant other were inconsiderate but usually I’ve been lucky with kind friends and living in a metropolitan area with lots of food options. If I didn’t, I would probably try to eat beforehand and then just get a soda or drink while my friends/significant other ate, essentially what you do now. I’m not sure what else I would do...I’m probably not being much of a help...

[vvicin02]

Grlybrainiac - you have been very helpful. I enjoy hearing how other people handle this kind of stuff. I personally don't know many like me who I can share my experiences with so I am sort of floundering. I guess I am still new at this and have decided to play it safe with my diet. I am just waiting to see if I have really improved with a full year under my belt and see if I am really healing. I hope to more out going once I know I am doing things correctly with my diet - sometimes I wonder..lol

[Grlybrainiac]

4 hours ago, vvicin02 said:

Grlybrainiac - you have been very helpful. I enjoy hearing how other people handle this kind of stuff. I personally don't know many like me who I can share my experiences with so I am sort of floundering. I guess I am still new at this and have decided to play it safe with my diet. I am just waiting to see if I have really improved with a full year under my belt and see if I am really healing. I hope to more out going once I know I am doing things correctly with my diet - sometimes I wonder..lol

Yeah it took me about a year to figure everything out too, I’m about 2 years and 3 months into my diagnosis. The first year was the worst - this is off topic but also check your personal care products, I cut gluten out of my diet but didn’t realize my lotion had oats, my chapstick and body wash and hairspray had wheat in it, etc. I also realized that dairy made me really sick and I cut that out too. Once I cut out the personal care products and dairy in addition to the gluten food products, I felt a TON better, even gained back the 10lbs I lost. After that, now I can tell the second I’ve been glutened/dairyed and can immediately stop eating whatever it is. Anyways, hang in there - it does get better!! Like you said maybe for now you can just stick with eating at home till your body heals and calms down, then you can try experimenting. It was really hard for me at first, I’m the type of person who goes with the flow and doesn’t speak up about what I need for fear of inconveniencing others. The way I try to make myself comfortable with it is I think of it as being my own mom. If I had a kid who was diagnosed with Celiac’s, wouldn’t I advocate for them? It’s so awkward sometimes, especially when you have to tell your significant other that you can’t kiss them for about 4 hours because they just ate pizza, makes you seem a bit weird but hey it’s our medical issue so, it’s what we have to do I guess...our new reality lol. 

[Rob S.]

I suggest you get yourself the NIMA tester of you need to eat out. I travel quite a bit and it has saved me plenty of times. I was just at a place that professed to be entirely gluten free. My food failed. Cross Contamination? Maybe a cook who just ate lunch at mcdonalds and did not wash his hands? A supplier cutting corners?