I think I need to stop eating in restaurants

[sandree33]

I have been trying to eat in restaurants as all of my socializing generally takes place over food. But I find that no matter how I try to interview the wait staff, find restaurants with gluten-free menus etc., I keep getting glutened. Our part of the world (Reading, PA) is not very allergy friendly. Even at the few restaurants that have gluten-free items, they usually say they can’t guarantee anything. And I do try so hard to eat something safe. I also am unable to eat dairy and corn, and this is even harder to suss out. This is resulting in severe insomnia and interstitial cystitis type symptoms as well as the usual brain fog and pain symptoms. I don’t want to give up socializing. Does anyone bring most of their food with them? I’m contemplating this even though it is hard to give up the idea of the treat of eating out. Even going to people’s houses, I find that they try to accommodate me, but they don’t know enough and then after all their effort, I have to say no to something they made. Feeling frustrated!  Sandy

[Mari]

Not long ago when I would occasionally meet friends for a dinner out I would order a baked potato and Lettice and some mayonnaise, oil and vinegar. Now I would also take a capsule of an anti-gliadin enzyme after eating some and might take another capsule at the end of the meal.  The capsules that I keep on hand are the ones that are advertised here - GliadinX. The enzymes only work when the food is in your stomach. This is only good for cross contamination. Also you may need tostop drinking any alcoholic beverages before and during the meal as alcohol could denature the enzymes. I imagine that you will be more creative in choosing you standard meal(s) that keep you as safe as possible. 

[decades]

Welcome.  I ate at restaurants and people's homes for many years after I was diagnosed, and I felt bad a lot.  For years.  I considered it cheating, but it was not worth it.  Restaurants and friends may mean well, but they're correct when they tell you that they can't guarantee anything.  I had a girlfriend who would get angry when I looked at ingredients lists on food she was preparing and she'd say "Do you think I'm trying to poison you?"  My own mother would say "Oh I just put in a little bit of flour, it's not much."  But it has to be ZERO.  Don't play around!  If you had a friend on crutches who couldn't climb stairs to get in to a restaurant, would you say, "C'mon, it's just a few stairs, it's no big deal, suck it up!"?  No.  A true friend would not say that.  Also, once you make it ZERO, it's a relief, because you don't have to play around or fret about socializing, or wonder if you can get away with just feeling a little bad.  That part is over.  

[MrsGFDF]

It must be hard to make safe choices when out at  different places all the time! I don't leave home without a safe  bar in my purseI  RESTAURANT.  I  look at online menuand reviews  Findmeglutenfree.com.  Especially if each item isn't labelled as gluten-free/DF or it has an unsafe review, I bring my own.  I think restaurants don't atually allow outside food so I very discreetly bring what I've brought out after everyone is served.   HOMES.   I explain to the host that while their menu sounds lovely and I don't want to be trouble, I have to be careful to prevent getting sick and it is no trouble for me to bring my own.  WHAT TO PACK.  I try to bring items beings served on the menu so I feel less "left out" of the fun or easy to pack items like a pocket bread sandwhich.  It is still hard to not be able to eat whatever I want or "cheat", but I was so ill before diagnosis that it isn't worth it to me  Good luck!  

[Daisy1010]

My husband only orders steak, plain, no marinade or seasonings, lettuce salad and plain baked potato. We take our pure butter, his salad dressing and homeade 57 steak sauce . We use little tupperware cups, in a baggie in my purse. Rarely eat Mexican, but can be gluten-free and oil free for hubby. He often takes his own lunch with others who know him, or orders iced tea!!

[decades]

On 5/12/2024 at 9:57 PM, decades said:

Welcome.  I ate at restaurants and people's homes for many years after I was diagnosed, and I felt bad a lot.  For years.  I considered it cheating, but it was not worth it.  Restaurants and friends may mean well, but they're correct when they tell you that they can't guarantee anything.  I had a girlfriend who would get angry when I looked at ingredients lists on food she was preparing and she'd say "Do you think I'm trying to poison you?"  My own mother would say "Oh I just put in a little bit of flour, it's not much."  But it has to be ZERO.  Don't play around!  If you had a friend on crutches who couldn't climb stairs to get in to a restaurant, would you say, "C'mon, it's just a few stairs, it's no big deal, suck it up!"?  No.  A true friend would not say that.  Also, once you make it ZERO, it's a relief, because you don't have to play around or fret about socializing, or wonder if you can get away with just feeling a little bad.  That part is over.  

I suppose I should also introduce myself.  My name is Steve.  I was first diagnosed at age 14, by an allergist.  She did not use the word "celiac."  What she said was "Don't eat wheat at all, ever."  I was not told about the effects.  This was before the internet, and before any "Gluten-Free" foods were available.  I went to the library and read cookbooks and found no information.  I asked my regular doctor, and he had nothing to tell me.  I had always felt bad, though, and here was a concrete thing I could do something about.  But as I said above, I "cheated."  I continued to eat pizza, eggrolls, and pasta.  And I felt nauseated and my head hurt and I felt logy all the time.  I would stop eating wheat for two days and "save it up" for a big night of pasta at a restaurant.  I thought whole wheat was okay.  I thought barley and rye were okay.  I would buy oatmeal cupcakes and think they were okay.  I knew nothing.  And I felt bad all the time.  I started getting serious about it after about 15 years, but never 100%.  Then the internet became a thing, and I found some info.  Finally, after a few decades, I got a biopsy, waited two weeks, then went back for a diagnosis and was told, "yeah, you have celiac, look on the internet," and the doctor literally walked me out of his office.  Since then, every doctor I've seen is vaguely aware of celiac and has nothing to say except to not eat wheat.  I had to do research on my own to learn just how serious celiac is, how the villi get destroyed, how even the tiniest amount of wheat can harm you and make you feel terrible.  I was glad to find out that numbness of the extremities is a symptom of celiac, because my fingers always got numb, and it seemed so odd and disconnected a symptom, but it is real, so in a way it was further confirmation of the celiac.  I'd say I'm about 99% off wheat, barley, rye and oats (yeah, I know some processed oats are okay, but I just don't eat any), but last week I accidentally stirred some rice that previously had been used to stir pasta, and all the symtoms came back for three days  I felt horrible, enervated.  So that's it.  100%.  And I'm glad I found this site, which you'd think I would have done sooner.  I guess I thought I was okay!

[Patty harrigan]

I stopped eating out 5 years ago….sadly. I have a friend who owns a number of successful restaurants in NYC. Many years ago at my behest, he completed Columbia Celiac Center’s “training” and developed beautiful menus at his restaurants. HOWEVER, he feels that mistakes will happen in a busy kitchen no matter how hard they try, no matter how much they train. Vendors that were safe change products. It’s a crapshoot I’m no longer willing to take unless the restaurant has a dedicated kitchen. The price I pay is far too high. I have taken a sandwich or container of food with me to join family and friends if I have to go out and only at a casual place. I take the waitstaff aside and tell them I have severe allergies and they have always been kind. It’s never been a problem. But if that doesn’t work for you, stay simple as has been suggested. Go early before the kitchen gets ripping. When eating at family and friends I take my own dinner. 

[Flash1970]

I almost always take my own food when I go to someone's home.  No one seems to mind.  If I go to a restaurant,  I usually eat salad and maybe a steak if I know the place.  I always bring my own dressing.  My friends and family do not mind.  They know how sick I get. If there's not anything I can eat,  I just wait until I get home.  I know I'm not going to starve. Not worth getting sick.