• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Just Want To Be Able To Eat Out Like A "normal" Person!
0

26 posts in this topic

I'm so frustrated and just need to vent!  Sigh...sigh...

 

I just want to be a normal person again...be able to go out to eat without feeling scared or getting sick.  I've eaten out 3 times since my diagnosis.  The first time was Red Robin were I got glutened and I was sick for a week.  Ugh!  Then looked into restaurants that are good for celiacs and decided to try Chipotle.  It was great.  The person washed their hands, changed gloves and spoons and one person took my meal through the whole thing.  I went super simple.  Rice, beans, chicken and pico.  Didn't get sick...so happy.  I did worry the whole time...but it was all good.  Last night I decided to try Outback...also on the list of good restaurants.  They had a gluten free menu, the waiter was great, the chef's wife has celiac....should be good, right?  I went simple again.  I ordered a steak, grilled asparagus and a baked sweet potato.  Started feeling bad last night.  The first thing that happened is my rib pain on the left side came back, then nausea, GI issues, pain, fuzzy head, headache.  

 

I'm so frustrated and sad!  Sad because the meal wasn't great and was absolutely not worth being glutened for.  Frustrated because I want to be able to enjoy this kind of stuff in my life.  So now, I'm sitting here, not feeling good, sipping ginger tea and hoping I will be able to get through the day including my son's first soccer game of the season this evening.

 

Anyone else feel the same?  Thanks for letting me vent...

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Anyone else feel the same?  Thanks for letting me vent...

 

Not for a very long time, but sure I remember the early glutenings vividly from attempting to order safely and still getting hit.

 

If you are unsure of a restaurant, i strongly suggest bringing your own food and just ordering a nice cocktail or fancy coffee drink.

 

For me, I developed more intolerances and was unable to dine out safely anywhere so I started bringing my own and a funny thing happened -- I could go out with my friends or family and simply relax and have a nice conversation that didn't revolve around gluten or celiac. 

 

Hang in there -- it gets easier to eat out safely with time if gluten is the only thing you need to avoid completely.

 

For now, lots of water, maybe another few teas and rest!  I hope you'll be feeling better very soon :)

0

Share this post


Link to post
Share on other sites

definitely makes you a better cook  :( 

 

my sister is the office manager of a (not a chain) restaurant and they are doing a gluten free menu.  sure, the ingredients are gluten free, but with shared prep areas and grill.  she threw a fit, for like, a year, until they cleaned up their act.  so, they finally went over everything and she told me it was safe for me to try next time I go to nj (and she's all proud of herself and stuff)  then she txt me and wants a good recipe for flatbread.  ummmm.....  oh, do they do their own baking in house?  where is that area?  smh!

 

(I don't eat out much)(but I am a great cook! ^_^ ) 

0

Share this post


Link to post
Share on other sites

I have dined out successfully (and I've also been bitten on the ass a few times.) It happens 

 

Good experiences at PF Chang's, Bonefish Grill, Bistango in NYC, Naked Oyster in Hyannis Mass. etc.!

 

I go to places vetted by other celiacs on Find me Gluten Free.

 

I am normal...this is just the "new normal". You may have to get past thinking we are not normal people. :D

It is true: we can't be "spontaneous"--yes, that's for sure. 

 

Sorry you do not feel well, but know this: you can dine out and enjoy life once more. 

 

I choose carefully where I go, and I do prefer cooking at home because I am pretty good at it. (just ask the hubs and my fam and friends) lol

I have had friends cook for me too--they learned how to do it safely. When you feel better,I can tell you how.

 

Hang in there. 

0

Share this post


Link to post
Share on other sites

Yes! I was glutened a lot eating out and someone here said they didn't eat out at all year one. I wish I had known that earlier. It's the pits. My body also developed multiple intolerances and I stopped eating out except for one restaurant that has been very reliable (for special occasions) and I still feel better preparing my own food. I consider eating out a risk at this point.

Friday night, while on vacation, I did take a big risk and ate sashimi at a Japanese restaurant after speaking to the manager and sushi chef. The following night, friends and hubby encouraged me to take more risks but I felt lucky to have gotten away with the one so held my ground. It just felt so good to dine with friends and I had such a nice time that I didn't want to ruin it.

I have not developed the bravery yet to bring my food into a restaurant. Last year at a wedding, a gluten-free restaurant prepared my food that I then took to the wedding. It was awkward but once it was on the plate, I was home free. I feel less awkward as time moves on and Saturday night I enjoyed everyone's company with an empty placemat in front of me.

Because of Friday night's success story, I was tempted to try Red Robin yesterday but we didn't have time to stop. Now, after reading your post, I'm glad! I don't know what I was thinking. (Probably that I'm FREE!) It's difficult not to roll a successful evening into more daring feats of courage. I become emboldened and then *whack*! It hurts.

I hope you feel better soon. Try not to be hard on yourself. Easier said than done sometimes. Nurture, nurture.

0

Share this post


Link to post
Share on other sites
Ads by Google:


Thank you all so much for your nice responses and not calling me a whiner...I know I'm being whiny. I'm doing my best to take care of myself. Making some chicken soup for dinner.

0

Share this post


Link to post
Share on other sites

This is a safe place to whine. Whining here keeps me more civil in the public arena ;). Everyone should be so lucky, eh?

0

Share this post


Link to post
Share on other sites

I haven't eaten out, for dinner, for almost 2 years... I feel your pain.  For me, it's partially because of my kids who are gluten-free. They are picky eaters and don't want fish, steak or salad for dinner. They want pizza, noodles, grilled cheese, muffins, cakes, or fries... that's not going to work in 99% of all restaurants, so we stay in.

 

But what I wouldn't give to order a pizza on nights when I feel lazy!  Sigh.

0

Share this post


Link to post
Share on other sites

I don't eat out like a "normal person" But I do eat out occasionally.  I go to places that I have found to be safe like - Bonefish, Outback, PF Changs, Pei Wei, MInsky's, California Pizza Kitchen, Beau Jo's, etc.  I have gone to a couple of higher priced restaurants and done well there, too.    I haven't tried Red Robin but they have good gluten-free practices.  I just don't go out for burgers when we make good ones at home.  Probably go there when out of town.

0

Share this post


Link to post
Share on other sites

I haven't eaten out, for dinner, for almost 2 years... I feel your pain.  For me, it's partially because of my kids who are gluten-free. They are picky eaters and don't want fish, steak or salad for dinner. They want pizza, noodles, grilled cheese, muffins, cakes, or fries... that's not going to work in 99% of all restaurants, so we stay in.

 

But what I wouldn't give to order a pizza on nights when I feel lazy!  Sigh.

Pizza crusts freeze rather nicely! Whip up a bunch of gluten free crusts and toss 'em in the freezer...then make the kids sauce and top 'em.

 

Sure, you'll have a mess to clean up, but all you'll have to do for prep work is preheat the oven and fetch a crust out of the freezer.

0

Share this post


Link to post
Share on other sites

I don't eat out like a "normal person" But I do eat out occasionally.  I go to places that I have found to be safe like - Bonefish, Outback, PF Changs, Pei Wei, MInsky's, California Pizza Kitchen, Beau Jo's, etc.  I have gone to a couple of higher priced restaurants and done well there, too.    I haven't tried Red Robin but they have good gluten-free practices.  I just don't go out for burgers when we make good ones at home.  Probably go there when out of town.

 

"Normal" is overrated.  My celiac kids eat out all the time...but it was a tough learning curve for them.  Teens don't like to stand out and males don't generally like to call attention to their physical limitations.  They figured out what they needed to be safe after several gluten hits.  Unfortunately, knowing how to select restaurants and talk to restaurant staff is not enough to prevent every accidental glutening, but you certainly can learn to better your odds and eat out safely.

1

Share this post


Link to post
Share on other sites

"Normal" is overrated.  

 

 

that is true!  Normals eat all kinds of sketchy things and then wonder why they don't feel so great later that afternoon!   :lol:

0

Share this post


Link to post
Share on other sites

that is true!  Normals eat all kinds of sketchy things and then wonder why they don't feel so great later that afternoon!   :lol:

 

true dat :lol:  

0

Share this post


Link to post
Share on other sites

Normals eat all kinds of sketchy things and then wonder why they don't feel so great later that afternoon!   :lol:

My husband says that all the time and thanks me for "not being normal" because he feels so much better now! :)

The people I just spent time with were saying things like, "You're so lucky", "You are really doing it right", "I've given up gluten partially but am too lazy to go 100%" and I was asked for advice or was a sounding board for other's ills. I didn't get specific on personal details because it's not exactly dinner table conversation, but, there are a lot people out there who don't feel well and believe giving up gluten is the answer. One of the women had a doctor tell her to go Paleo. That kind of blew me away. At least in some circles, "normal" may be changing.

I didn't feel the need to differentiate the disease from the diet. They seemed to believe it was all on a spectrum and that the diet was to avoid illness. Who am I to argue? My idea of utopia is that everyone stops eating gluten and then we won't have to deal with the restaurant/social issues anymore!

0

Share this post


Link to post
Share on other sites

I didn't feel the need to differentiate the disease from the diet. They seemed to believe it was all on a spectrum and that the diet was to avoid illness. Who am I to argue? My idea of utopia is that everyone stops eating gluten and then we won't have to deal with the restaurant/social issues anymore!

That's not likely to ever happen. (as wonderful as it would be for us). The vast majority of the world's population does not have a gluten issue (despite what the " experts" out there say on the internet). I once thought everyone did too, I even remember posting early in my time on here  saying" I bet we all have NCGS on some level"....but research and reality proves otherwise.

 

Looks like we're just very, very special.  :D

0

Share this post


Link to post
Share on other sites

That's not likely to ever happen. (as wonderful as it would be for us). The vast majority of the world's population does not have a gluten issue (despite what the " experts" out there say on the internet). I once thought everyone did too, I even remember posting early in my time on here  saying" I bet we all have NCGS on some level"....but research and reality proves otherwise.

 

Looks like we're just very, very special.  :D

Yeah, I know we're special (ha ha) & wouldn't wish this on anyone but I'm not going to argue someone out of going in the direction of my utopian dream! I'm still a romantic at heart (and horribly selfish) and will continue to click my ruby red slippers :D

0

Share this post


Link to post
Share on other sites

Yeah, I know we're special (ha ha) & wouldn't wish this on anyone but I'm not going to argue someone out of going in the direction of my utopian dream! I'm still a romantic at heart (and horribly selfish) and will continue to click my ruby red slippers :D

 

 

lol  ok Dorothy, I hear ya......I share your dream of a gluten-free world ...but just recall...eventually she woke up and found herself right back in Kansas (no offense, Miz  K) 

0

Share this post


Link to post
Share on other sites

Pizza crusts freeze rather nicely! Whip up a bunch of gluten free crusts and toss 'em in the freezer...then make the kids sauce and top 'em.

 

Sure, you'll have a mess to clean up, but all you'll have to do for prep work is preheat the oven and fetch a crust out of the freezer.

Thanks. :). We make pizza airily regularly, it's just that "make" thing.... It would be a treat not to have to make the food. KWIM? Just open a box when I get home rather than having to use the oven.

0

Share this post


Link to post
Share on other sites

and shoeless

Huh huh huh - hang ten!

0

Share this post


Link to post
Share on other sites

lol  ok Dorothy, I hear ya......I share your dream of a gluten-free world ...but just recall...eventually she woke up and found herself right back in Kansas (no offense, Miz  K) 

 

 

in the middle of a wheat field!

0

Share this post


Link to post
Share on other sites

Not for a very long time, but sure I remember the early glutenings vividly from attempting to order safely and still getting hit.

 

If you are unsure of a restaurant, i strongly suggest bringing your own food and just ordering a nice cocktail or fancy coffee drink.

 

For me, I developed more intolerances and was unable to dine out safely anywhere so I started bringing my own and a funny thing happened -- I could go out with my friends or family and simply relax and have a nice conversation that didn't revolve around gluten or celiac. 

 

Hang in there -- it gets easier to eat out safely with time if gluten is the only thing you need to avoid completely.

 

For now, lots of water, maybe another few teas and rest!  I hope you'll be feeling better very soon :)

Thanks for your positive thoughts...today is definitely better than yesterday.

0

Share this post


Link to post
Share on other sites

definitely makes you a better cook  :(

 

my sister is the office manager of a (not a chain) restaurant and they are doing a gluten free menu.  sure, the ingredients are gluten free, but with shared prep areas and grill.  she threw a fit, for like, a year, until they cleaned up their act.  so, they finally went over everything and she told me it was safe for me to try next time I go to nj (and she's all proud of herself and stuff)  then she txt me and wants a good recipe for flatbread.  ummmm.....  oh, do they do their own baking in house?  where is that area?  smh!

 

(I don't eat out much)(but I am a great cook! ^_^ ) 

I'm so thankful that I already loved to cook!  That's really helpful.  I do miss the easy convenience of being able to grab something, especially on busy sports nights.

0

Share this post


Link to post
Share on other sites

Yes! I was glutened a lot eating out and someone here said they didn't eat out at all year one. I wish I had known that earlier. It's the pits. My body also developed multiple intolerances and I stopped eating out except for one restaurant that has been very reliable (for special occasions) and I still feel better preparing my own food. I consider eating out a risk at this point.

Friday night, while on vacation, I did take a big risk and ate sashimi at a Japanese restaurant after speaking to the manager and sushi chef. The following night, friends and hubby encouraged me to take more risks but I felt lucky to have gotten away with the one so held my ground. It just felt so good to dine with friends and I had such a nice time that I didn't want to ruin it.

I have not developed the bravery yet to bring my food into a restaurant. Last year at a wedding, a gluten-free restaurant prepared my food that I then took to the wedding. It was awkward but once it was on the plate, I was home free. I feel less awkward as time moves on and Saturday night I enjoyed everyone's company with an empty placemat in front of me.

Because of Friday night's success story, I was tempted to try Red Robin yesterday but we didn't have time to stop. Now, after reading your post, I'm glad! I don't know what I was thinking. (Probably that I'm FREE!) It's difficult not to roll a successful evening into more daring feats of courage. I become emboldened and then *whack*! It hurts.

I hope you feel better soon. Try not to be hard on yourself. Easier said than done sometimes. Nurture, nurture.

I also don't have the confidence to bring my food in with me...I'm sure that will come.  I normally carry a bag of almonds everywhere now. Good for you on vacation to take the chance and be able to enjoy it.  I'm so glad it worked for you!

0

Share this post


Link to post
Share on other sites

I haven't eaten out, for dinner, for almost 2 years... I feel your pain.  For me, it's partially because of my kids who are gluten-free. They are picky eaters and don't want fish, steak or salad for dinner. They want pizza, noodles, grilled cheese, muffins, cakes, or fries... that's not going to work in 99% of all restaurants, so we stay in.

 

But what I wouldn't give to order a pizza on nights when I feel lazy!  Sigh.

This I completely get.  We've been doing pizza/movie nights on Fridays forever.  We take turns picking the pizza and movie and all chill out.  I miss that.  It was nice to just order in and do nothing.  LOL!  I've made some pizzas at home now, but they aren't as good or as convenient.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      106,460
    • Total Posts
      930,678
  • Member Statistics

    • Total Members
      63,884
    • Most Online
      3,093

    Newest Member
    Mato Sapa
    Joined
  • Popular Now

  • Topics

  • Posts

    • Hi Steph and welcome I'm yet another Brit, funny how the alcohol threads flush us out I don't drink now but after a big night I used to get truly savage all day hangovers, much worse than those of my friends. They could include splitting headaches, vomiting, nausea, a 'fuzziness' in my head, sweats etc.  After I put the pieces together and went gluten free I had a 'big night' on cider only and the next day was a revelation. What I'd thought was a 'normal' hangover was, for me at least, anything but. With gluten out of the equation hangovers were a breeze! The difference was mind blowing and just one more example of how gluten had been messing with me over the years. So when I read your post my first thought was that there was some trace gluten contamination going on. However: Obviously you've been at the diet for some considerable time now and know the score. I know Coeliac UK are firmly of the opinion that all spirits are safe but some (note some this a contentious one :D) members here will tell you they react to gluten based grain spirits for instance which distillation should render safe.  Then there's the dangers of shared lines if you're drinking say Strongbow in a pub as alluded to above. Lastly it its wine, there's the often cited but maybe apocryphal these days 'flour to seal the casks' possibility. Finally there's bar snacks, maybe a brand of nuts etc that you snack on that may have changed their production process? I'm sure you've thought of these already, but it may be useful if you post your alcoholic drink choices / bar snack of choice up here maybe someone will have some input?.   The second thing which leapt out was: Would you class yourself as super sensitive to cross contamination etc? Firstly that would make the cross contamination theory more compelling. You could test that out by having a drink at home under controlled circumstances to see whether the same issue arises? That could also answer the quantity question. Does one safe drink trigger it, two, three etc? Finally, and this is one that I find difficult, knowing you have the gluten issue may lead you to assume it's that when it could be something else. I tend to attribute EVERYTHING in the world to gluten these days due to it being able to affect me in so many different ways. Crisis in Korea? Gluten. Russian tanks massing on the Ukrainian border? Check their wheat intake. Global warming? etc. So it may make sense to pursue some other ideas at the same time. Try:  http://goaskalice.columbia.edu/answered-questions/suddenly-drinking-alcohol-makes-me-sick http://www.steadyhealth.com/topics/very-abnormal-hangovers-thinking-it-could-be-allergy-to-alcohol Cheers Sorry, best of luck! Matt  
    • Similarly, I've been vegetarian for 25+ years.  A 2015 Nature study connecting emulsifiers with microbiome changes has me wondering about the processed foods that I ate in the past, and I wonder about the wisdom of eating as much seitan as I did.  I mostly prefer my post-diagnosis diet since it forces me to consider every ingredient and to cook from scratch more.
    • LOL, that might put it into perspective if I explain it that way. 
    • I am very interested in this too. My daughter tested negative for celiac, but has terrible primarily neurological symptoms. Because she tested positive for SIBO at the time and was having some GI symptoms, I was told it was just a Fodmap issue.  I knew better and we have been gluten free for 2 years.  Fast forward to this February. She had a SIBO recurrence that I treated at home with diet and herbal antibiotics because I couldn't get the insurance referral. She was doing great. Then stupid me brought in gluten containing chick feed for the new baby chicks we got.   Feed dust everywhere. Total mess.  Really, no GI symptoms (she was SIBO free by then)...but the neurological symptoms! my daughter couldn't walk for three days. Burning down one leg, nerve pain in the foot. Also heaviness of limbs, headache and fatigue. Better after three days. But unfortunately she had a TINY gluten exposure at that three day mark and had another severe reaction: loss of balance, loss of feeling in her back and arms, couldn't see for a few seconds, and three days of hand numbness, fatigue, concentration problems.  Well, I actually contacted Dr. Hadjivassilou by email and he confirmed that the symptoms are consistent with gluten ataxia but any testing would require a gluten challenge. Even with these exposures, antibodies would not be high enough.  His suggestion was maintain vigilance gluten free.  I just saw my daughter's GI at U of C and she really only recognizes celiac disease and neurological complications of that. But my impression is that gluten ataxia is another branch in the autoimmune side of things (with celiac and DH being the other two).   At this point, I know a diagnosis is important. But I don't know how to get there. We homeschool right now so I can give her time to heal when she is accidentally glutened, I can keep my home safe for her (ugh, that I didn't think of the chicken feed!)  But at some point, she is going to be in college, needing to take exams, and totally incapacitated because of an exposure.  And doctors state side that are worth seeing?  Who is looking at gluten ataxia in the US?
    • Caro..............monitoring only the TSH to gauge thyroid function is what endo's do who don' t do a good job of managing thyroid disease.  They should do the full panel and check the actual thyroid hormone numbers.........T3 and T4. The importance of the TSH comes second to hormone levels. In order to track how severely the thyroid is under attack, you need to track antibody levels.......not the TSH. I did not stay with endocrinologists because I found they did not do a very good job and found much greater help and results with a functional medicine MD.  You should not have a goiter if your thyroid is functioning well and your TSH is "normal".  Maybe they should do a full panel? Going gluten free can have a profound affect for the better on thyroid function and that is something that is becoming more and more accepted today.  Ask most people with Celiac and thyroid disease and they will tell you that. My thyroid never functioned well or was under control under after I discovered I had Celiac and went gluten free.  It was the only way I got my antibody numbers back down close to normal and they were around 1200 when it was diagnosed with Celiac.  I was diagnosed with Hashi's long before the Celiac diagnosis.  I am not sure Vitamin D has anything to do with thyroid antibodies but who knows?  Maybe it does have an affect for the better. It is really hard to get Vitmain D levels up, depending on where you live. Mine are going up, slowly, even after 12 years gluten-free but I live in the Northeast in the US and we don't have sun levels like they do in the South.  I take 5,000 IU daily and that is a safe level to take, believe it or not.  I get no sun on my job so the large dose it is! Having Celiac Disease should not stop you from being able to travel, especially S. America. I travel, although I do agree that some countries might be very difficult to be gluten free in. You can be a foodie and travel with Celiac so no worries on that front. You may not be able to sample from someone else's plate, unless they are eating gluten-free too but I have had awesome experiences with food when traveling so you can too!
  • Upcoming Events