Jump to content
  • 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

Eating Out In General


blahblah

Recommended Posts

blahblah Explorer

There are not many gluten free specific places so anywhere else will have a risk of cc. Should celiacs avoid these restuarants all together or risk cc. It is stupid not to join the family or whatever so I run the risk.


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



Celiac.com Sponsor (A8-M):



nvsmom Community Regular

It varies by restaurant.  Some restaurants can handle keeping a celiac safe, usually the higher end the restaurant the better chances are of staying safe.  

 

It is always best to bring a bit of food with you if a restaurant is "iffy", or just have drinks with people.  Ceiacs often have to make the shift from going for the food, to going out for the company.

cyclinglady Grand Master

I think it is a personal choice. If you are a newbie, I would avoid eating out. Each "glutening" will cause an autoimmune flare-up that can last for days or weeks which can set you back on path to healing. Later, you can experiment more when you think the risk is worth it.

At over two years in, I rarely eat out. Unfortunately, there are no close gluten-free restaurants nearby. I chose high end restaurants after a discussion with the manager and head chef or chose a chain that has had some training (e.g. Spaghetti Factory, PF Chang's, Outback....). Even then, I talk to the manager every single time.

My hubby has been gluten-free for 14 years. He will not eat out prior to any seminars (he does training), the risk is too great! We take chances when we know we can take the time to recover from a Glutening.

I always have shelf-stable food/snacks in my purse. If with a group of gluten-eaters, I order a drink and head to the car where I pack a cooler and tailgate it. I also bring in food in a cute purse cooler depending on the situation. It works!

Jays911 Contributor

I, too, find that the higher end the restaurant, the better your chances.  Luckily, Omaha has a great many good to great restaurants with gluten free menus.  As others have mentioned, however, it is always good to specifically address gluten-free issues with staff and to let them know that is not a choice for you, but a requirement.  In addition to the other chains mentioned above, Jason's Delis also have good gluten-free options, and maintain UDI's bread for their sandwiches.  I also highly recommend the find me gluten-free app for Iphones,

cyclinglady Grand Master

I, too, find that the higher end the restaurant, the better your chances.  Luckily, Omaha has a great many good to great restaurants with gluten free menus.  As others have mentioned, however, it is always good to specifically address gluten-free issues with staff and to let them know that is not a choice for you, but a requirement.  In addition to the other chains mentioned above, Jason's Delis also have good gluten-free options, and maintain UDI's bread for their sandwiches.  I also highly recommend the find me gluten-free app for Iphones,

On the FIND ME GLUTEN FREE site, read the reviews. Find the ones written by celiacs or NCGIs. Often it is just a gluten-free dieter who posts a review and is not concerned about cross contamination. Better yet, write reviews when you get a chance and help others who must seriously avoid gluten!

StephanieL Enthusiast

We have more than Celiac to deal with and while we don't eat out often, when we do we choose one of several options.

 

1) Red Robin

2) Chipotle

3) Higher end with a Chef, not just cooks.

 

We *may* eat out as a family once a month or so.  In the last 4 years the only time we've had an issue it was minor, not believed to be gluten related and happened at Disney where we were eating out a LOT more than usual. 

 

HTH

notme Experienced

bonefish.  it'a a little pricey, but i figure i save money by packing my own food for other meals.  some of them have chefs who will fix something special that you want (i wanted something off the 'special of the day' menu, so he/she tweaked it to be gluten-free)  i've been lucky enough to find a bonefish in most cities i've traveled to.  except tuscaloosa.  tuscaloosa is the waste lands lololz pack a cooler  :D


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



Celiac.com Sponsor (A8-M):



Boatguy Newbie

We don't eat out nearly as often now that I have become extremely gluten intolerant.

Our options are very limited because we live in a rural area.

I used to love Chipotles. I was thrilled to see they had gluten-free options. Unfortunately it has not worked out well with Chipotles. I was dosed three consecutive times. That's it, no more.

The only other common option available to us is the Olive Garden. After a dozen or more visits I was dosed once by the Olive Garden. I imagine it was due to cross contamination as with Chipotles.

On the plus side both my wife and I have become very skilled at preparing gluten free food at home. Tonight we will throw two steaks on the charcoal grill with microwave baked potato. Very simple and no gluten!

  • 3 months later...
JennyD Rookie

Boatguy,

I too had a similar experience with Chipotle and have since learned a few tricks... If I eat there I go about 15 to 30 minutes after they open only, never during or after a rush. Its not too busy and they have had a chance to cycle through last nights food so its fresh. Also I always always explain that I have a "Wheat Allergy" (Its celiac but they get wheat allergy, Ive had more luck with this) and ask if they can wash their hands and change their gloves and make my entire bowl without handing it off. They give you weird looks but this is actually in their company policy and quite a few employees are aware, after a few times they get to know you and just start on the routine on sight. I have still been glutened like this but only twice in 2 years so its a MUCH lower risk. Hope this helps :) Chiptole is a favorite for me, giving it up would be difficult.

gilligan Enthusiast

Chipotle must vary by location.  Every time I go there, they wash hands and change gloves, and one person walks down the line with my order without asking.  

  • 4 weeks later...
lauramac Newbie

I'm a new likely Celiac (multiple positive blood test results came in the beginning of October, but no biopsy at this time) and haven't gotten to talk to a specialist yet (I have an appointment in late November).   I've been reading the Mayo Clinic's book Going Gluten Free and have been removing gluten from my diet as per their recommendations.  I don't really understand how extensive the impact is from cross-contamination, but I've been trying to avoid it.

I was so frustrated last night when I did everything I could to ensure a gluten-free meal.  My friends and I went out and I made sure that the restaurant had a gluten free option (a club sandwich w/gluten-free bread).  After informing the server that I had Celiac and would need gluten free food, I ordered the gluten-free bread, asked for cheddar cheese instead of American (as I've read American cheese can be processed with wheat), and paid extra for a side salad (instead of fries, which were cooked in the same oil as their fried chicken), with balsamic vinegar (to avoid potential gluten in the salad dressing).  What did he drop off?  A salad covered in croutons.  When he returned he asked if I wanted it boxed up and I said no, because I couldn't eat it because of the croutons (which were not mentioned on the menu).  He took it and still charged me. 

This episode brought up so many things for me. I used to be one of the people who gave the side-eye to anyone claiming that they needed gluten-free.  I am now the person who requires it. I feel like jerk who is experiencing a heavy dose of karma. My old attitude plus the incredulousness of others, makes me so angry. Giving up gluten isn't a fun fad, it's a permanent adjustment that is difficult.  Having to worry about cross-contamination and people not taking your illness seriously based on their own idea of what qualifies as legitimate is maddening.  I don't feel safe eating out at restaurants that are anything but completely gluten-free, which further adds to my frustration about the lifestyle changes I'm having to adopt. I don't want to hold others hostage with my food limitations, but at the same time, I want to be safe and protect my body. How do you make the cultural adjustment? How do you feel safe?

 



 

julissa Explorer

I eat out with my family often, I pack my meal, take it in a purse-like looking little cooler bag. when orders are  being taken i just tell the waiter that I am not ordering. they don't care. when the food comes I whip out my meal and eat. ( I bring my own plate, etc.) they don't care. 

I ask no permission. I ask no forgiveness. there is NO meal worth it to me to be sick for 2 weeks. no waiter has ever said a word. 

cyclinglady Grand Master

Laura,

You should continue to consume gluten until all testing is complete.  

http://www.cureceliacdisease.org/archives/faq/why-do-you-insist-i-eat-gluten-for-a-diagnosis-when-i-feel-better-on-a-gluten-free-diet

lauramac Newbie

Laura,

You should continue to consume gluten until all testing is complete.  

Open Original Shared Link

Hi Cycling Lady,

I was concerned about that, but when I called and spoke to the G
astroenterologist and my Primary Care Provider, they both recommended that I discontinue gluten immediately. I told them I was NOT up for a gluten challenge.  I have a recently diagnosed co-morbidity (Diabetes, Type 2) and on-going issues with anemia (3 years, haven't been able to tolerate supplements) and eczema, so my assumption is that they are more concerned with the inflamation's impact on the Diabetes than a biopsy of starting from zero. 

cyclinglady Grand Master

Hi Cycling Lady,
I was concerned about that, but when I called and spoke to the G
astroenterologist and my Primary Care Provider, they both recommended that I discontinue gluten immediately. I told them I was NOT up for a gluten challenge.  I have a recently diagnosed co-morbidity (Diabetes, Type 2) and on-going issues with anemia (3 years, haven't been able to tolerate supplements) and eczema, so my assumption is that they are more concerned with the inflamation's impact on the Diabetes than a biopsy of starting from zero. 

Okay.  This advice does go against the American GI association's diagnostic criteria but your doctors know your situation best.  A gluten challenge usually occurs after a person has been gluten free for months or years.  But, in your case, you seem to been on a gluten-containing diet, since you had positive celiac blood test results. 

   I have diabetes and I was severely anemic when I was diagnosed with celiac disease (hemoglobin a 7 and ferritin 2).  How are you managing your diabetes?  I am only controlling mine with diet at this point and staying under 6% on my HA1c (two years).    I eat only a LCHF diet (gluten free of course).  The Low Carb High Fat diet has helped my diabetes from progressing.   Eating just gluten free did nothing and in fact, made my diabetes worse!  Bread (gluten or no gluten) will cause blood glucose to soar!  :o I encourage you to eat to your meter (maybe you already are!)  I am happy to report that my anemia resolved within six months of going gluten free.  I attribute that to intestinal healing!  

maseymn Rookie

Laura,

I never had the small bowel biopsy. I was SO sick when I was diagnosed (I thought I was dying) that I went on a gluten-free diet a couple of days later (I had to have my "farewell to gluten" tour before I quit everything cold turkey). I had a blood test that was lit up with multiple antibodies to gluten. My doctor wanted me to wait until the biopsy could confirm her diagnosis, but I told her I just wasn't that curious and I wasn't willing to wait a month or more before starting the diet. If I felt better on a gluten-free diet I would never eat gluten again as long as I lived. Within 3 days I of a gluten free diet, I knew this was the reason I had felt miserable for 25+ years. Since then I've had a couple doctors want me to take a gluten challenge and do the biopsy, but I just asked them why? I'm never eating gluten again, so why bother? Even a small amount of cross contamination makes me curl up into a ball for 2 days in massive pain and horrible depression. Why would I ever want to eat gluten again, just so they "know" what I already know?  What my doctor had said at the time was that even though it wasn't the "gold standard" of testing, she was willing to accept the blood work as an indication of probable celiac, and the gluten free diet being successful as a confirmation of the diagnosis. 

I was also anemic, and had other issued relating to vitamin and mineral deficiencies that didn't change when I was using supplements. That is one of the reasons they checked me for celiac disease; the anemia that wouldn't change no matter how much iron I took. I think it probably took more than a year of a gluten-free diet for those issues to begin to resolve. Your small intestine has to heal before it can start to absorb things like iron and calcium etc. from your food or from supplements.

I was told recently by my very nice GI doctor, that I could do a gluten challenge at any time with a small bowel biopsy, but I told him what I've told everyone else who has pushed it "I'm just not that curious". It wouldn't change anything for me.

Good luck, and I hope you start to feel better.

lauramac Newbie

I'm looking forward to kicking the anemia. I was diagnosed with Diabetes on 9/4 (less than a month prior to the Celiac diagnosis) and was told that this was my chance to treat it with diet and exercise.  I began to exercise daily but was so exhausted that I couldn't make it up the stairs at night.  The nutritionist linked my exhaustion to my anemia, which caused my doctor to look at it again, which prompted the Celiac tests.  

The dual-diagnosis is a bit of a pain, as I've noticed that gluten-free foods seem to be higher in fat and sugar, which I'm trying to avoid.  I've noticed that when I eat gluten-free versions of regular foods, I bloat and have an upset tummy (something that was never an issue with gluten), so I am beginning to avoid them because of that.   

It's a long road that will require me to learn how to cook, but I appreciate the help I'm getting along the way.

lauramac Newbie

Laura,

I never had the small bowel biopsy. I was SO sick when I was diagnosed (I thought I was dying) that I went on a gluten-free diet a couple of days later (I had to have my "farewell to gluten" tour before I quit everything cold turkey). I had a blood test that was lit up with multiple antibodies to gluten. My doctor wanted me to wait until the biopsy could confirm her diagnosis, but I told her I just wasn't that curious and I wasn't willing to wait a month or more before starting the diet. If I felt better on a gluten-free diet I would never eat gluten again as long as I lived. Within 3 days I of a gluten free diet, I knew this was the reason I had felt miserable for 25+ years. Since then I've had a couple doctors want me to take a gluten challenge and do the biopsy, but I just asked them why? I'm never eating gluten again, so why bother? Even a small amount of cross contamination makes me curl up into a ball for 2 days in massive pain and horrible depression. Why would I ever want to eat gluten again, just so they "know" what I already know?  What my doctor had said at the time was that even though it wasn't the "gold standard" of testing, she was willing to accept the blood work as an indication of probable celiac, and the gluten free diet being successful as a confirmation of the diagnosis. 

I was also anemic, and had other issued relating to vitamin and mineral deficiencies that didn't change when I was using supplements. That is one of the reasons they checked me for celiac disease; the anemia that wouldn't change no matter how much iron I took. I think it probably took more than a year of a gluten-free diet for those issues to begin to resolve. Your small intestine has to heal before it can start to absorb things like iron and calcium etc. from your food or from supplements.

I was told recently by my very nice GI doctor, that I could do a gluten challenge at any time with a small bowel biopsy, but I told him what I've told everyone else who has pushed it "I'm just not that curious". It wouldn't change anything for me.

Good luck, and I hope you start to feel better.

Thank you for sharing your story!  

  • 2 weeks later...
RadDecor Newbie

Regarding Jason's Deli and their gluten-free menu; not easy for me to ever trust them again.

Prior to attending a one-day women's retreat at a local church; I paid ahead for a gluten-free meal that was to be catered by Jason's.  During lunchtime the day of the event, I retrieved a lunch box labeled "gluten-free" and sat down w/ everyone else for a nice meal and conversation.  Jason's sandwich was great, along w/ chips, a pickle and chocolate cookie.  As I bit into the cookie remember saying to my friend, "I'm assuming this cookie is gluten-free."  Discovered the hard way - never to assume.  By the time I called Jason's Deli and spoke w/ their regional manager, I was in full "gluten" mode.  Being in extreme pain and discomfort is the perfect time (in a diplomatic way of course) to explain why a restaurant should never pack "gluten" cookies in a gluten-free lunch box.  The manager was nice enough to listen to me for 30 minutes, but afterwards I didn't feel liked he appreciated the importance of the subject matter.   

We all make mistakes now and again, but it's the part about the manager being lackadaisical about Celiac Disease that prompts me to never step over the threshold of a Jason's again.  

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - marion wheaton replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    2. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    3. - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    4. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    5. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,412
    • Most Online (within 30 mins)
      7,748

    Susan Marble
    Newest Member
    Susan Marble
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.