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

Anxieties When Travelling As A Celiac


Gluten Free Traveller

Recommended Posts

Gluten Free Traveller Newbie

Travelling can be challenging when you're celiac. A vacation or a business trip isn't as simple as it was before.

Personally what I find most difficult is trying to communicate with a chef/server in a different language...if we barely know what each other is saying then it's quite the challenge trying to work out whether or not they understand what celiac disease is and what I mean by cross contamination.

What concerns you most/makes you most anxious about travelling gluten free / as a celiac?


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



Celiac.com Sponsor (A8-M):



anabananakins Explorer

Mine is getting glutened on a flight. On a long haul flight you usually get a meal about an hour after take off, and another about 2 hours before landing. If I get glutened I know almost exactly 2 hours later when I have to run to the bathroom. So the first doesn't worry me too much, since I have the rest of the flight to be sick (I'm never stuck in the bathroom for too long, I'm lucky that with a one off glutening my reactions are short and sharp!). But the one before landing - eek. The timing means that I'd possibly be running to the bathroom at a time when I'm not allowed to get up from my seat. I don't know how the flight attendants would react, and it would all round be an embarrassing nightmare. I always end up taking preventative immodium (and I don't even know if it works like that but it makes me feel better and doesn't seem to do any harm).

I've not had any problems with the airline gluten free meals, they have been completely fine (V Australia and Air NZ - I've done gluten free long haul flights 6 times now). It's my seat mates accidentally getting me with their crumbs that I'm more worried about. So I'm always super paranoid about hand washing and I'm even more hyper vigilant about touching my mouth. On the plus side, I always get my special meal way ahead of the regular meals being served, which really cuts down on the likelihood of cc.

love2travel Mentor

Travelling can be challenging when you're celiac. A vacation or a business trip isn't as simple as it was before.

Personally what I find most difficult is trying to communicate with a chef/server in a different language...if we barely know what each other is saying then it's quite the challenge trying to work out whether or not they understand what celiac disease is and what I mean by cross contamination.

What concerns you most/makes you most anxious about travelling gluten free / as a celiac?

When I travel to other countries I always use little laminated restaurant cards to ensure we understand one another. :)

love2travel Mentor

My biggest concerns are the long flights/layovers/delays. Once I am at my destination I'm fine - it's just getting there that bothers me!

ElseB Contributor

Getting stuck on a plane without food because you're trapped. On one occasion, they gave away my gluten free meal to someone else, but I had lots of food with me so I was okay. But on a previous flight, due to delays, problems with the plane, etc., I was stuck on a plane for 16 hours. The flight was only 8 hours. Luckily, I had some food with me but was already starting to ration it because I had no idea when I was going to be able to get off the plane!

GlutenFreeManna Rising Star

My biggest fear is having security take away my safe food (yes I know they are SUPPOSED to let non-liquids through but my husband has had Lays Stax taken away at security before and it really concerns me). Second biggest fear is getting stuck overnight in an airport somewhere and running out of the food I brought and not being able to find safe food. I have to eat every 2-3 hours because of hypoglycemia. I mostly control it with lower carb options but that's harder to do when traveling.

ElseB Contributor

My biggest fear is having security take away my safe food (yes I know they are SUPPOSED to let non-liquids through but my husband has had Lays Stax taken away at security before and it really concerns me). Second biggest fear is getting stuck overnight in an airport somewhere and running out of the food I brought and not being able to find safe food. I have to eat every 2-3 hours because of hypoglycemia. I mostly control it with lower carb options but that's harder to do when traveling.

I actually did have food confiscated once. I arrived in Australia with trail mix and hadn't realized that the nuts were raw and not roasted. Roasted nuts are okay, raw are not (I guess because they can carry disease).


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



Celiac.com Sponsor (A8-M):



anabananakins Explorer

I actually did have food confiscated once. I arrived in Australia with trail mix and hadn't realized that the nuts were raw and not roasted. Roasted nuts are okay, raw are not (I guess because they can carry disease).

Yeah, raw foods (or any meat, dairy etc) are definite no nos to australia and New Zealand. Along with a bunch of other products too. Declare everything! That arrivals card is taken very seriously and you don't get into trouble if you ask questions and are open about what you have, but there are big fines otherwise. Being island nations we can keep a really strict control on things like this. We're used to it - we've been trained well to take it very seriously and we know what to declare - but I hear non - aussies complain all the time about losing stuff to the quarantine officers (my friend lost a bag of almonds. I warned her, but I'm sure she thought I was being over the top and it would be like LAX where they get you to declare stuff and then don't ask any questions about what you declared. They x-ray parcels too - I've also not received gifts sent in the post because they've been confiscated by quarantine.It's sad opening a present to find a letter from quarantine instead of the actual gift!)

But on the plus side, at least you're losing it before you enter Australia where you'll be able to get safe foods again. It would be really bad losing something at security before a flight.

Gluten Free Traveller Newbie

Interesting. Thanks for the feedback guys. I'm always fascinated to hear the thoughts of fellow gluten free travellers. :)

So it sounds as though the actual process of getting to your location brings a lot of anxiety. Do these anxieties stop you from travelling?

How about once you make it to your destination? What anxieties/concerns do you have once you arrive in New York, Paris or Rio for example?

Gluten Free Traveller Newbie

Yeah, raw foods (or any meat, dairy etc) are definite no nos to australia and New Zealand. Along with a bunch of other products too. Declare everything! That arrivals card is taken very seriously and you don't get into trouble if you ask questions and are open about what you have, but there are big fines otherwise. Being island nations we can keep a really strict control on things like this.

Interesting..I didn't realise Oz and New Zealand were tough on brining produce in. Chile is very much like that too! They have huge signs when you go through customs of fruit with big crosses through it! :)

love2travel Mentor

Interesting. Thanks for the feedback guys. I'm always fascinated to hear the thoughts of fellow gluten free travellers. :)

So it sounds as though the actual process of getting to your location brings a lot of anxiety. Do these anxieties stop you from travelling?

How about once you make it to your destination? What anxieties/concerns do you have once you arrive in New York, Paris or Rio for example?

The anxiety does not stop me from traveling - we own a lovely house in Croatia and Croatia is where my heart is. However, as I posted on another thread, we had to postpone our trip (we were to be leaving this past weekend) due to my being ill and in a lot of pain. Severe chronic pain and travel causes me far more anxiety than celiac does because I cannot escape it. Once I arrive I am fine as I do a lot of research for each country we go to well in advance. I am a planner! :)

ElseB Contributor

Yeah, raw foods (or any meat, dairy etc) are definite no nos to australia and New Zealand. Along with a bunch of other products too. Declare everything! That arrivals card is taken very seriously and you don't get into trouble if you ask questions and are open about what you have, but there are big fines otherwise. Being island nations we can keep a really strict control on things like this. We're used to it - we've been trained well to take it very seriously and we know what to declare - but I hear non - aussies complain all the time about losing stuff to the quarantine officers (my friend lost a bag of almonds. I warned her, but I'm sure she thought I was being over the top and it would be like LAX where they get you to declare stuff and then don't ask any questions about what you declared. They x-ray parcels too - I've also not received gifts sent in the post because they've been confiscated by quarantine.It's sad opening a present to find a letter from quarantine instead of the actual gift!)

But on the plus side, at least you're losing it before you enter Australia where you'll be able to get safe foods again. It would be really bad losing something at security before a flight.

I actually was going to declare it, and had written it on the arrival card, but a cute little dog sniffed me out before I even made it to the quarantine officers!

anabananakins Explorer

I actually was going to declare it, and had written it on the arrival card, but a cute little dog sniffed me out before I even made it to the quarantine officers!

Oh dear! But hee, they are so cute. When I fly to Tasmania there's an extra degree of protection - we can't even bring in produce from mainland Australia. One time years ago the sniffer dog got a lady who'd saved the pudding from the plane (with kiwi fruit on the top). It was hilarious. She'd obviously not paid any attention to any of the signs and announcements and she was wailing "I don't have drugs, I don't have drugs!". The quarantine officer was all "madam, we are concerned about the fruit!"

Going back to the question - I don't stress much when I arrive. I'm a thorough researcher. But it is tricky if don't have something to tide me over when I first arrive. You have to have a plan. Especially in Los Angeles, which, without a car, requires much planning in advance. My last trip I flew to LA, took the Fly Away to Union Station and got a train to San Diego. That was all fine but I had to do it on snacks I already had with me. But once in San Diego I was fine as my hotel had a fridge and there's a big supermarket down town in walking distance.

I like to work out which supermarkets and Chipotles are easily accessed by public transport. In LA there's a Chipotle very close to the 7th and Metro stop downtown, it's very handy. The Chicago loop area has heaps. Washington DC Union Station even has one right at the station! I do a lot of my US travel by myself (in between visiting friends) so it's my absolute fave place to eat.

Gluten Free Traveller Newbie

The anxiety does not stop me from traveling - we own a lovely house in Croatia and Croatia is where my heart is. However, as I posted on another thread, we had to postpone our trip (we were to be leaving this past weekend) due to my being ill and in a lot of pain. Severe chronic pain and travel causes me far more anxiety than celiac does because I cannot escape it. Once I arrive I am fine as I do a lot of research for each country we go to well in advance. I am a planner! :)

That's great to hear it doesn't stop you from travelling. I know it certainly does for some celiacs which is why I started my website when I was diagnosed to encourage people that it can be done. :)

oooh, Croatia is so beautiful. Where abouts in the country is your house? Sorry to hear that your chronic pain isn't allowing you to get there at this time. :( My husband and I spent 10 days driving around Slovenia and Croatia a few years back. A beautiful part of the world and definitely somewhere I want to go back to. What's it like finding gluten free food in Croatia?? I was there in pre-celiac days.

love2travel Mentor

That's great to hear it doesn't stop you from travelling. I know it certainly does for some celiacs which is why I started my website when I was diagnosed to encourage people that it can be done. :)

oooh, Croatia is so beautiful. Where abouts in the country is your house? Sorry to hear that your chronic pain isn't allowing you to get there at this time. :( My husband and I spent 10 days driving around Slovenia and Croatia a few years back. A beautiful part of the world and definitely somewhere I want to go back to. What's it like finding gluten free food in Croatia?? I was there in pre-celiac days.

You are right - it CAN be done! I absolutely refuse to allow it to prevent me from doing what I love most. Good for you for starting the website.

Croatia is stunning, isn't it? Our house is in Istria, a 2.5 hour drive or boat ride from Venice. Our house is 200 years old, traditional stone, surrounded by forest and vineyards and olive groves, as well as being only a short drive from the sea. It is so incredible and seems so surreal. We are in love with the culture, history, climate, language and so on (am learning Croatian).

Gluten-free food can be tricky to find there if you are looking for snacks. So, I stick with whole fresh foods normally. But I do take snacks along from Canada for airports and such. But gluten-free foods are possible to find in pharmacies and some larger grocery stores. We also pick up yummy things from Italy on our way. As far as eating out goes, it is easier there than where we live in Canada as people seem so knowledgable about it (not everyone but the higher-end places do). We always take along detailed restaurant cards in Italian, Slovenian, Croatian...and upon reading them the servers and/or chefs nod understandingly. Often we buy fresh seafood and veg to grill in our outdoor wood-fired oven (and pick wild herbs, our own figs, nuts around the house) for meals, too. We know people who literally live off the land (and sea) there. They forage for mushrooms and such, too. And we are in the middle of the famous white truffles!!!!

Where did you spend time in Croatia and Slovenia?

Gluten Free Traveller Newbie

Yes, it's beautiful and the people are very friendly. In Slovenia we travelled to Ljubljana (which is one of my favourite cities in Europe),Bled, Postojna and some short stops in between. In Croatia, we drove down the coast and stayed in Zadar and a couple of other places along the coast. Beautiful.

GFinVenice Rookie

My biggest fear is having security take away my safe food (yes I know they are SUPPOSED to let non-liquids through but my husband has had Lays Stax taken away at security before and it really concerns me). Second biggest fear is getting stuck overnight in an airport somewhere and running out of the food I brought and not being able to find safe food. I have to eat every 2-3 hours because of hypoglycemia. I mostly control it with lower carb options but that's harder to do when traveling.

ciao, I am italia and the fear of security is mine too. Once I was in Cancun airport I had some salame slices snacks to have with crakers.....they took it even thought I was trying to explain them it was for my daughter.....but they did not know the word gluten in qny language.......

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. - Jordan Carlson posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Fruits & Veggies

    2. - wellthatsfun posted a topic in Gluten-Free Recipes & Cooking Tips
      0

      heaps of hope!

    3. - knitty kitty replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      6

      Help understand results

    4. - knitty kitty replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      10

      Insomnia help

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,994
    • Most Online (within 30 mins)
      7,748

    KimberlyS
    Newest Member
    KimberlyS
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Jordan Carlson
      Hello everyone! Been a while since I posted. The past few moths have been the best by for recovery for myself. I have been the least bloated I have ever been, my constant throat clearing is almost gone, I have stopped almost all medication I was prevously taking (was taking vyvanse for adhd, pristiq for anxiety,fomotadine/blexten for histamine blockers and singulair). Only thing I take now is Tecta. I also no longer get any rashes after eating. Things are going very well. Most success came actually once I upped my B12 daily dose to 5,000 mcg. I do have one thing I am un able to figure out and want to see if anyone else has this issue or has experience working around it. Ever since I was born I have always had a issue getting fruits and veggies down. No matter how hard I tried, it would always result in gagging or throwing up. Always just thought I was a picky eater. Now that my stomach and system has healed enough that I can feel when something is off almost istantly, I notice that after eating most fruits (sometimes I am ok with bananas) and veggies, my stomach instantly starts burning and my heart starts to pound and I get really anxious as if my body doesnt know what to do with what just enetered it. So I am thinking now that this is what probably was going on when I was born and my body started rejecting it before which caused this weird sensory issue with it causing the gagging. Hoping someone has some exprience with this as well because I would love to be able to enjoy a nice fruit smoothie once in a while haha. Thanks everyone!
    • wellthatsfun
      i know i've been rather cynical and sad about being fully diagnosed in june 2025, but my boyfriend has been consistently showing me the wonderful world that is gluten free cooking and baking. in the past couple of days he's made me a gluten free rice paper-wrapped spanakopita "pastry", plus a wonderful mac and cheese bechamel-ish sauce with gluten free pasta (san remo brand if you're in australia/if you can get your hands on it wherever you are).  those meals are notably gluten free, but mainly he's been making me easy gluten free meals - chili mince with white rice and sour cream, chicken soup with homemade stock from the chicken remains, and roast chickens with rice flour gravy and roast veggies. i'm a bit too thankful and grateful lol. how lucky could i possibly be? and, of course, for those who don't have someone to cook for them, it's quite easy to learn to cook for yourself. i've been making a lot of meals for us too. honestly, cooking is pretty darn fun! knowing basic knife skills and sanitary practices are all you really need. experimenting with spices will help you get on track to creating some really flavourful and yummy dishes. coeliac is a pain, but you can use it to your advantage. healthier eating and having fun in the kitchen are major upsides. much luck to all of you! let's be healthy!
    • knitty kitty
      That test is saying that your daughter is not making normal amounts of any IGA antibodies.  She's not making normal amounts of antibodies against gliadin, not against bacteria, not against viruses.  She is deficient in total IGA, so the test for antigliadin antibodies is not valid.  The test was a failure.  The test only works if all different kinds of antibodies were being made.  Your daughter is not making all different kinds of antibodies, so the test results are moot.  Your daughter should have the DGP IgG and TTG IgG tests done.   The tests should be performed while she is still consuming gluten.  Stopping and restarting a gluten containing diet can make her more sick, just like you refuse to eat gluten for testing.  Call the doctor's office, request both the IGG tests. Request to be put on the cancellation list for an appointment sooner.  Ask for genetic testing.   Celiac disease is passed on from parents to children.  You and all seven children should be tested for genes for Celiac disease.  Your parents, your siblings and their children should be tested as well.  Eating gluten is not required for genetic testing because your genes don't change.  Genetic testing is not a diagnosis of Celiac disease.  Just having the genes means there is the potential of developing Celiac disease if the Celiac genes are activated.  Genetic testing helps us decide if the Celiac genes are activated when coupled with physical symptoms, antibody testing, and biopsy examination. It's frustrating when doctors get it wrong and we suffer for it.  Hang in there.  You're a good mom for pursuing this!  
    • knitty kitty
      @hjayne19, So glad you found the information helpful.  I know how difficult my struggle with anxiety has been.  I've been finding things that helped me and sharing that with others makes my journey worthwhile. I like Life Extension Bioactive Complete B Complex.  It contains the easily activated forms of B vitamins needed by people with the MTHFR genetic variation often found with Celiac disease.   Avoid B Complex vitamins if they contain Thiamine Mononitrate if possible.  (Read the ingredients listing.)  Thiamine Mononitrate is the "shelf-stable" form of B 1 that the body can't utilize.  B vitamins breakdown when exposed to heat and light, and over time.  So "shelf-stable" forms won't breakdown sitting on a shelf in a bright store waiting to be bought.  (It's also very cheap.)  Thiamine Mononitrate is so shelf-stable that the body only absorbs about thirty percent of it, and less than that is utilized.  It takes thiamine already in the body to turn Thiamine Mononitrate into an active form.   I take MegaBenfotiamine by Life Extension.  Benfotiamine has been shown to promote intestinal healing, neuropathy, brain function, glycemic control, and athletic performance.   I take TTFD-B1 Max by Maxlife Naturals, Ecological Formulas Allthiamine (TTFD), or Thiamax by EO Nutrition.  Thiamine Tetrahydrofurfuryl Disulfide (TTFD for short) gets into the brain and makes a huge difference with the anxiety and getting the brain off the hamster wheel.  Especially when taken with Magnesium Threonate.   Any form of Thiamine needs Magnesium to make life sustaining enzymes and energy.  I like NeuroMag by Life Extension.  It contains Magnesium Threonate, a form of magnesium that easily crosses the blood brain barrier.  My brain felt like it gave a huge sigh of relief and relaxed when I started taking this and still makes a difference daily.   Other brands of supplements i like are Now Foods, Amazing Formulas, Doctor's Best, Nature's Way, Best Naturals, Thorne, EO Nutrition. Naturewise.  But I do read the ingredients labels all the time just to be sure they are gluten and dairy free. Glad to help with further questions.  
    • trents
      Welcome to the celiac.com community @pothosqueen!   Can you be more specific about which IGA test was run that resulted in 114 score and said to be "normal" and could you please include the reference range for what would be normal? By the size of that number it looks like it may have been what we call "total IGA" but that test is not usually run without also running a TTG-IGA. Total IGA tests for IGA deficiency. If someone is IGA deficient, then the celiac-specific IGA tests like the TTG-IGA will be inaccurate. Was this the only IGA test that was run? To answer, your question, yes, a positive biopsy is normally definitive for celiac disease but there are some other medical conditions, some medications and even some food proteins in rare cases that can cause positive biopsies. But it is pretty unlikely that it is due to anything other than celiac disease.
×
×
  • 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.