Traveling after a celiac diagnosis

[LovintheGFlife]

I was diagnosed just over a month ago. My job required a lot of travel, both domestic and international. That was before the Covid pandemic. Thankfully, travel is much less now, but still required. Some folks suggested I change my job, but I love my work (and travel too!). How does a celiac manage when traveling for a week or so away from home? Any tips will be appreciated. Thank you!

[Helen Vajk]

Depends where you travel.  I've done well in Peru, Guatemala, Colombia - a lot of the cuisine is freshly made and mainly corn rather than wheat based.  Bring your info card, and learn to ask in Spanish - usually very helpful people.  Thailand, Bangladesh and India were also easy, and most of Europe is exceptionally well prepared, easier than in the US. China was very difficult. Basic concept, check it out in advance, bring back-up gluten-free power bars, even vacuum packed tuna or salmon.

[Scott Adams]

One of our sponsors here is GliadinX, which is an AN-PEP based enzyme that has been showing in many studies to break down small amounts of gluten in the stomach, before it reaches the intestines. I love to eat out, but noticed that around half the time I seemed to be getting some trace gluten, even if a restaurant had a gluten-free menu. One experience I recall was in the Olive Garden when I tried their gluten-free pasta, only to learn that it was cooked in the regular pasta water. So I still eat out because I enjoy doing it, but now I take a couple of these enzymes before hand (no, they are not paying me to post this).

[LovintheGFlife]

3 hours ago, Helen Vajk said:

Depends where you travel.  I've done well in Peru, Guatemala, Colombia - a lot of the cuisine is freshly made and mainly corn rather than wheat based.  Bring your info card, and learn to ask in Spanish - usually very helpful people.  Thailand, Bangladesh and India were also easy, and most of Europe is exceptionally well prepared, easier than in the US. China was very difficult. Basic concept, check it out in advance, bring back-up gluten-free power bars, even vacuum packed tuna or salmon.

Helen Vajk, thank you for the valuable travel tips; much appreciated. I knew about S. America and their preference for quinoa. I always travel with a backpack full of KIND gluten-free bars and other snacks.

[LovintheGFlife]

3 hours ago, Scott Adams said:

One of our sponsors here is GliadinX, which is an AN-PEP based enzyme that has been showing in many studies to break down small amounts of gluten in the stomach, before it reaches the intestines. I love to eat out, but noticed that around half the time I seemed to be getting some trace gluten, even if a restaurant had a gluten-free menu. One experience I recall was in the Olive Garden when I tried their gluten-free pasta, only to learn that it was cooked in the regular pasta water. So I still eat out because I enjoy doing it, but now I take a couple of these enzymes before hand (no, they are not paying me to post this).

Scott Adams, thank you for sharing this. I will ask my GE about GliadinX the next time I see him, in six weeks. Btw, is this enzyme effective in celiacs too? I was under the impression that it is only beneficial for patients with gluten sensitivity/allergy or gluten intolerance. You would know from experience, I suppose. 

[RMJ]

11 minutes ago, LovintheGFlife said:

Scott Adams, thank you for sharing this. I will ask my GE about GliadinX the next time I see him, in six weeks. Btw, is this enzyme effective in celiacs too? I was under the impression that it is only beneficial for patients with gluten sensitivity/allergy or gluten intolerance. You would know from experience, I suppose. 

Just be aware that your GE may say that GliadinX is useless.  Mine does, but I disagree.  I have a PhD in Pharmacology and have read the original research papers on it. It is intended to take care of gluten contamination, and the research shows that it can do that.  It is not meant to handle a full gluten meal.  But because it isn’t meant to handle a full gluten meal, and isn’t a “cure” for celiac disease, many say it is not useful. I think doctors worry that people with celiac disease will use it and eat lot of gluten, so they discourage using it at all.  I think people with celiac disease are smarter than that!

[trents]

7 hours ago, LovintheGFlife said:

I was diagnosed just over a month ago. My job required a lot of travel, both domestic and international. That was before the Covid pandemic. Thankfully, travel is much less now, but still required. Some folks suggested I change my job, but I love my work (and travel too!). How does a celiac manage when traveling for a week or so away from home? Any tips will be appreciated. Thank you!

With great difficulty and inconsistency. Eating out is by far the greatest threat to eating truly gluten free.

[AlwaysLearning]

A lot of it really depends on just how gluten free you intend to be. For me, being 100% gluten free means not eating out at all, unless the entire restaurant is gluten free, because I became super sensitive when I went gluten free. But most people I know who claim to be gluten free are taking minor risks on a regular basis. They are likely still suffering some damage to their digestive systems, but it does mean that they can continue to eat out even though they can't help but encounter cross contamination.

Spitballing some ideas, though I presume a combination of many solutions would be best:

• How about seeking out places to stay that include some ability to prepare and to cook your own food that you buy at a local grocery store, even if it is just a microwave to heat up a frozen gluten-free meal? Or buy yourself a backpacker's cook set in case you don't trust their kitchen's pot and pan options because scratched non-stick coatings can easily trap gluten contamination.

• If traveling by car, you could start out the first couple days with things you can make ahead of time and store in your own cooler, chilled by ice. 

• Have an emergency kit that includes some dehydrated meals that can be combined with boiling water in case you can't find any safe options.

• In general, start to learn what gluten-free foods are easy to find. Though not healthy, a bag of plain potato chips can cover a gap between meals, and most name-brand orange juice is gluten free. 

• Research in advance if there are any gluten-free bakeries in the area. They frequently have cafe's connected, making them a safe option to choose anything on the menu.

But the best advice I can give you is to not beat yourself up when you make mistakes, especially early on. Everyone does and you can expect lots of accidental glutenings in the first few months. They are all learning experiences. 

Just keep doing research and trying new gluten-free options until you find the ones that work for you. If you start to have difficulty, maybe keep a food diary to help you trace back potential gluten sources when you do make mistakes. Find ways to enjoy the process of cooking for yourself such as trying new recipes and ingredients! And try all sorts of gluten-free products until you find the ones that work for you.

And then come back and tell us all of the great ways you've found to deal with traveling gluten free!

[Ivana]

Hello,

I don't know what parts of the world you need to travel for work to, but a good option is to stay in a hotel with a buffet breakfast. Usually you can always find safe gluten free foods there, such as (boiled) eggs, cheese, fruit, plain yoghurts, etc. Other meals are more difficult, and if there are no dedicated gluten free restaurants/bakeries in town, or proven safe gluten free menus in normal restaurants (where they really know about cross contamination), then you might have to do with food/snacks that you bring from home, or find in local supermarkets (more fruit (bananas are great!), peanut butter (one can't stay hungry with that), quick gluten free poridges, canned fish, packed schar like gluten free bread with butter and jam, etc). For me, this is doable if the trip is a couple of days long, and I think even with this limited options you can eat rather healthy food. But I am someone who thinks that we tend to eat too much overall in the West, and are too obsessed with food, when it is not necessary to have such huge amounts of it (of course, this doesn't apply if you are underweight). If the trip requires eating out with colleagues, then you might have to opt out of that, or just have a drink. Best option is of course a place where you can cook yourself, but it is not a must.  I think after a few trips you will figure it out and find ways to eat safe and relatively healthy. Best wishes! 

[trents]

Carrying a supply of gluten free protein/energy bars can also help bridge the meal gap when gluten free eat out options are not available.

And let me comment on what AlwaysLearning said: "A lot of it really depends on just how gluten free you intend to be. For me, being 100% gluten free means not eating out at all, unless the entire restaurant is gluten free, because I became super sensitive when I went gluten free. But most people I know who claim to be gluten free are taking minor risks on a regular basis. They are likely still suffering some damage to their digestive systems, but it does mean that they can continue to eat out even though they can't help but encounter cross contamination."

It is normal that once you start eating gluten free you will become less tolerant of small amounts of gluten. So, unless gluten exposure is happening on a fairly regular basis you may find that over time the eateries you were using that gave you limited exposure to gluten no longer work for you and that now eating at those places will make you ill. And just because presently getting minor amounts of gluten exposure doesn't seem to make you ill isn't the same as saying it isn't causing damage to your small bowel lining so as to prevent healing. It is just that it is largely imperceptible.

[Scott Adams]

14 hours ago, LovintheGFlife said:

Scott Adams, thank you for sharing this. I will ask my GE about GliadinX the next time I see him, in six weeks. Btw, is this enzyme effective in celiacs too? I was under the impression that it is only beneficial for patients with gluten sensitivity/allergy or gluten intolerance. You would know from experience, I suppose. 

I agree with @RMJ as the enzyme is commonly available and has been used in the beer brewing industry for decades as a clarifying agent, so there is no interest by pharmaceutical companies in pursuing it as a prescription treatment for celiac disease. It has, however, been studied well for its ability to break down gluten. You can read those studies here:
https://www.gliadinx.com/publications

[LovintheGFlife]

17 hours ago, AlwaysLearning said:

A lot of it really depends on just how gluten free you intend to be. For me, being 100% gluten free means not eating out at all, unless the entire restaurant is gluten free, because I became super sensitive when I went gluten free. But most people I know who claim to be gluten free are taking minor risks on a regular basis. They are likely still suffering some damage to their digestive systems, but it does mean that they can continue to eat out even though they can't help but encounter cross contamination.

Spitballing some ideas, though I presume a combination of many solutions would be best:

• How about seeking out places to stay that include some ability to prepare and to cook your own food that you buy at a local grocery store, even if it is just a microwave to heat up a frozen gluten-free meal? Or buy yourself a backpacker's cook set in case you don't trust their kitchen's pot and pan options because scratched non-stick coatings can easily trap gluten contamination.

• If traveling by car, you could start out the first couple days with things you can make ahead of time and store in your own cooler, chilled by ice. 

• Have an emergency kit that includes some dehydrated meals that can be combined with boiling water in case you can't find any safe options.

• In general, start to learn what gluten-free foods are easy to find. Though not healthy, a bag of plain potato chips can cover a gap between meals, and most name-brand orange juice is gluten free. 

• Research in advance if there are any gluten-free bakeries in the area. They frequently have cafe's connected, making them a safe option to choose anything on the menu.

But the best advice I can give you is to not beat yourself up when you make mistakes, especially early on. Everyone does and you can expect lots of accidental glutenings in the first few months. They are all learning experiences. 

Just keep doing research and trying new gluten-free options until you find the ones that work for you. If you start to have difficulty, maybe keep a food diary to help you trace back potential gluten sources when you do make mistakes. Find ways to enjoy the process of cooking for yourself such as trying new recipes and ingredients! And try all sorts of gluten-free products until you find the ones that work for you.

And then come back and tell us all of the great ways you've found to deal with traveling gluten free!

Always Learning, this is such great, helpful and practical advice. I can't thank you enough!!

[LovintheGFlife]

16 hours ago, Ivana said:

Hello,

I don't know what parts of the world you need to travel for work to, but a good option is to stay in a hotel with a buffet breakfast. Usually you can always find safe gluten free foods there, such as (boiled) eggs, cheese, fruit, plain yoghurts, etc. Other meals are more difficult, and if there are no dedicated gluten free restaurants/bakeries in town, or proven safe gluten free menus in normal restaurants (where they really know about cross contamination), then you might have to do with food/snacks that you bring from home, or find in local supermarkets (more fruit (bananas are great!), peanut butter (one can't stay hungry with that), quick gluten free poridges, canned fish, packed schar like gluten free bread with butter and jam, etc). For me, this is doable if the trip is a couple of days long, and I think even with this limited options you can eat rather healthy food. But I am someone who thinks that we tend to eat too much overall in the West, and are too obsessed with food, when it is not necessary to have such huge amounts of it (of course, this doesn't apply if you are underweight). If the trip requires eating out with colleagues, then you might have to opt out of that, or just have a drink. Best option is of course a place where you can cook yourself, but it is not a must.  I think after a few trips you will figure it out and find ways to eat safe and relatively healthy. Best wishes! 

Ivana, thank you for the very useful tips on travel. I used to travel all over Europe, Asia and the U.S., but it's mostly domestic now (post-Covid). So, honestly I can manage with gluten-free chips and bagged popcorn. I have not traveled overseas after my diagnosis. Btw, I am underweight (no surprise!!), so I really need to maintain my calorie intake.

[LovintheGFlife]

12 hours ago, trents said:

Carrying a supply of gluten free protein/energy bars can also help bridge the meal gap when gluten free eat out options are not available.

And let me comment on what AlwaysLearning said: "A lot of it really depends on just how gluten free you intend to be. For me, being 100% gluten free means not eating out at all, unless the entire restaurant is gluten free, because I became super sensitive when I went gluten free. But most people I know who claim to be gluten free are taking minor risks on a regular basis. They are likely still suffering some damage to their digestive systems, but it does mean that they can continue to eat out even though they can't help but encounter cross contamination."

It is normal that once you start eating gluten free you will become less tolerant of small amounts of gluten. So, unless gluten exposure is happening on a fairly regular basis you may find that over time the eateries you were using that gave you limited exposure to gluten no longer work for you and that now eating at those places will make you ill. And just because presently getting minor amounts of gluten exposure doesn't seem to make you ill isn't the same as saying it isn't causing damage to your small bowel lining so as to prevent healing. It is just that it is largely imperceptible.

Trents, thank you for sharing this. I can easily relate to the following lines that you posted. "It is normal that once you start eating gluten free you will become less tolerant of small amounts of gluten. So, unless gluten exposure is happening on a fairly regular basis you may find that over time the eateries you were using that gave you limited exposure to gluten no longer work for you and that now eating at those places will make you ill. And just because presently getting minor amounts of gluten exposure doesn't seem to make you ill isn't the same as saying it isn't causing damage to your small bowel lining so as to prevent healing. It is just that it is largely imperceptible."

Thank you for the reminder!

[Scoop]

Awesome! I love travel too and am a little glad that i got my diagnosis when travel wasn't possible so that I could adjust to a gluten-free life before heading out!  My BF and I just did a 4 week trip to Miami, Bahamas, St. Thomas, St. Croix and back to Miami.  We stayed in hotels sometimes, friends homes sometimes, airbnb sometimes.  Made sure that all had fridges and microwaves at a minimum.  I bought a few ready meals to heat up.  Some peanut butter and gluten-free bagels.  Fresh fruit. One hotel had a buffet breakfast and I enjoyed peanut butter on apples and bananas and yogurt.  When I could cook, I made a few meals for a few days and put them in containers for easy heating up (bought a cheap frying pan and cutting board and some plastic storage containers - chicken breasts, gluten-free taco seasoning, packet rice, frozen veg, some corn tortillas for heating up).  Then, when everyone wanted to go to dinner, I'd grab one out of the fridge and warm it, and eat it before everyone else ate, then join everyone at the restaurant for wine and good company.  Definitely there were a few days when meals were tortilla chips and hummus.  And I carried a small cooler bag on the planes (like for 6 packs) with veggies, cut up apples, crackers, string cheese, gluten-free bagels and cream cheese, gluten-free trail mix. I certainly never felt hungry. And never felt like a burden on my travel partner or friends.  I tried a few meals out but just got my DH and brain fog back - so I really do avoid when I can. Enjoy the freedom!! 

Just now, Scoop said:

and also bought a box of zipper bags to portion out snacks for the restaurants - just like some gluten-free pretzels - not one restaurant was bothered that I nibbled while everyone else ate.  

 

[LovintheGFlife]

6 hours ago, Scoop said:

Awesome! I love travel too and am a little glad that i got my diagnosis when travel wasn't possible so that I could adjust to a gluten-free life before heading out!  My BF and I just did a 4 week trip to Miami, Bahamas, St. Thomas, St. Croix and back to Miami.  We stayed in hotels sometimes, friends homes sometimes, airbnb sometimes.  Made sure that all had fridges and microwaves at a minimum.  I bought a few ready meals to heat up.  Some peanut butter and gluten-free bagels.  Fresh fruit. One hotel had a buffet breakfast and I enjoyed peanut butter on apples and bananas and yogurt.  When I could cook, I made a few meals for a few days and put them in containers for easy heating up (bought a cheap frying pan and cutting board and some plastic storage containers - chicken breasts, gluten-free taco seasoning, packet rice, frozen veg, some corn tortillas for heating up).  Then, when everyone wanted to go to dinner, I'd grab one out of the fridge and warm it, and eat it before everyone else ate, then join everyone at the restaurant for wine and good company.  Definitely there were a few days when meals were tortilla chips and hummus.  And I carried a small cooler bag on the planes (like for 6 packs) with veggies, cut up apples, crackers, string cheese, gluten-free bagels and cream cheese, gluten-free trail mix. I certainly never felt hungry. And never felt like a burden on my travel partner or friends.  I tried a few meals out but just got my DH and brain fog back - so I really do avoid when I can. Enjoy the freedom!! 

 

Scoop, sounds like quite the adventure! I think as long as peanut butter is on the menu, one will never go hungry. Btw, have you ever tried Gliadin X when eating out? Just curious.

[Scoop]

6 hours ago, LovintheGFlife said:

Scoop, sounds like quite the adventure! I think as long as peanut butter is on the menu, one will never go hungry. Btw, have you ever tried Gliadin X when eating out? Just curious.

I sure have. It’s a hard thing to confirm the positive effects.   I take 8 tablets or less at a restaurant. I keep them in a baggie in my purse and decide if I should take any or all once I get to the restaurant that I think is safe and place the order and watch the staff. I just don’t know.  It always feels like Russian roulette unless I’m at a strictly gluten free place or I’m cooking for myself.  Do I think the Gliadin X helps? I’ve bought 5 bottles, I keep it on me at all times, and I’ve given one bottle to my recently diagnosed adult daughter.  I still feel glutened nearly every time I eat out but less when I hound the staff to keep me safe, and take 8 tablets.  I’ll keep on with the Gliadin X.  Probably helps as far as I’m concerned.  Or, the restaurant really did a good job (less likely).  Wish it was easier for sure. 

[Scoop]

But to be clear.  I never eat at a restaurant unless they say they can accommodate me.  And then, I pretty much never believe them and then I take up to 8 tablets if I’m sure they’re going to gluten me.  I am pretty bad at advocating for myself and it’s on my next new year’s resolution.  I just eat before hand and then take a few snacks in my purse -tonight it was gluten-free Pretzels and some small salami slices.  No big deal  And I cook better than a lot of non-Michelin star restaurants anyway.  🙂 

[LovintheGFlife]

On 9/2/2021 at 1:59 AM, Scoop said:

I sure have. It’s a hard thing to confirm the positive effects.   I take 8 tablets or less at a restaurant. I keep them in a baggie in my purse and decide if I should take any or all once I get to the restaurant that I think is safe and place the order and watch the staff. I just don’t know.  It always feels like Russian roulette unless I’m at a strictly gluten free place or I’m cooking for myself.  Do I think the Gliadin X helps? I’ve bought 5 bottles, I keep it on me at all times, and I’ve given one bottle to my recently diagnosed adult daughter.  I still feel glutened nearly every time I eat out but less when I hound the staff to keep me safe, and take 8 tablets.  I’ll keep on with the Gliadin X.  Probably helps as far as I’m concerned.  Or, the restaurant really did a good job (less likely).  Wish it was easier for sure. 

@Scoopthank you for responding. Think I will give Gliadin X a try after my next visit with the GE. Enjoy your travels and I sure hope you don't get glutened as much!

[LovintheGFlife]

On 9/2/2021 at 2:03 AM, Scoop said:

But to be clear.  I never eat at a restaurant unless they say they can accommodate me.  And then, I pretty much never believe them and then I take up to 8 tablets if I’m sure they’re going to gluten me.  I am pretty bad at advocating for myself and it’s on my next new year’s resolution.  I just eat before hand and then take a few snacks in my purse -tonight it was gluten-free Pretzels and some small salami slices.  No big deal  And I cook better than a lot of non-Michelin star restaurants anyway.  🙂 

@Scoop, same here. If eating out, I make sure the restaurant has at least a few gluten-free items on menu. Furthermore, I talk to the staff in advance and make sure they understand what "celiac disease" or "gluten intolerance" is. Thanks for sharing!

[Helen Vajk]

Just hosted our 50th anniversary cruise with Hornblower on San Francisco Bay. Salad (no rolls) and both entrees, chicken & veg, were completely gluten-free.  They couldn't do a gluten-free dessert (NY cheesecake) but I brought 6 gluten-free cupcakes from a local completely gluten-free cafe.   The food service expressed concern about cross-contamination, not likely from cheesecake, and answered all my questions.  All 6 celiacs (yes, 4 related to me) did fine.  Tipped them well.   Same message - pre-meal contact is worth the effort.  

[Scott Adams]

It's always nice to hear a positive story like this...thank you for sharing it!

[LovintheGFlife]

4 hours ago, Helen Vajk said:

Just hosted our 50th anniversary cruise with Hornblower on San Francisco Bay. Salad (no rolls) and both entrees, chicken & veg, were completely gluten-free.  They couldn't do a gluten-free dessert (NY cheesecake) but I brought 6 gluten-free cupcakes from a local completely gluten-free cafe.   The food service expressed concern about cross-contamination, not likely from cheesecake, and answered all my questions.  All 6 celiacs (yes, 4 related to me) did fine.  Tipped them well.   Same message - pre-meal contact is worth the effort.  

@Helen Vajk, interesting you mentioned San Francisco. I was vacationing there earlier this month and discovered an awesome bakery located inside the Ferry Building, called "Mariposa". The items on sale were so delightful. I tried the bagels, scones and muffins. All were amazing, although a little high-priced. But for a gluten-free visitor with a terrible sweet tooth, they were irresistible. 😋

[Helen Vajk]

30 minutes ago, LovintheGFlife said:

@Helen Vajk, interesting you mentioned San Francisco. I was vacationing there earlier this month and discovered an awesome bakery located inside the Ferry Building, called "Mariposa". The items on sale were so delightful. I tried the bagels, scones and muffins. All were amazing, although a little high-priced. But for a gluten-free visitor with a terrible sweet tooth, they were irresistible. 😋

The main Mariposa bakery in Oakland is basically the Shrine of gluten-free baking.  Salmon sandwich on a fresh crispy baguette. . . but we live beyond the tunnel, so closer for us is Life is Sweet in Danville, also awesome. 

[fllstuart77]

do you really trust those gluten free bakeries.. ?

I ate at one down here and always got  diarrhea after...

They have a nice one in Naples Florida called Epiphany Gluten Free Baker....

I was actually thinking of moving there before just to be minutes away from a dedicated gluten free place...    plus the town and its location is beautiful paradise..