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      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.

First Out-Of-Town Trip Since Diagnosis. Big Girl Pants.
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47 posts in this topic

Day one into my first on the road, hotels every day trip since the celiac diagnosis. I never realized how hard this would be! Camping was a breeze, and while a visit to the family was annoying (they all ordered pizza!) it was do-able. Strange restaurants every day? Not so fun.

 

Last night had a place tell me they could totally do gluten free, but then insist glutinous rice has gluten. They sent a salad w/ crunchy things on it after I asked for them to be left off and tried to convince me they were rice. Then, my entree did not come with all the others, it came only with a "oh sorry, I forgot to tell the chef it needed to be gluten free, and he said he can't do that because the meat is marinated in soy ahead of time. So I ate nothing but the salad. Today, the one restaurant that came up on Find Me gluten-free app was closed for a private event. So I ate two boiled eggs in my hotel room.

 

My breakfast, rice and eggs, was inedible because I didn't consider that I'm at altitude and the rice cooker wouldn't work for shit. The rice wasn't even remotely done.

 

So on with the big girl pants. Don't cry. Do not cry. Try not to cry. Have a Kind bar. Don't cry.

 

Sigh.

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Rice cookers don't work at high elevation? I did not know that ( said the girl that lives at 100 ft above sea level if I'm at the top of a hill). Bummer.

Think of it as a learning experience? I have gotten much better at traveling with a little practice. You will see what works for you and what doesn't and make improvements next time.

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Hang in there!

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Well...I say cry, then adjust ;)

At least that's what I did ... Big girl pants intact.

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I start my busy work season here soon and will be in hotels pretty much every night Sept-November.  I'm planning on staying in places that have a kitchen and I got a plug in cooler for the car and will just cook for myself on the road.  I can't afford to be sick since I meetings with clients every day that can't be rescheduled.  It's going to be interesting.    Stop by home Depot and get one of these  http://www.homedepot.com/p/Koolatron-14-qt-12-Volt-Travel-Cooler-D13A-Soft-Sided-Travel-Cooler/205070296?N=5yc1vZc7nwZ29p  .  If nothing else you can get some frozen dinners that are gluten-free and warm them in the microwave at the hotel.

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I bought one of those purse type thermal bags and stock it with stuff like cheese pieces, crackers, nuts, Think Thin bars, tuna, peanut butter squeeze packs.  Quick protein get-me-through-another-meal type stuff. 

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I use travel coolers too, though I have a coleman 40 qt.  For shorter trips I use a regular cooler with a frozen gallon jug of water.  I also have a portable microwave.  You'll do fine once you learn the ropes.

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I'm debating about buying a toaster so I can at least have toast in the room for breakfast.  

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I had to be on the road for several weeks recently. Amy's frozen dinners were a godsend! They have quite a variety of gluten free meals (not all are gluten free - you have to check the box), and they are carried by WalMart, Target, etc. They cost around $3.50 each.

 

Now when I'm in a strange town and need a definitely gluten-free meal, I just find a WalMart, buy one, and use my hotel microwave. And they're pretty tasty, too!

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Thanks for the tip on the altitude cooking, Beth. It came a little too late for my not-done pot of Bob's Red Mill cereal. I'm going to stick w/ the Chex, even though I can't find lactose-free milk anywhere. Take your pick - grumbling stomach from hunger or from the lactose intolerance I guess.

 

Today I lost the big girl pants and my shit, because one of the restaurants given high marks on the Find me gluten-free app turned out to be total bullshit and not celiac friendly at all. It's just for people who like to eat pizza and pretend it's gluten free when they bake it in all the flour from all the other pizzas. (sigh). Even the salads weren't safe there.

 

Dinner was a Reese's peanut butter cup and some gluten-free cookies because all of my cold food melted down in the car because I had to spend 10 hours working before getting to the next hotel. My stick of butter that I had for my eggs and rice melted all over everything and the cooler. It was a hot mess. Literally.

 

Oh and add to it I think I got contaminated having soup and a salad at the hotel last night because after months of being fine, I spent three hours on the toilet before giving in and taking steroids. The server assured me up and down it was totally fine.

 

I'm officially throwing in the towel on travel. I love going places but this is absolute bullshit that I have to carry a fucking kitchen and refrigerator with me just so I can eat. I'm really over it. There's no place like home. There's no place like home. There's no place like home....

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If I had a pair of ruby slippers I would let you borrow them....until then all I can offer is it will get easier with time.

Hang tough and enjoy your cozy bed once you get home :)

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Thanks for the tip on the altitude cooking, Beth. It came a little too late for my not-done pot of Bob's Red Mill cereal. I'm going to stick w/ the Chex, even though I can't find lactose-free milk anywhere. Take your pick - grumbling stomach from hunger or from the lactose intolerance I guess.

 

Today I lost the big girl pants and my shit, because one of the restaurants given high marks on the Find me gluten-free app turned out to be total bullshit and not celiac friendly at all. It's just for people who like to eat pizza and pretend it's gluten free when they bake it in all the flour from all the other pizzas. (sigh). Even the salads weren't safe there.

 

Dinner was a Reese's peanut butter cup and some gluten-free cookies because all of my cold food melted down in the car because I had to spend 10 hours working before getting to the next hotel. My stick of butter that I had for my eggs and rice melted all over everything and the cooler. It was a hot mess. Literally.

 

Oh and add to it I think I got contaminated having soup and a salad at the hotel last night because after months of being fine, I spent three hours on the toilet before giving in and taking steroids. The server assured me up and down it was totally fine.

 

I'm officially throwing in the towel on travel. I love going places but this is absolute bullshit that I have to carry a fucking kitchen and refrigerator with me just so I can eat. I'm really over it. There's no place like home. There's no place like home. There's no place like home....

 

I have the find me gluten-free app too, it's pretty worthless.  Heck, when I went to a restaurant that I KNEW was gluten-free, owner is Celiac,  it didn't even show up on there....

 

I've found that you have to start asking questions about prep and make sure they know you have a "gluten allergy"...Celiac means nothing to a lot of people but when you say "allergy" they perk up.  

 

If you have to travel a lot, my suggestion would be to buy food items in each area so you don't have to leave them in your car.  The night before you leave for a new location, search for restaurants near the address you will be at on google and find some that are safe.

 

I also just saw these  http://www.wildgardenhummus.com/ at a work thing the other day.  They have individual packs that are shelf stable so no refrigeration needed.  You can eat hummus a variety of ways and it's packed with protein.  

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With those travel coolers, you can get an adapter to plug it in a normal recepticle.  You can carry it into your place of work or hotel room and plug it in.  It will get better with experience.  It's just a matter of figuring out how to make it work.

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When I am living out of my car (hotels) vs RV, I use my five day cooler. Yeah, it is big but it works. I drag it into the most elegant of hotels. I use big blocks of ice made from leftover milk jugs. That can keep thiings cool even in a hot car. Then I refill with tons of hotel ice. All food is kept in zip lock bags or plastic containers.

In Europe this past summer, we did not have a microwave or frig at our hotel. Instead we stopped for each meal at the grocery store, literally. Lived on pre-packaged lunch meat, fruit and veggies, chips and cookies.

It does get better, but with practice.

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I have the find me gluten-free app too, it's pretty worthless.  Heck, when I went to a restaurant that I KNEW was gluten-free, owner is Celiac,  it didn't even show up on there....

 

I've found that you have to start asking questions about prep and make sure they know you have a "gluten allergy"...Celiac means nothing to a lot of people but when you say "allergy" they perk up.  

 

If you have to travel a lot, my suggestion would be to buy food items in each area so you don't have to leave them in your car.  The night before you leave for a new location, search for restaurants near the address you will be at on google and find some that are safe.

 

I also just saw these  http://www.wildgardenhummus.com/ at a work thing the other day.  They have individual packs that are shelf stable so no refrigeration needed.  You can eat hummus a variety of ways and it's packed with protein.  

 

I'll definitely keep that in mind if I ever get to the point where I can eat legumes again.

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I've used find me gluten free while road tripping several times...found the most celiac and other intolerance friendly restaurant in Carmel that we never would have found on our own.

Irish says it often...look for the reviews by those with celiac disease...and always have a snack handy in case the reviews are wrong or the restaurant's practices or staff change .

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Thanks for the tip on the altitude cooking, Beth. It came a little too late for my not-done pot of Bob's Red Mill cereal. I'm going to stick w/ the Chex, even though I can't find lactose-free milk anywhere. Take your pick - grumbling stomach from hunger or from the lactose intolerance I guess.

 

Today I lost the big girl pants and my shit, because one of the restaurants given high marks on the Find me gluten-free app turned out to be total bullshit and not celiac friendly at all. It's just for people who like to eat pizza and pretend it's gluten free when they bake it in all the flour from all the other pizzas. (sigh). Even the salads weren't safe there.

 

Dinner was a Reese's peanut butter cup and some gluten-free cookies because all of my cold food melted down in the car because I had to spend 10 hours working before getting to the next hotel. My stick of butter that I had for my eggs and rice melted all over everything and the cooler. It was a hot mess. Literally.

 

Oh and add to it I think I got contaminated having soup and a salad at the hotel last night because after months of being fine, I spent three hours on the toilet before giving in and taking steroids. The server assured me up and down it was totally fine.

 

I'm officially throwing in the towel on travel. I love going places but this is absolute bullshit that I have to carry a fucking kitchen and refrigerator with me just so I can eat. I'm really over it. There's no place like home. There's no place like home. There's no place like home....

I always shake my head in wonder why other people have so much trouble traveling and eating as a celiac when sensitve as all hell me can do so with little trouble.  I am talking international travel here but to be honest, Europe is much more celiac savvy than the US is, although it is getting much better here with each passing year.

 

The Find Me Gluten Free website is hardly useless and I would urge other people not to give up so easily and trash good websites that many others use and find helpful. 

I have never failed to eat safely when ordering the safest possible meal.......protein, salad or veg and a starch, all basically prepared for those times when you are worried it might not work out.  I usually always eat brekkies in the flat I rent because finding gluten-free brekkies is harder than dinner.  French places in Europe do a good breakfast and I have never been glutened in one of those.....they get the gluten issue because they are about the most food smart people on the planet.  Eggs, smoked salmon, tomatoes, mushrooms....all easily prepared gluten free without cc.

 

The only people who might find it impossible are those with multiple food allergies.  That is a no brainer.  But, honestly....where the hell are you people going that you seem to think everyone else on the planet is stupid and can't get anything right? Maybe all this anxiety and anger about having to work harder when traveling gluten free may be causing some of your symptoms? You got cc'd eating soup and salad at a hotel...healthy food......but you are OK eating Reese's PB cups and cookies for dinner?  If I ate that junk for dinner, I'd be sick.

 

For anyone new to this lifestyle.....you can travel successfully and eat out too.  There is work involved and you might have to make different choices with restaurants but it can be done successfully and without fear.  Having a back up food supply is a good idea, of course, but don't be afraid to use apps for finding good places to eat and learning how to speak with restaurant personnel so they get how important it is that you eat safely.  Don't be afraid to venture out into the world!

 

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Higher dollar restaurants seem more willing to ensure that a meal is safe for you.  Ask to speak with the chef or restaurant manager before you order.  I'm finally getting a handle on the travel thing.  I always carry Go Picnic meals, indiv. packets of peanut butter, boiled eggs, instant hot cereal, granola bars, crackers, and fruit.  I have frozen soups, chills, etc. that I put in a cooler and heat in a small crockpot.  A local grocery store is a godsend for picking up yogurt (if you can eat it), fruit juice, bags of salad...

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As a rule of thumb I try to eat mostly at restaurants that have an established protocol for G.F. food. Places like Red Robin and P.F. Chang's for example. Red Robin's is very careful of CC and even puts the "allergen" orders on different colored plates. 

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Well thanks for the support Gemini. Nothing like a little sympathy, whew! I feel so much better being told how incompetent I am. You've never been down the road that I have so what do you know what I'm doing or what opportunities I have to eat safely? Oh but I'm just a hypochondriac because of anxiety? Yes the Reese's wasn't great, but I was in a literal one horse town with a single restaurant open that was a pizzeria. You eat there without getting sick.

Don't you dare judge me. Jerk.

For the rest of you who are kind and supportive I found an awesome totally gluten-free place in a bigger city that is going to fuel me today. Im getting a meal to go so I can have a good lunch tomorrow too!

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I'm glad that you found a safe place to eat. There's nothing like that feeling of relief when I find a celiac friendly restaurant to eat at! What is really cool is when you can find an exclusively gluten free restaurant to eat at. They're semi hard to find, but they are out there!

 

It's so frustrating when things don't go as planned on the road, but you can be assured that it will get easier in time and with practice. The gluten free diet has a huge learning curve, that's for sure!

 

I second Across's suggestion, Amy's frozen dinners are a great contingency plan. I'm going to a mother-daughter retreat with my girls in a couple months and I think that I'm going to be doing a number of Amy's dinners to make things simple, since I can't eat most of the cafeteria food there. I love Amy's dairy free lasagna and macaroni and cheese! 

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I always shake my head in wonder why other people have so much trouble traveling and eating as a celiac when sensitve as all hell me can do so with little trouble.  I am talking international travel here but to be honest, Europe is much more celiac savvy than the US is, although it is getting much better here with each passing year.

 

The Find Me Gluten Free website is hardly useless and I would urge other people not to give up so easily and trash good websites that many others use and find helpful. 

I have never failed to eat safely when ordering the safest possible meal.......protein, salad or veg and a starch, all basically prepared for those times when you are worried it might not work out.  I usually always eat brekkies in the flat I rent because finding gluten-free brekkies is harder than dinner.  French places in Europe do a good breakfast and I have never been glutened in one of those.....they get the gluten issue because they are about the most food smart people on the planet.  Eggs, smoked salmon, tomatoes, mushrooms....all easily prepared gluten free without cc.

 

The only people who might find it impossible are those with multiple food allergies.  That is a no brainer.  But, honestly....where the hell are you people going that you seem to think everyone else on the planet is stupid and can't get anything right? Maybe all this anxiety and anger about having to work harder when traveling gluten free may be causing some of your symptoms? You got cc'd eating soup and salad at a hotel...healthy food......but you are OK eating Reese's PB cups and cookies for dinner?  If I ate that junk for dinner, I'd be sick.

 

For anyone new to this lifestyle.....you can travel successfully and eat out too.  There is work involved and you might have to make different choices with restaurants but it can be done successfully and without fear.  Having a back up food supply is a good idea, of course, but don't be afraid to use apps for finding good places to eat and learning how to speak with restaurant personnel so they get how important it is that you eat safely.  Don't be afraid to venture out into the world!

 

Well, there is a big difference between traveling in areas that are gluten-free vs traveling in the middle of nowhere that has a choice of eating gas station food or McDonald's where no one in the restaurant has even heard of the gluten-free menu.  The find me gluten-free app pulls up every single restaurant in my area, including pizza places that have NOTHING gluten-free, so it is worthless to me, not to mention that it didn't pull up the one gluten-free restaurant that was close to the last hotel I was at, owned by a Celiac even...so, tell me again how wonderful this app is?

 

Also keep in mind, some of us are new at this, so there is a learning curve.  Even some traditionally gluten-free places, or those that have good gluten-free practices, don't always do what they are supposed to.  I ate at Olive Garden a couple weeks ago, asked the questions, how things were prepared, they have gluten-free pasta, waitress even said "no croutons, right"...sounded great, until my salad arrived with crouton crumbs on it and she brought me breadsticks....

 

No one said it wasn't work, but sometimes it is just downright impossible to find gluten-free foods that are healthy.  I'll take you on one of my road trips sometime and see how well YOU do eating nothing but gas station food...and not even nice gas stations, talking tiny little stores with 1 or 2 aisles of "food".....

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I spent 2 weeks in the American south last month, and I had a terrible time too. Travel has historically been very much about eating for me, and having to manage frustration and anxiety every time we to went to eat was exhausting and depressing.

+1 for fancier restaurants. It's not a practical solution for everyday, but if you can save up for a pricier place every few days, chances are they will be much more knowledgable and patient around your needs. Especially so over the phone if you call ahead to inquire.

We kept safe meat, cheese and crackers for lunch times on the road and we got by ok. It was far from ideal, but at least it took away the frustration around mealtimes and let me enjoy the non-eating parts of the trip.

Consider also looking for menus/menu items with dead-simple ingredient lists, essentially facilitating a whole foods diet. My one success with southern bbq was plain smoked chicken on a baked potato. Certainly was at risk for cc, but given the base ingredients, they would have had to go out of their way to put it near gluten-free ingredients. That was a memorably safe meal.

Also, you might post a thread about an upcoming destination city on this forum. I did that for a few spots near the end of my trip and folks were most helpful with suggestions of places they visited.

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    • Will my doctor test me? So many symptoms...
      Yep, get tested for celiac.  You have plenty of digestive symptoms to indicate it.
    • Weird Reaction
      Hi Richie, It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable. Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten. Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.  
    • Weird Reaction
      Hi Richie,  Glad you are feeling better. I wondered have you been officially diagnosed with coeliac disease? Just wondering as you say you are anaemic, that is one of the symptoms of coeliac disease, along with other general malnutrition. You don't need to eat meat for iron though, you can get it from non-heme foods, like spinach or parsley. Just be careful with the drink with barley, it may be that you only start to have symptoms if you consume a lot of it, but if you have coeliac disease the damage is still been done to your gut regardless of whether you have symptoms or not, which will ultimately lead to malnutrition as well as other things.
    • Weird Reaction
      I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system. I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.    I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!    
    • Will my doctor test me? So many symptoms...
      Welcome, @iwillmoveamountain! Of course you are not wrong to pursue getting testing for celiac. My advice is to drop that doctor and find a new one, preferably one who is celiac savvy, and who will listen to you and test you for the disease.  
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