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First Out-Of-Town Trip Since Diagnosis. Big Girl Pants.


C-Girl

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C-Girl Contributor

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 s$#&. 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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kareng Grand Master

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.

cyclinglady Grand Master

Hang in there!

GottaSki Mentor

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

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

SMRI Collaborator

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  Open Original Shared Link  .  If nothing else you can get some frozen dinners that are gluten-free and warm them in the microwave at the hotel.

cap6 Enthusiast

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. 

BethM55 Enthusiast

Sounds like you have maintained at least some sense of humor, good for you!  Perhaps this article might help?    

 

Open Original Shared Link


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dilettantesteph Collaborator

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.

SMRI Collaborator

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

across Contributor

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!

C-Girl Contributor

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 s$#&, because one of the restaurants given high marks on the Find me gluten-free app turned out to be total bulls$#& 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 bulls$#& that I have to carry a f$#%ing 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....

GottaSki Mentor

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 :)

SMRI Collaborator

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 s$#&, because one of the restaurants given high marks on the Find me gluten-free app turned out to be total bulls$#& 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 bulls$#& that I have to carry a f$#%ing 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  Open Original Shared Link 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.  

dilettantesteph Collaborator

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.

SMRI Collaborator

Yep..  Open Original Shared Link

cyclinglady Grand Master

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.

C-Girl Contributor

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  Open Original Shared Link 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.

GottaSki Mentor

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 .

Gemini Experienced

 

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 s$#&, because one of the restaurants given high marks on the Find me gluten-free app turned out to be total bulls$#& 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 bulls$#& that I have to carry a f$#%ing 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!

 

gilligan Enthusiast

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...

BlessedMommy Rising Star

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. 

C-Girl Contributor

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!

BlessedMommy Rising Star

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! 

SMRI Collaborator

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".....

jddh Contributor

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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      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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