I Hate When We Have To Make Decisions Because Of Our Disease

[T.H.]

I just made a decision today, and I'm honestly just...I dunno...sharing? Sharing in a way that's really, really close to massively whining like a baby, but I'll pretend is actually sharing?

I don't know about everyone else here, but I have an issue with inhaled gluten. It's not all the time, but I'd say at least half the time I go into a grocery store, maybe more, I have a nasty reaction within minutes if I accidentally go into the bakery section.

I'm kind of ditzy in real life, so this happens more than you might think. I'll forget which store I'm going to, enter on the wrong side, and wham, reaction.

So now, I wear a mask to go into grocery stores, and with that, I can last maybe 40-60 minutes before I start having issues. Aside from the few tries here and there that have failed, every single time, I don't go to restaurants that serve gluten, I don't go into coffee shops because I have a similar issue with coffee (I'm allergic to it, even inhaled). I can't visit people during meal times if they eat gluten.

It sucks, but I'm used to it more now. I meet people at parks or out on hikes, or where people are having events outdoors, or have people over to my house instead of going to theirs.

However we just had an opportunity to go to Washington DC. My hubby is going to a conference there for a week, so me and the kids could have gone, stayed for free at the hotel, had a lovely time. I've never been there. I have always wanted to go.

And I don't think I can. I have yet to fly on an airplane since being diagnosed and becoming so sensitive to all this crap. And all I can think is: 7 hours on a flight with recycled air where lots of people will be eating pretzels and drinking coffee. My husband is flying from another city, so it would be me alone with the kids, in a situation that, if it goes bad, could literally end up with me trying to change planes while vomiting, on the verge of passing out, and unable to even walk.

I'd hoped to try maybe an hour or two flight, with my hubby with me, as a trial to see if I can tolerate flying. There's no chance to do this before the Washington DC trip. And I've been thinking that maybe it'd be okay, maybe I could do it. It probably would be no problem at all.

But I finally had to take a long look at what the worst case scenario is, and realized I just can't do it. It would mean potentially putting my kids in a situation where the only adult in charge might be completely incapacitated, possibly when we're changing planes in a city hundreds of miles from anyone we know. Considering that I've yet to make it even 2 hours without getting sick in a place where gluten food and coffee are consumed, this seems like more of a risk that I should take.

I hate this! I want to just ignore it all and assume it'll be fine, you know? I want to go on a vacation and not worry about food and not have to stop myself from taking this great opportunity. Even talking about not going right now, part of me is trying to talk myself into it, and making excuses, even when my folks and my friends are all telling me not to do it, because they've all been there when I've been knocked down just going out somewhere.

So...yeah. Whining, big time, about something I can't change and should be used to by now. Thanks for putting up with it, guys! I know a lot of you have been there, unable to do something, or having to leave an event early, because it was making you sick.

So...sympathy for all of you who've gone through this. I'll get over there eventually...maybe a really, really long car trip.

[Takala]

Flying = tubular tin germ breeding encapsulation overseen by Security Theatre of the Absurd.

DC is vastly overrated as a tourist destination anyway, especially in the summer, when most of the inhabitants (lobbyists and consultants....) are trying to get out of DC because of the unbearable humidity. Plus the airlines can be total ********s about keeping to schedules, which means you are potentially trapped in a venue (the airport, past security) for hours, waiting for another plane repair or crew, unless you give up and leave, without any safe food to be found AND the airport security people don't want you carrying certain items with you, like large amounts of decent safe gluten-free food that is not trail mix. Then they make you buy the water so you don't die of dehydration from eating squirrel food to survive waiting in line for five hours, all for the privilege of having the stewardesses be really snitty with you for getting on their airplane with unchecked luggage.

Mind you, they don't treat the average business class frequent flyer this way. The harassment is saved for the average tourist they know they'll never see again.

Really, if you want to travel, just set it up so you are doing it by automobile or by an RV camper. Must less stressful, much safer, and you won't be made to feel like you're somehow creating a giant nuisance for spending big bucks to have people treat you like a sack of sprouted potatoes that must be air freighted to the trash dump under armed guard.

[Juliebove]

I went to DC once and was less than thrilled. Heat and humidity, yes. Rain? Always at 5:00. Right when the museums closed. We had walked over there and there are no restaurants or bars to duck into. So we got drenched.

Crime? Rampant! Some guy was shot right near our hotel. And I was shocked at all the slums there. Really not a nice place to visit except for specific certain places.

I was also stuck at Dulles (sp?) airport for hours. I was flying into PA and that was where I was to change planes but there was a big flight delay. The airport is huge and we had to take a shuttle. It was like...hurry up and wait!

If it's any consolation, I feel I can't fly for different reasons. I'm diabetic and have to take insulin. I fear there would be a problem getting on the plane with the needles and insulin. Yes, I know they have to let you with a Drs. note but I think you are limited to what you might need on the plane. I also take a ton of medications and supplements. Since you are limited as to the size of the carryon, I fear that those alone would fill up my carryon for a two week trip. Having had my luggage lost once, I want to travel with at least a change of underwear and clothes for the next day.

And then of course there is the issue of food. I don't think most airlines offer meals any more. Not that I could actually eat the meal. Gluten is not the issue for me but I have other food allergies. I just know I would have to pack food and with all the restrictions it wouldn't be much of anything I'd want. I used to always travel with extra bottles of soda and water because they never seem to give me enough. I've been told those days are over too.

Plus I always seem to get sick when I fly. Usually ear and/or sinus infections. And I am very uncomfortable on the plane. All that stale air makes it hard for me to breathe and dries out my eyes.

So... I won't fly unless I have no other choice.

[GlutenFreeManna]

((HUGS))

I have not flown since I developed the anaphylactic dairy allergy. But the food issues are not the only thing keeping me from flying. I'm more upset by the intrusive pat downs. I refuse to let someone I don't know touch my genitals. I don't care if it's fast and over the clothes. I have read the stories and it seems like they target overweight people, people wearing skirts/dresses and people with medical equipment for extra screening. I'm overweight and I feel most comfortable wearing skirts. I worry the epipen would be deemed a "threat" and I would have to do the "enhanced" pat down because of it if not because of my size and my clothing. I know they are supposed to let it through and they are supposed to let additonal food through as well. Well just last month (in June) my husband flew and they would not let him take a canister of Lays Stacks with him through security. He had a short layover and was not going to have time to eat running between planes. His flights were during meal time but they were too short to offer meals. He doesn't even have any food restrictions but this was a big problem for him. He feels they did it to force him to buy the overpriced/gross food on the plane. He ended up eating the chips at 3 PM before going through security and then starving until his flight got in at 9 PM and he could go get a late dinner. I'm hypoglycemic and that would NOT work for me. I would end up passed out on the floor of the airport or on the plane, shakey and unable to walk. And then they would deem me a threat and try to kick me off the plane. I had an asthma attack one time right when I got on a plane (it was exercise indiuced from running to catch the flight) and they were about to kick me off because they thought it was a panic attack. I was trying to explain (even though I couldn't talk) I needed my inhaler from my bag in the overhead and they were angry that I wasn't sitting down and strapped in for take off. The flight attendant threatened to eject me from the plane. I was very close to passing out because I couldn't breath! Fortunately a fellow passenger said "I think she's have an atshma attack" and asked me if I had an inhaler. I was able to nod and point and they got down my bag to get the inhaler. In 5 minutes I was breathing better and ready to take off. The flight attendant never even apologized. I have nightmares about this types of things or about being stranded in an airport with no safe food. I have a medical alert bracelet now just because I'm terrified of being injured or without safe food or getting a reaction to something when my husband's not with me. I'm also hoping if I ever do get the courage to fly again it will help convince authorities to let me take my (dry, sealed, shelf stable) food through security. Wow. I feel better just getting all this out too! Thanks for starting the thread. Rant or whine away!

[dilettantesteph]

Last time I flew was just before diagnosis. I understand your worries. I was in the D.C. area for a wedding in late August many years ago and the heat and humidity was awful.

[GFinDC]

I don't know if this would work for you or not. But they do have Amtrak service to DC and there are bus lines that stop in too. It does get kind of warm and humid here some times. The Potomac River and the Annacostia River run through DC. My neighborhood used to be called "Swamp Poodle" many years ago. There was a creek that ran though it at that time. Rock Creek Park still has a good size creek that runs North to South through DC and is a popular park for people to visit. And we are not far from the Chesapeake Bay too. This has been a fairly mild summer so far this year. The biggest source of hot air is the Capitol building but the congress takes off in August for a recess. Otherwise we'd all melt from the combined political wind and the August heat wave. Some guy rode his horse drawn covered wagon into DC not long ago. Another possible mode of transport. But I don't think he is planning a return trip, as he donated his horses to the Obamas.

One thing to consider also is visiting the museums on the mall can be pretty exhausting. The mall is a large area and getting around the museums takes a lot of walking. If you do come planning to take a few days to visit the museums is better than doing it all in one day. Comfortable walking shoes are a must have. Metro is the subway system and is great for getting around town fairly cheap and easy.

Swampoodle Dc

Open Original Shared Link

home > news > weird

Covered Wagon Demonstration Reaches D.C.

Open Original Shared Link

[Salax]

That stinks! Just throwing this out there, would a train be an option? You could get your own "room"? I dunno. I feel for ya though.

[T.H.]

Thank you guys for all the support!

And...wow, things exploded just a day or two after I wrote this! I was discussing it with my folks, who live one state east of us, and it turns out that they had been planning to go see an ailing friend of my mother's (who lives in Washington DC) sometime in the next couple of months.

So we quickly arranged things, and now I'm driving for a day over to them, and then we're all road-tripping in their honkin' big truck, carrying our food with us (my father is celiac too), and heading out to washington DC after all!

I'm really excited - except for the massive humidity of death. The heat, that's okay. It's been over 110 here for the last few weeks, anyway, so that's not a big deal. But the humidity...oy.

Still, being able to go is amazing, and bringing my own food makes me feel so, so much better, and safer, even if the roadtrip is going to be long.

...I've been calling farms ahead of time along the way if I can find them. Even found a pasture fed beef/chicken/pork ranch that's 7 miles off of the freeway we're using, half-way through the journey (it's going to take 4 days), who said we can pick up meat at the farm on our way!

Very awesome.

So thank you, thank you everybody, and woo hoo that I'm getting to go when I had resigned myself to not going at all!

....now I have my food packed, but I'm leaving tomorrow and realized I don't have any clothes packed at all, LOL. Priorities, right?

And anyone know of any good little health food stores/farms, farmers markets along interstate 40? We're going through New mexico, texas, oklahoma, tennessee, and then up virginia. I have found a few for the kids, but I know I'm probably going to be stuck with whatever I bring unless I can find a farmers market that's going on when we happen through and has stuff I can use, you konw?

Just.....weeeeeee. I'm giddy. Freaked out and hoping like crazy that this works and is wonderful rather than me getting sick and bleh through the whole thing. But...really, really hoping!!

[GlutenFreeManna]

Thank you guys for all the support!

And...wow, things exploded just a day or two after I wrote this! I was discussing it with my folks, who live one state east of us, and it turns out that they had been planning to go see an ailing friend of my mother's (who lives in Washington DC) sometime in the next couple of months.

So we quickly arranged things, and now I'm driving for a day over to them, and then we're all road-tripping in their honkin' big truck, carrying our food with us (my father is celiac too), and heading out to washington DC after all!

I'm really excited - except for the massive humidity of death. The heat, that's okay. It's been over 110 here for the last few weeks, anyway, so that's not a big deal. But the humidity...oy.

Still, being able to go is amazing, and bringing my own food makes me feel so, so much better, and safer, even if the roadtrip is going to be long.

...I've been calling farms ahead of time along the way if I can find them. Even found a pasture fed beef/chicken/pork ranch that's 7 miles off of the freeway we're using, half-way through the journey (it's going to take 4 days), who said we can pick up meat at the farm on our way!

Very awesome.

So thank you, thank you everybody, and woo hoo that I'm getting to go when I had resigned myself to not going at all!

....now I have my food packed, but I'm leaving tomorrow and realized I don't have any clothes packed at all, LOL. Priorities, right?

And anyone know of any good little health food stores/farms, farmers markets along interstate 40? We're going through New mexico, texas, oklahoma, tennessee, and then up virginia. I have found a few for the kids, but I know I'm probably going to be stuck with whatever I bring unless I can find a farmers market that's going on when we happen through and has stuff I can use, you konw?

Just.....weeeeeee. I'm giddy. Freaked out and hoping like crazy that this works and is wonderful rather than me getting sick and bleh through the whole thing. But...really, really hoping!!

That's great! You'll probably have tons more fun than if you had flown. I love to road trip. Have you checked eatwild.com to find farms along your route?

[anabananakins]

Thank you guys for all the support!

And...wow, things exploded just a day or two after I wrote this! I was discussing it with my folks, who live one state east of us, and it turns out that they had been planning to go see an ailing friend of my mother's (who lives in Washington DC) sometime in the next couple of months.

So we quickly arranged things, and now I'm driving for a day over to them, and then we're all road-tripping in their honkin' big truck, carrying our food with us (my father is celiac too), and heading out to washington DC after all!

I'm really excited - except for the massive humidity of death. The heat, that's okay. It's been over 110 here for the last few weeks, anyway, so that's not a big deal. But the humidity...oy.

Still, being able to go is amazing, and bringing my own food makes me feel so, so much better, and safer, even if the roadtrip is going to be long.

...I've been calling farms ahead of time along the way if I can find them. Even found a pasture fed beef/chicken/pork ranch that's 7 miles off of the freeway we're using, half-way through the journey (it's going to take 4 days), who said we can pick up meat at the farm on our way!

Very awesome.

So thank you, thank you everybody, and woo hoo that I'm getting to go when I had resigned myself to not going at all!

....now I have my food packed, but I'm leaving tomorrow and realized I don't have any clothes packed at all, LOL. Priorities, right?

And anyone know of any good little health food stores/farms, farmers markets along interstate 40? We're going through New mexico, texas, oklahoma, tennessee, and then up virginia. I have found a few for the kids, but I know I'm probably going to be stuck with whatever I bring unless I can find a farmers market that's going on when we happen through and has stuff I can use, you konw?

Just.....weeeeeee. I'm giddy. Freaked out and hoping like crazy that this works and is wonderful rather than me getting sick and bleh through the whole thing. But...really, really hoping!!

YAY!!!! I'm so glad you get to go! I love DC. I'm from Australia but my best friend lives there and I've visited a bunch of times. I've never felt at all unsafe in any of the touristy areas (and prior to my first trip to the US I was super intimidated, it seemed a big and scary country - I know now that it's so not the case!)

I can only imagine how humid it is right now... I usually go in October and it's been hot then too. But the museums will be nice and cool :-)

[T.H.]

Have you checked eatwild.com to find farms along your route?

Yes, I did! There's one in TN that I'm hoping to stop by, but we're trying to get in touch, still. Playing a lot of phone tag.

[kareng]

I am starting to see the potential in RVing! Use to think it was silly to haul a whole house around.

Have a fun trip. Post the places you got food with a little review, please.

[cyberprof]

I am so stubborn that sometimes I don't see other options when I get roadblocks. So it's great that you were able to find away around flying, and I commend you for your determination. What a great trip for your kids - I think every kid should go to DC before they graduate from High School.

[ecf]

If it's any consolation, I feel I can't fly for different reasons. I'm diabetic and have to take insulin. I fear there would be a problem getting on the plane with the needles and insulin. Yes, I know they have to let you with a Drs. note but I think you are limited to what you might need on the plane. I also take a ton of medications and supplements. Since you are limited as to the size of the carryon, I fear that those alone would fill up my carryon for a two week trip. Having had my luggage lost once, I want to travel with at least a change of underwear and clothes for the next day.

And then of course there is the issue of food. I don't think most airlines offer meals any more. Not that I could actually eat the meal. Gluten is not the issue for me but I have other food allergies. I just know I would have to pack food and with all the restrictions it wouldn't be much of anything I'd want. I used to always travel with extra bottles of soda and water because they never seem to give me enough. I've been told those days are over too.

Wanted to offer some encouragement! You can take as much medication through security as you need - just declare it to TSA as medically necessary. I routinely fly with a big bag of meds in addition to the standard allowance of liquid toiletries, and carry on a nebulizer for asthma in addition to my carryon bag.

And the food restrictions aren't all that bad, there is actually a lot of room to get creative - just make sure whatever you bring isn't at all liquid-y. I fly internationally every few months and bring all of my food in tupperware - usually fried rice, sauteed spinach and chickpeas, fresh fruit that doesn't produce a lot of juice (grapes, sliced apples, etc), homemade trail mix and some cookies or snack bars.

And way to go, T.H. - hope you are having a blast!

[love2travel]

Wanted to offer some encouragement! You can take as much medication through security as you need - just declare it to TSA as medically necessary. I routinely fly with a big bag of meds in addition to the standard allowance of liquid toiletries, and carry on a nebulizer for asthma in addition to my carryon bag.

And the food restrictions aren't all that bad, there is actually a lot of room to get creative - just make sure whatever you bring isn't at all liquid-y. I fly internationally every few months and bring all of my food in tupperware - usually fried rice, sauteed spinach and chickpeas, fresh fruit that doesn't produce a lot of juice (grapes, sliced apples, etc), homemade trail mix and some cookies or snack bars.

And way to go, T.H. - hope you are having a blast!

As you say, there are are allowances on flights for medically necessary things. As I have chronic back pain I must take gel packs, lumbar support, etc. I always take a doctor's note but so far have not even had to use it. Sometimes I wonder why I put myself through the physical torture of flying (I cry with pain each time) but I must not stop living! We also have a house in Europe so that is plenty of incentive.

Never give up on what you want to do.

[T.H.]

Well, I'm half way through the trip now, and I gotta say....not goin' so well. I'm having a lovely ole pity party right now, sigh. Planning needs to be much more intense next time, it looks like.

Farms and health food stores along our route all didn't pan out, or I couldn't get in touch with them properly to even arrange to meet (like the lovely meat place). Might have a few options on the way back, if we're willing to go 4-5 hours out of our way to stop by, though.

Whole Foods here has a few little things my kids can eat, but it's just unsafe enough that you can start seeing it in their behavior, like the MASSIVE hysterical anxiety attack by my daughter that waxed and waned for about 4 days.

We've been to a couple farmer's markets here - took 1 whole day just to look for food - and zippo. I couldn't find anything where the plant wasn't at the very least sprayed with something, at some point in the produce's life. Finally gave up and tried some produce that was organic and only sprayed when the plant put up leaves, but not when it had flowers or fruit/veggies.

Seems sort of okay for the kids, but it's making me sick every time I eat. With so little food for the kids, I've been feeding them from the food I'd hoped to eat, so now I'm down to local food that makes me mildly ill every time I eat. I'm doing the 'don't eat until you're starving' thing, because it's so miserable every time I do. Grrrr.

I'll be honest, I'm pretty dispirited right now. My husband is at his conference all day, going to classes and being fed. Me and the kids are walking miles a day, carrying all our food with us, feeling exhausted and slightly ill, in high heat and humidity...and he's wondering why we're not doing more and seeing more sights.

Just....dang it all! I was really hoping this would work! I hate that it's falling apart. Especially the little small things. I LOVE museums. My kids are usually fine with them, but they're so miserable on the food and crabby from being sick that making it through even 1/4 of a museum is an all day effort. And most of the time, I'm holding up my daughter as she leans on me and complains that she's tired and doesn't want to walk any more, or keeping my son from bursting into tears because he 'hates' this food and why can't he have normal food anymore?

And if I try and take us all back to the hotel and let them swim and just relax and rest, my husband starts in on 'why aren't you out seeing thing? This is your one chance to do this and you're missing it? You should be making them go out. They'll thank you for it when they're older.'

And then he's frustrated with them if I do go out and they DON'T enjoy it...as though the kids are just being bratty when they're really pretty darn miserable and acting like anyone would when they're hot and miserable, ya know?

Just...sigh. Sorry, like I said, pity party moment. Or two or three, really. Needed to vent and you know how it is when you're traveling - can't exactly vent at hubby in front of the kids, and there's nowhere else to go, right?

Today I finally said, 'no.' We're sleeping in, the kids and I are resting, and if we feel like going out, we will, and if we feel like crap, we're going to stay inside and recover. Period.

Thought I'd get my whining in now, because I have a week more of this and frankly, I have a feeling my whining is gonna be a lot less whiny now than it will be in a week, eh?

I truly hope the rest of you are getting along much better and eating safely and feeling WELL. And hopefully next time I travel, I'm going to post the most amazing success story ever, with farm suggestions to go with it!

[kareng]

Your kids are pretty young, if I remember right. I think its normal, even if they were eating happily to get crabby. The heat, the walking & only interested in some of the things they are seeing. Would make me whiny & crabby.

Its a vacation. Do what you want. If you want to go to a movie or order in one, do it. Sleep. Swim. Teach them a card game.

We took my kids in November (weather not bad). They were 8 and 11. They had crabby moments from boredom & tired of walking.

Relax. Tell hub to relax.

[GFinDC]

I sent you PM TH, please check and call if you'd like.

Paul GFinDc

[dilettantesteph]

I'm sorry you are having problems. Next time, bring more food. Think of it as only the first trip. This is the one to figure out how to better do it next time. Buy lots of bananas. Can you eat those? We do well with organic or conventional.

Poor kids, travel can be hard on them. Poor you. It is hard for you to deal with it all. Sorry hubbie isn't being more supportive.

Hope the rest goes better.

[Marz]

Bleh, sorry it's not working out as well as you hoped Is there any food you can get that you know is 100% safe that you can just eat every day - might be bland but who cares if you're feeling OK?

I think small focused trips might be more enjoyable than long trips trying to do everything at once, though that's probably what you're already doing... quality vs quantity - enjoy the small sights.

Being around wheaty people and crumb-filled museums when you're so sensitive must be torture Hope you get a few special moments that make the trip worthwhile, sometimes it's just a special museum or awesome sight that can really stay with you, even if you're sick as a dog the rest of the time. Try not to feel bad about what you're missing, and enjoy what you can do, even if it is just lying by the pool the whole day Good luck with the rest of the trip!

[GlutenFreeManna]

Well, I'm half way through the trip now, and I gotta say....not goin' so well. I'm having a lovely ole pity party right now, sigh. Planning needs to be much more intense next time, it looks like.

Farms and health food stores along our route all didn't pan out, or I couldn't get in touch with them properly to even arrange to meet (like the lovely meat place). Might have a few options on the way back, if we're willing to go 4-5 hours out of our way to stop by, though.

Whole Foods here has a few little things my kids can eat, but it's just unsafe enough that you can start seeing it in their behavior, like the MASSIVE hysterical anxiety attack by my daughter that waxed and waned for about 4 days.

We've been to a couple farmer's markets here - took 1 whole day just to look for food - and zippo. I couldn't find anything where the plant wasn't at the very least sprayed with something, at some point in the produce's life. Finally gave up and tried some produce that was organic and only sprayed when the plant put up leaves, but not when it had flowers or fruit/veggies.

Seems sort of okay for the kids, but it's making me sick every time I eat. With so little food for the kids, I've been feeding them from the food I'd hoped to eat, so now I'm down to local food that makes me mildly ill every time I eat. I'm doing the 'don't eat until you're starving' thing, because it's so miserable every time I do. Grrrr.

I'll be honest, I'm pretty dispirited right now. My husband is at his conference all day, going to classes and being fed. Me and the kids are walking miles a day, carrying all our food with us, feeling exhausted and slightly ill, in high heat and humidity...and he's wondering why we're not doing more and seeing more sights.

Just....dang it all! I was really hoping this would work! I hate that it's falling apart. Especially the little small things. I LOVE museums. My kids are usually fine with them, but they're so miserable on the food and crabby from being sick that making it through even 1/4 of a museum is an all day effort. And most of the time, I'm holding up my daughter as she leans on me and complains that she's tired and doesn't want to walk any more, or keeping my son from bursting into tears because he 'hates' this food and why can't he have normal food anymore?

And if I try and take us all back to the hotel and let them swim and just relax and rest, my husband starts in on 'why aren't you out seeing thing? This is your one chance to do this and you're missing it? You should be making them go out. They'll thank you for it when they're older.'

And then he's frustrated with them if I do go out and they DON'T enjoy it...as though the kids are just being bratty when they're really pretty darn miserable and acting like anyone would when they're hot and miserable, ya know?

Just...sigh. Sorry, like I said, pity party moment. Or two or three, really. Needed to vent and you know how it is when you're traveling - can't exactly vent at hubby in front of the kids, and there's nowhere else to go, right?

Today I finally said, 'no.' We're sleeping in, the kids and I are resting, and if we feel like going out, we will, and if we feel like crap, we're going to stay inside and recover. Period.

Thought I'd get my whining in now, because I have a week more of this and frankly, I have a feeling my whining is gonna be a lot less whiny now than it will be in a week, eh?

I truly hope the rest of you are getting along much better and eating safely and feeling WELL. And hopefully next time I travel, I'm going to post the most amazing success story ever, with farm suggestions to go with it!

So sorry it's not working out better. I hope the rest of your trip is better. i think you have the right idea abotu nto doing much when you feel like crap. I'm only a few hours south of DC and it has been aweful hot here the past week. I just moved across town in the heat and everyone was dripping sweat. Even without the food issues this heat can make you sick. stay inside. It's not worth it!

[cap6]

I'm so sorry! I know how hard it is to manage when you are the adult but I can't imagine how hard it must be with kids! Sending good thoughts.......

[T.H.]

Thanks for the good wishes, guys! We're on our way back now from DC - maybe 2 more days of traveling, now. Phew! Nearly back to safe food!

Lemmee see if I can answer everybody's comments. :-)

Your kids are pretty young, if I remember right. I think its normal, even if they were eating happily to get crabby.

Looks like our kids are just about the same age. :-) Mine are 9 and 13 now.

With the heat and constant walking, the kids definitely had some of the normal crabby moments. Sadly, there was definitely gluten issues mixed in, too. It's the 'gluten freak out' times that are so hard to cope with, partly because then I feel guilt on top of everything else, you konw? Sometimes, when it's mild glutening, it's hard for me to tell - I suppose like when it's hard to tell if the kids are coming down with a cold or if they're having a bad day. But when they really get hit, woah baby is it clear, just like watching them really sick and knowing that's not a normal 'bad day.'

My daughter's is the most clear. She has horrid stomach pain for a few hours, arms and legs that start to shake and are hard for her to move, she just wants to lie down and pass out somewhere and then the best part: days of anxiety attacks so bad that they go hours at a time, with hysterical irrationality that spins out of control into weeping, panicking, hyperventilating - it's really awful.

My son - on gluten, he just goes from periods of minor crabbiness to raging fits of screaming fury that are set off by absolutely nothing and go on for an hour or so at a time, usually. I can sometimes keep the fits from happening, but it's like walking a tightrope - I have to constantly think of everything that is likely to trigger them, which can be something as simple as 'how are you feeling today?' Seriously - that phrase set off an hour and a half of rage one time, oy.

Although at least I can laugh about some of the fits when my son was a toddler. He'd have a raging fit for over an hour straight, fall into an exhausted sleep, and then wake up and keep right on with the tantrum for another hour or so! I thought it was what the terrible twos must really be like, at the time, LOL. Thank god I was wrong and it's only when they're on gluten!

@GFinDC - thank you so much for all your help! I really appreciated the list of restaurants and ideas very much! :-D

Next time, bring more food. Think of it as only the first trip. This is the one to figure out how to better do it next time.

I think I'm going to definitely be viewing this as 'big trip trial #1.' My only worry is I'm not sure how to PACK more food for a trip like this. :-( We had a honkin' big pick up truck to bring all our stuff, and I still didn't have enough. Maybe just figure out how to get food that's more, hmmm, concentrated, LOL. Or find ways to ship food there ahead of time, maybe. Some of mine went bad, which may really be one of the bigger issues. I need less perishable stuff.

Is there any food you can get that you know is 100% safe that you can just eat every day...?

...Hope you get a few special moments that make the trip worthwhile, sometimes it's just a special museum or awesome sight that can really stay with you, even if you're sick as a dog the rest of the time. Try not to feel bad about what you're missing, and enjoy what you can do, even if it is just lying by the pool the whole day Good luck with the rest of the trip!

Sadly, no safe food really at the moment that I know works - partly because I'm still working on that at home, too. I was hoping bananas or avocados, but they're kind of hit or miss, depending on the store - have no clue why. I'm assuming something different with how or where they're grown.

But I very much did find something fun...after we left Washington DC, LOL. I much prefer the outdoors and nature rather than cities - even though there were some neat things to see in DC - so we stopped at the Smoky Mountains on a hike that's less popular, so hardly anyone there. Shade and plants and salamanders and waterfalls - I enjoyed it tremendously.

I hope the rest of your trip is better. i think you have the right idea abotu nto doing much when you feel like crap. I'm only a few hours south of DC and it has been aweful hot here the past week.

So funny that I managed to pick the time when the heat wave hits, LOL. Kinda par for the course this trip, heh. I kind of got hit bad on the trip back home so far. Like usual, once I get hit with gluten, it tends to affect my judgment...so on the first night after leaving DC, it's late, the kids are miserable and starving and crabby as heck, and we have no real food. And there's a restaurant near the hotel with a gluten-free menu.

And so I think: maybe I could do that. We'll be careful, I'll order something simple, on it's own pan, with no seasonings, talk with the manager - it could work. Maybe I've been so careful all this time and don't really need to and I might be okay if I tried a restaurant and was REALLY careful (like I said, NO judgment at all. I might as well have implanted a specially crafted moron brain for a few days, argh)

So I got steamed lobster tail (not a seafood place), no breading, no butter, no nothin', made on a special pan by itself, late at night when there's only one other couple in the entire restaurant having food made.

OMG, I was so freaking sick. 2 minutes after I had a couple bites and I could barely sit up. Vertigo and nausea and all sorts of fun from that point on...and I went hiking anyway. Really slowly, and had to hold onto trees and family sometimes, but I went anyway and I'm so happy I did. I needed some nature after all the noise and people of DC. And it was so beautiful.

Also a good reminder to remember that I canNOT trust myself when I've been glutened, not when it comes to safety. Jeesh. It really should be easier to hit yourself in the back of the head and say 'what were you thinking, dummy?'

@cap6 - thanks for the good thoughts! I am sure I must have felt them out in the Smokies. :-D

Anyway, again - thanks for the thoughts and advice and help and good wishes, guys! I'm definitely not giving up on the idea of traveling, but now I know I need to really up my level of planning. By a lot.

On the plus side, I actually got to get to know some more people - met up with some fellow gluten free folks along the drive, talked with even more, and while some of this was epic fail...some was pretty awesome, too. :-D

[padma]

Sorry you are having such a tough time with your trip. I have been there myself and it isn't much fun. It is one thing to travel with kids and have regular issues and another to be hungry. I try to find restaurants that have plain meats and plain vegetables. I had dinner tonight and had plain fish and plain beans and I am still well. It was an Italian restaurant. I am also allergic to dairy and 18 other things, so have even more restrictions. I find the "plain" food part saves me.

I gather you are relatively new to this diet. You know you are going to need to recruit your husband to be more understanding. One can not hide celiac. It IS a family problem. He needs to be your protector and your advocate, for you and your kids. When my partner goofs up and doesn't "get it" I let him know immediately, otherwise I am at risk.

I am sure you try your best, but you need him in your court, too..

I will keep you in my prayers to have some better solutions.

Well, I'm half way through the trip now, and I gotta say....not goin' so well. I'm having a lovely ole pity party right now, sigh. Planning needs to be much more intense next time, it looks like.

Farms and health food stores along our route all didn't pan out, or I couldn't get in touch with them properly to even arrange to meet (like the lovely meat place). Might have a few options on the way back, if we're willing to go 4-5 hours out of our way to stop by, though.

Whole Foods here has a few little things my kids can eat, but it's just unsafe enough that you can start seeing it in their behavior, like the MASSIVE hysterical anxiety attack by my daughter that waxed and waned for about 4 days.

We've been to a couple farmer's markets here - took 1 whole day just to look for food - and zippo. I couldn't find anything where the plant wasn't at the very least sprayed with something, at some point in the produce's life. Finally gave up and tried some produce that was organic and only sprayed when the plant put up leaves, but not when it had flowers or fruit/veggies.

Seems sort of okay for the kids, but it's making me sick every time I eat. With so little food for the kids, I've been feeding them from the food I'd hoped to eat, so now I'm down to local food that makes me mildly ill every time I eat. I'm doing the 'don't eat until you're starving' thing, because it's so miserable every time I do. Grrrr.

I'll be honest, I'm pretty dispirited right now. My husband is at his conference all day, going to classes and being fed. Me and the kids are walking miles a day, carrying all our food with us, feeling exhausted and slightly ill, in high heat and humidity...and he's wondering why we're not doing more and seeing more sights.

Just....dang it all! I was really hoping this would work! I hate that it's falling apart. Especially the little small things. I LOVE museums. My kids are usually fine with them, but they're so miserable on the food and crabby from being sick that making it through even 1/4 of a museum is an all day effort. And most of the time, I'm holding up my daughter as she leans on me and complains that she's tired and doesn't want to walk any more, or keeping my son from bursting into tears because he 'hates' this food and why can't he have normal food anymore?

And if I try and take us all back to the hotel and let them swim and just relax and rest, my husband starts in on 'why aren't you out seeing thing? This is your one chance to do this and you're missing it? You should be making them go out. They'll thank you for it when they're older.'

And then he's frustrated with them if I do go out and they DON'T enjoy it...as though the kids are just being bratty when they're really pretty darn miserable and acting like anyone would when they're hot and miserable, ya know?

Just...sigh. Sorry, like I said, pity party moment. Or two or three, really. Needed to vent and you know how it is when you're traveling - can't exactly vent at hubby in front of the kids, and there's nowhere else to go, right?

Today I finally said, 'no.' We're sleeping in, the kids and I are resting, and if we feel like going out, we will, and if we feel like crap, we're going to stay inside and recover. Period.

Thought I'd get my whining in now, because I have a week more of this and frankly, I have a feeling my whining is gonna be a lot less whiny now than it will be in a week, eh?

I truly hope the rest of you are getting along much better and eating safely and feeling WELL. And hopefully next time I travel, I'm going to post the most amazing success story ever, with farm suggestions to go with it!

[dilettantesteph]

Sadly, no safe food really at the moment that I know works - partly because I'm still working on that at home, too. I was hoping bananas or avocados, but they're kind of hit or miss, depending on the store - have no clue why. I'm assuming something different with how or where they're grown.

I was sorry to hear that. I thought that bananas would be my safe fruit because I have managed to eat them organic or conventional, and from two different stores! Too much optimism, I know.

A compact food idea is dehydrated. I've been doing a lot of dehydrating with my extra veggies and making fruit leather with fruit. I plan on making lots of soups with the veggies this winter. It isn't exactly what you want in a heat wave, but at least it would be safe.