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


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#16 T.H.

 
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Posted 20 July 2011 - 05:44 AM

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. :rolleyes:

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!
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


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#17 kareng

 
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Posted 20 July 2011 - 07:59 AM

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.
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#18 GFinDC

 
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Posted 20 July 2011 - 10:01 AM

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

Paul GFinDc
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#19 dilettantesteph

 
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Posted 20 July 2011 - 10:17 AM

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.
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#20 Marz

 
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Posted 22 July 2011 - 12:21 PM

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!
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#21 GlutenFreeManna

 
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Posted 24 July 2011 - 03:14 PM

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. :rolleyes:

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!
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#22 cap6

 
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Posted 24 July 2011 - 04:29 PM

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.......
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#23 T.H.

 
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Posted 24 July 2011 - 07:30 PM

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! :blink: 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! B)


@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. :D


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
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#24 padma

 
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Posted 24 July 2011 - 09:26 PM

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. :rolleyes:

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!


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#25 dilettantesteph

 
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Posted 25 July 2011 - 05:17 AM

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.
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