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


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24 replies to this topic

#1 T.H.

 
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Posted 07 July 2011 - 09:34 PM

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. :rolleyes: 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. :)
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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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#2 Takala

 
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Posted 07 July 2011 - 11:22 PM

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.
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#3 Juliebove

 
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Posted 08 July 2011 - 01:13 AM

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.
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#4 GlutenFreeManna

 
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Posted 08 July 2011 - 04:15 AM

((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!
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A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

#5 dilettantesteph

 
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Posted 08 July 2011 - 05:36 AM

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.
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#6 GFinDC

 
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Posted 09 July 2011 - 05:55 AM

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.

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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

#7 Salax

 
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Posted 11 July 2011 - 09:29 AM

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. :(
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#8 T.H.

 
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Posted 11 July 2011 - 01:56 PM

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!!
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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


#9 GlutenFreeManna

 
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Posted 11 July 2011 - 02:09 PM

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. :lol: Have you checked eatwild.com to find farms along your route?
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A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

#10 anabananakins

 
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Posted 12 July 2011 - 07:45 PM

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 :-)
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#11 T.H.

 
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Posted 14 July 2011 - 05:57 AM

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.
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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


#12 kareng

 
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Posted 14 July 2011 - 06:10 AM

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

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

 
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Posted 15 July 2011 - 06:30 PM

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.
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Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

#14 ecf

 
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Posted 18 July 2011 - 11:50 PM

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!
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#15 love2travel

 
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Posted 19 July 2011 - 07:48 AM

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. :)
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.




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