r/Celiac • u/SekaiIchiapple Celiac • 13h ago
Rant My first trip abroad, so nervous & already never want to fly with United airlines again
Hi all. I was diagnosed with celiac 1 year ago. This year we wanted to go somewhere cool that we hadn’t been before we have a baby in the next few years, but I wanted to play it safe so we decided to go to Scotland (we’ve both been before). I’m from the U.S., so I believe it will probably be the same / easier to be safe in Scotland, also easier since everyone will speak English. I have a million places saved on my maps from FMGF with recent reviews from symptomatic celiacs.
I called United’s accessibility line to see if I could be cleared for an extra small bag (small cooler) to bring food because of my celiac and they said no. I usually bring carry ons only because I have had bad experiences with my luggage being lost, so I have very little room for even clothes & other necessary items for our 10 day trip abroad. The people I chatted with were so unhelpful, they even connected me to their manager who didn’t seem to know their policy & was rude to me.
I also called today to make sure my gluten free meal (which, btw, is called “gluten friendly” so I was going to play by ear wether I could actually eat it or not) would be on my flight. They said they can confirm it’s been “requested” but that there’s no way to tell if it will actually be on the flight. This was a different woman than I had talked to before and she was also extremely rude.
I was already stressed about the trip just because I get travel anxiety but this made me so upset. I cannot believe they can’t get something like this confirmed for an 8 HOUR FLIGHT. I don’t know if other airlines are better but it’s making me never want to fly United again.
I have some snacks & backpacking meals packed but Jesus Christ I cannot believe how awful this experience has been & I’m not even on the plane yet.
Edit: some folks seem to think I am saying I’m free balling and not bringing any food and just determined to be upset & hungry. This is my first trip abroad and I labeled this post as a rant. I’m just frustrated for all of us with how little support we have. It makes me think more broadly about all the stories where folks have to bring a wheelchair on a plane and it gets destroyed. My “struggle” is nowhere near that. This is all to say I am pretty aware of accessibility horror stories & I just want the best for everyone who has a medical need. I feel lucky every day celiac is fairly manageable. Thanks
23
u/BuffyFlag23 13h ago
Yeah, airlines in general haven't really figured out how to do GF well. I've generally gotten to the airport with enough time to eat a meal there before my flights, and carry snacks.
8
u/SekaiIchiapple Celiac 13h ago
Luckily we budgeted in the time! I’m just so bummed it seems they have no apologetic line even. Just rudeness & no availability
5
u/DangerousTurmeric 13h ago
I wouldn't trust the meals on a plane anyway. I've been lactose intolerant a long time and have been served numerous "vegan" meals with dairy and meat. I usually just bring nachos and guac with me now, and some dried fruit and chocolate. Also, unless you have a very short connection it's highly unlikely they will lose your luggage.
1
u/SekaiIchiapple Celiac 13h ago
That’s good to know. When I was young they lost our luggage on a direct flight to England (not sure what airline). It’s probably less common now 25 years later but I still get anxious about it.
3
u/DangerousTurmeric 13h ago
Yeah it's much better now that everything is computer based. I fly a lot and the only time my luggage didn't make it was when I had a 20 minute transfer and I barely made it myself. I don't even know how they can lose luggage on a direct flight ha
2
u/SekaiIchiapple Celiac 13h ago
Omg that makes sense. Maybe I’ll try it one of these days hahah I just have only flown like 6 times since 2018 so I’m still getting used to the idea things have changed.
1
u/twoisnumberone 12h ago
I second that; OP, check the meal's elements that are packaged and have ingredients. I got a wheat-filled chocolate courtesy of United (but I did check, knowing corporate callousness, and wasn't glutened).
1
u/twoisnumberone 12h ago
United is particularly brutal to disabled people among major airlines; once you're in Europe, try to fly Lufthansa...although I admit my disability then was visible; I was on crutches, and they got me a wheelchair and a free transfer to an entirely different flight the same evening (on one of the cheap-o city hopper routes, so no rebooking allowed usually).
11
u/elliebow713 13h ago
I have never heard of anyone being able to bring extra luggage just for food? And yeah, meals are never guaranteed. Every time I fly I have never ever bothered to request a gf meal, I always pack my own food
2
u/SekaiIchiapple Celiac 13h ago
I’ve heard a small bag? But not sure of specific airline. I think it would be a similar request to bringing an extra bag for a medical device. It’s good to know you never request a GF meal. It seems like the majority of stories I’ve heard are that they don’t have it on the plane lol. Luckily I planned ahead it’s just frustrating
6
u/Foreign_Rock6264 12h ago
I don't have the info handy but in the US you are technically allowed an additional small bag to carry-on to accommodate medical issues or needs. It's a federal mandate in the US. A common example of this applies to mothers bringing formula and baby food (above the liquid/paste allowance) for infants. In theory if you brought medical paperwork or a doctor's note detailing your medical need for safe GF food signed by your doctor, that is what is technically needed to show "proof" that you require a medical allowance for the extra bag and/or food. (Likely still up to whoever is at TSA or the gate on whether they respect you following the rules / bringing paperwork. It's usually fine.)
The meals that you'll get on an international flight are "gluten friendly" because of shared / unknown kitchen areas and a good chance of cross contamination. Im sensitive and can't eat those meals but have never had a problem on an international flight requesting and getting one (although you need to let the airline know in advance.) Overall the US is very shitty for people with medical food restrictions. I haven't experienced this when outside of the US.
3
u/SekaiIchiapple Celiac 12h ago
Thank you, I knew I had heard about the small bag for medical necessity. I will try it next time (we fly to see family in Oregon early next year so it could be a good test run). It’s interesting that whoever is at TSA can just decide wether that federal mandate is going to accommodate you that day lol. I’d love to come with the mandate printed out to show them haha
1
u/Foreign_Rock6264 12h ago
Yeah I agree. I lost a peanut butter sandwich once (I fly rarely and this was years ago) and I looked into it in full back then because I was pretty upset at losing most of my meal I had planned. I've always kept extra snacks but come with more than enough food and snacks when I travel now and it's saved me from skipping meals more than once!
12
u/_lmmk_ Celiac 13h ago
Fellow celiac who flies United internationally about once a month. I’ve never been screwed by the gluten free meals. So long as you request one 72 hours in advance of your flight you should be good.
6
u/macshack3 Celiac 11h ago
Just to add an anecdotal counterpoint - I hardly fly United at all, but they didn’t have my gluten-free meals on either of my flights to and from Peru. They weren’t very nice about it either, on the way there I was told I needed to call to confirm (why have an online option at all if that’s the case). Of course, I called to confirm for my return flight, and still the meal wasn’t there.
5
u/SekaiIchiapple Celiac 13h ago
Wait this is amazing intel, thank you so much! I requested it a long ass time ago (maybe a month or more?) but did get confirmation today that it was requested so fingers crossed
3
u/OGShanti 12h ago
Sadly, all their GF meals are gross. I ALWAYS bring food with me for United long-haul flights.
1
u/SandwichFair538 12h ago
I made the mistake of not requesting on Lufthansa for a trip to Germany years ago because I just didn't know (I'm always stocked with snacks though.) Flight attendant was SO rude about it, but ended up giving me a GF meal that belonged to someone else because he was asleep lol. She also told me to make sure I requested in advance for my return trip.
1
u/The1hangingchad Celiac 3h ago
I used to fly to Europe monthly. Even in Polaris, they missed my meal a few times. I got used to traveling with Kind bars, trail mix, etc. and considered the GF meal a bonus if it was on the plane.
Never thought the meals were that bad compared to airplane food in general. There's usually something from Udi's - bread, muffin, etc.
12
u/Human-Discount 13h ago
OP, you should be able to bring a 3rd small bag without issue. I've flown international with 3 bags and was never questioned. I used a separate medical bag, got a doctors note specifying medical necessity, and if anyone asks says its "medical items" you need to keep on your person, nothing more. Also, you can get a sunflower lanyard which is supposed to be known as a "invisible disability" alert for tsa/airlines.
I also brought tsa approved gel ice packs for my food and no one complained/questioned me or looked through my bags.
Have a fun trip!
3
u/SekaiIchiapple Celiac 12h ago
Interesting! When I called about the small 3rd bag they said it wasn’t possible. Maybe next time I’ll just bring it anyway (with a note of course). It would just suck to have to get it taken away since gf food is so $$. I’ve heard of the lanyard but wasn’t sure how that factors in.
I did buy a tsa approved tupperware that included a gel ice pack but it didn’t fit into my carry on so I decided not to bring it :/
Thank you for your help!
3
u/Human-Discount 11h ago
Interesting, I've flown internationally with them with my 3rd bag no issue. Idk if I can link it but i used the Medmax insulin/epi pen cooler bag (10x7.5x4in) from Amazon.
3
u/MooncakeBlossom 11h ago
Yes my partner travels with a third bag holding his CPAP nobody has ever complained
1
u/SekaiIchiapple Celiac 10h ago
Two carry ons and a med bag? Bc I have one roller bag & a backpack already
2
u/Human-Discount 9h ago
Yes, I have 1 hard roller for the overhead, 1 personal backpack for under the seat, and my medical bag. I also had a small fanny pack for pulling out my passport/documents while onboarding and they didn't care about it either (I put this in my backpack once boarded).
3
u/DirectAccountant3253 12h ago
I went up to the agent at the gate to confirm my GF meal. She walked down the jetbridge to talk to the peope on board. She came back 5 minutes later and confirmed my meal was there. At mealtime they came around and said there was no meal request for gf meal therefore no meal for me. They just gave me a blank stare and said sorry no meal. So don't trust them and if you are worried about cross contamination then bring your own food.
2
u/MooncakeBlossom 11h ago
Yup United is terrible about remembering the GF meal selection. I recommend assuming you have to pack all your own food. That said, vent away OP! You have the right to be frustrated.
1
u/SekaiIchiapple Celiac 10h ago
Thank you!! It’s interesting because I’ve heard good & bad things about United having the meal. My guess is it depends on the airport ? I guess we’ll see
1
u/SekaiIchiapple Celiac 10h ago
Ugh I’m so sorry! That would gut me
1
u/DirectAccountant3253 9h ago
I was really annoyed but there was nothing I could do about it. I had a job where I flew every week for 20 years so I'm used to airlines not giving a hoot about anything.
4
u/0rangesAndLemons 10h ago
Youll be fine in Scotland though dont worry! Where are you going? Dont let United ruin your trip
Our labelling laws are super good you can eat anything from any shop as long as it doesnt say "Wheat, Barley, Oats or Rye" in Bold or Underline, and doesnt have a "may contain" statement for one of those. Even if something doesnt say gluten free its 100% fine as long as it meets above requirements
1
u/SekaiIchiapple Celiac 10h ago
Thank you so much! We’re doing Edinburgh, Aberdeen, Inverness, & Glasgow. Then one day trip to Isle of Skye & Loch Ness from Inverness. I’m most nervous about that but I did look up a few places where it says we’ll be stopping for meals and there’s a good chance I could get something. If you have any recommendations, let me know!
1
u/0rangesAndLemons 8h ago
Are you driving for most of your trip between places, as part of a tour the whole time or using public transport? I would give you reccomendations for things to do in Aberdeenshire because thats where Im from but it depends on if youll have your own car or not.
How long are you in each place for?
Aberdeen- Biocafe for gluten free (and vegan because its a vegan place) savouries and sweets. Its my favourite cafe overall Ive been to. A couple Italians have gluten free menus- Amarone, Mi Amore. I like Amarone. Ive heard Siam Cottage is good for gluten free Thai. There seems to be a lot of choice so it just depends what youre thinking but "Gluten Free Aberdeen" brings up a lot of restaurants. (Im guilty of getting a takeaway instead of going out when I want to spend out on food so Im not the best source for restaurants)
When I was in London actually I went to this chain called Pho and really liked it, the menu is 98% gluten free and they have restaurants in Glasgow and Edinburgh so if youre into that theres an option I know about. For Edinburgh its like one of the best cities for GF in the UK if not Europe so you genuinely wont have a problem. I like Mammas Pizza Grassmarket, and theres a bakery called Sugar Daddies thats gluten free. It doesnt really matter about gluten for this one but I really like investing (i say that because its expensive) in a hot chocolate from Knoops when I visit Edinburgh its so rich but imo worth it. Glasgow and Edinburgh also have burger places called Bread Meets Bread which are nice. I dont have super detailed reccomendations because I tend to go to the same places when I visit edinburgh to get my pizza fix and maybe you want to try things you cant get back home but I genuinely dont think youll have an issue with any of the cities youre visiting.
In all the cities you can also buy gluten free sandwiches from our small supermarkets that are scattered around like Sainsburys, Tescos, (maybe Co-op cant remember) and M&S so you wont be stuck. If youre out and about outside of cities a lot of towns and villages have a Co-Op or Scotmid that usually have gluten free bread and sandwich meats, cheese, you could buy if you need quick food but all the snacks too have such clear labelling you wont be stuck unsure if you can eat things or not.
Im not really sure about Skye but I remember there being Co-ops in at least Portree and another village I was passing by there so you definitely wont go hungry if worst comes to the worst you can buy snacks, fruit, gluten free bread. I loved Skye its probably my favourite place in Scotland but I havent been since pre-covid.
1
u/Mairwyn_ 4h ago
Edinburgh
The crepes at Tupiniquim are gf & amazing. It's this little food stand at the top of a park right near the university. Duck & Waffle also has a location in Edinburgh; it isn't open 24 hours like the London location but 10AM-10PM most days (I think a bit latter on the weekend).
In terms of unique grocery store items, I basically filled my return carryon with gf crumpets by Genius. I haven't seen the brand outside of the UK. https://geniusfood.com/en-gb/product/crumpets/ If you have access to a microwave or oven, M&S has a good gf sausage roll.
6
u/SouthernTrauma 13h ago edited 11h ago
I always travel with carryons only. Relax, you're not going to starve. Take some protein rich snacks in your "personal item," along with a freeze dried GF backpacking meal as a back up in case your GF meal isn't loaded. On your last day in Scotland, replenish your stock of snacks.
1
u/RobertMosesHater 13h ago
What do you recommend for freeze dried backpacking meals ?
2
u/SouthernTrauma 11h ago
I like Mountain House or Backpackers pantry. Not Michelin star level, but decent enough. Beans or legumes tend to work best, in my experience.
2
u/RobertMosesHater 10h ago
I’m not a picky eater at alllll. I literally can eat the blandest food. I just want calories at the end of the day haha. Thank you !
3
u/LawyerDry8360 13h ago
This is airlines in general. research the airport ahead of time, eat close to landing and take snacks and things that are easy to transport.
3
u/Marsandtherealgirl Celiac 13h ago
That’s just kind of how it is. I’ve gotten really good at packing my food.
1
u/SekaiIchiapple Celiac 13h ago
Do you ever bring actual meals or just snacks? I’m so interested in what people bring
1
u/Marsandtherealgirl Celiac 12h ago
I usually bring stuff like beef jerky, crackers, dried fruit, snack pack cheeses, cookies, stuff that is kind of flat lol
1
3
u/waterproof_diver Celiac 13h ago
What drives me crazy about the gluten free meal is that it often involves fish. Why?? So many things are gluten free. There are infinite meal possibilities, and yet, they think I want fish on a plane. Same for hospitals.
3
u/unreasonable_citron 12h ago
Flying is always an experience. My first big flight post diagnosis, I was naive and I didn’t pack any food or snacks. I cried from hunger on one of my layovers, watching everyone else eat a burger.
Now, I always pack at least one full meal—sometimes I don’t eat it during the air travel even, but when I land and can’t find anything to eat if it’s a small area or weird hour. I recommend finding a nice thermos lol.
Plus, snacks.
Also, I have some big international travel coming up, and my doctor provided me with a letter for medically-necessary food, which might help in the future with getting an extra bag on the plane.
Good luck, it gets better.
2
2
u/kellymig Celiac 12h ago
I always check my bags, been lucky so far 🤞🏻. I e not flown united but I do pretty well with AA and BA. Just try and keep your wits about you, pay attention to the meal they serve you, and put plenty of snacks in your carry-on. I’m presently on a celiac cruise and they make everything wonderfully safe. Best of luck to you and I hope you have a wonderful trip!!! ❤️
2
3
u/UnitedAd683 8h ago
A celiac diagnosis is, in the U.S. , a disability and covered by the ADA. A disability in that it has significant impact on your day to day life. Get your diagnosis documents and your cooler of food is a medical necessity and covered.
2
u/ahabneck 8h ago
Checking in to say I ate a gf labeled chicken wrap that was NOT gf! It was packed in Jersey City for EWR flights —- never again
2
u/SekaiIchiapple Celiac 7h ago
Uh oh lol I’m at Newark!
2
u/ahabneck 6h ago
Wandering the streets looking for a toilet after all of the whole of the uk closed for the night really sucked. Thank god for Witherspoons
United flight, btw
3
u/Fun_Natural_1808 6h ago
My son has celiac and we took a small soft freezer bag to keep some things cold and we brought a ton of snacks. We were traveling to India so we had to take a lot.
2
1
u/cargalmn 13h ago
Yeah, that's how it is now, sorry. We were on a 15 hour flight and the airline couldn't confirm meals for it ahead of time, either. We always bring backup meals for on the airplane!
(re carryon only, that's how we travel and we're gone for a month at a time! Check out the onebag subreddit, if you're interested)
1
u/SekaiIchiapple Celiac 13h ago
Oh man!! What did you end up bringing for the 15 hour flight? Lots of jerky?
I’m in r/onebag & keep promising myself next time I’ll actually do it, but I travel on planes infrequently so it doesn’t end up coming up often enough to be top of mind lol
2
u/cargalmn 13h ago
Haha, that's fair!
We bring the freeze dried camping meals and protein bars. Next time we'll also bring dried edamame but have to be sure it's eaten on the plane, depending on what country we're going to. Also, the dehydrated meals we have to watch the ingredients for! Some countries are very strict about meat and dairy. It's so tricky!
I'm sorry you were caught unaware. Flying is a bit of every person for themself, nowadays!
1
u/SekaiIchiapple Celiac 12h ago
Ooo I have camping meals and didn’t even think about that 😭😭 I was hoping to keep one for the way back as well
1
u/sbrt 12h ago
Sorry, travel is difficult. It helps me to remember that flying is a huge privilege and an amazing feat of technology. Moving hundreds of miles an hour *through the air* is amazing and doing it for a typical economy ticket fare is huge value - even if you get crammed into an economy seat. I am ok with the staff focusing on safety first and accommodating my unusual diet should come lower on their priority list. Flight attendants have a very difficult and stressful job and there are many factors out of their control. All I can ask is that they do their best given the circumstances.
Space on planes is extremely limited and managing passengers with extra baggage is too complicated. You can bring a lot of stuff on the plane with you: carry on bag (usually included), under the seat personal item (if it is a flexible bag, it can be quite large), plus everything that you can wear including things you stuff into your pockets.
Have a great trip!
1
u/RelativeCheesecake88 6h ago
If it’s your first trip abroad, how is it that you’re in the US but have been to Scotland before ???
1
u/Middle-Refuse-4218 5h ago
My friends that regularly travel to Europe pack their personal item bag with food. You get carry on and personal item.
When I travel domestically I pack a checked suitcase with food and a toaster. I travel with airlines that I have credit cards with that give free checked bag.
I would forget about trying to bring a cooler. All kinds of issues with TSA if your gel packs are melted or considered too much liquid etc. we usually use a “pack it” brand soft sided pouch that you can tuck in your tote/personal item.
29
u/dizzymatter96 13h ago
When I was pregnant on a United flight even though I requested a gf snack they sold out. One of the flight attendants told me he was a celiac too and he and the other flight attendants assembled snacks I could eat and didn’t charge me for it. For this reason I will always like United because their flight attendants were so caring to me. I know these companies don’t prioritize passengers but I’m hoping you can make it work and find some kindness.