Newbie, 2 Weeks into Stage 1 Diet; Advice for Europe Trip

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elbailey
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Newbie, 2 Weeks into Stage 1 Diet; Advice for Europe Trip

Post by elbailey »

Hi Everyone,

This is officially my first post to the discussion board. I am so glad and thankful to have found this group! I have been diligently reading and quietly following along, searching the archives for hours and trying to better educate myself about MC. I have been following following Stage 1 Diet for about two weeks and now have Mag spray and MC friendly D tablets and have poured through Tex's book (which has been so very helpful).

It has been a bumpy journey to say the least, but at least I feel like I better understand the trail I am on after reading this discussion board and Tex's book (ie, who knew all that loud gurgling was attributed to borborygmus; I have just been calling in the monster in my belly!).

A little background on my diagnosis, journey to date....

I first got diagnosed with CC in early February 2017. I have been having full-on symptoms since late fall 2016 that finally led me to the GI and diagnosis following a colonoscopy. I think I may have been gradually working up to the full-on symptoms for 5+ years as I would experience what I thought was just a stomach bug with D lingering for three to four weeks from the start and the number of these episodes seemed to increase over time.

After my diagnosis, I was given a two week supply of entocort that was wonderful (all norman) while it lasted but, as expected, symptoms immediately returned upon stopping. Of course, I was still following sort of an "IBS" diet that the doctor gave me in January so I was still full on eating lots of foods that I am probably sensitive to. In March, I experienced Bells Pallsey (temporary paralysis of half the face muscles), which is thought to potentially be another autoimmune triggered condition, so I had to go on prednisone for this symptom. Again, all MC symptoms went away while I was on prednisone but returned with a week or so of finishing up (again, I was still just trying to follow a typical IBS diet). My GI didn't want to extend my prescription to entocort given that I had just come off prednisone, so he suggested trying Pepto Bismol (single tab 3 times per day). I stopped taking the PB after a couple of weeks as I thought it may even be making my symptoms worse, but that was before I had fully started on the elimination diet. I am giving the PB treatment another chance now that I am on an elimination diet.

Now for my actual question....

I have many newbie questions, but I am going to start with the one that is keeping me up at night --

I have a work trip to Europe scheduled to occur at the end of the month (two weeks away). I have read the posts on traveling advice and tips on how to survive overseas, but I still need some additional advice to help me prepare for this overeas trip, particularly given that I am still in Stage 1 diet.


Since I am in Stage 1, I am still very much trying to learn different triggers (ie, I don't appear to tolerate chicken very well) and I have a pretty small list of foods that I keep coming back to as o.k. foods. These include:

Rice,
Plain Rice Chex
Rice Cakes
Bananas (I typically limit to one a day; I learned quickly that two can lead to cramps)
Salmon has been one of my go to meats that feels very good on the belly
Turkey
Lamb
Sweet Potatoes
Regular Potatoes
I did o.k. on broth make from left over roasted turkey carcass
very mushed, cooked carrots

Meats I am unsure of at this point are pork and beef. I tried a grass fed burger and that didn't go well but may have been the grease level. Pork did so, so but I was having issues still from chicken, so hard to say for sure.
I was not able to tolerate beef bone broth very well that I made when I first started the diet. I put this in the freezer to try later.

Can anyone provide some advice on survival foods that I can try to pack with me on my upcoming trip? I plan to try to the "to the Chef Card" for when we eat out, but figured I am going to need some survival foods to make it through as we will likely be in some places where there are just no good food options for me.

Given that I am still in Stage 1 and traveling abroad, any recommendations on what the heck I can pack for survival packs for the week long trip?

I was hoping I could take some canned salmon, but from what I gathered is that this may be an issue for bringing into Europe. I couldn't quite tell if the "no outside meat" policy would apply to canned salmon. Has anyone had any luck traveling with canned salmon?

Rice cakes and chex cereal would be o.k. but that is not a lot of calories. Would it be possible for me to try to introduce a nut butter this early on just so I can see if I can tolerate for the trip for some extra survival calories. If so, which would you recommend trying - almond or sunflower butter? I see both are available in individual packets.

Could I possible try plain potato chips, or give some Lara Bars a try? I figure I probably have time to "test" just a few different foods before I leave, so need to try to make some educated decisions. I wouldn't normally be trying to introduce any of these, but I feel like I need to test some snack food options to have some sort of survival food plan.

Any other advice on how I can best survive this trip?

Thanks in advance for your input.

- E
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Post by tex »

Hello E,

Welcome to our Internet family. I don't do any traveling these days, so I'll make a few suggestions on snacks, and other members here can answer your questions specific to traveling. Provided that you can tolerate corn, potatoes, etc., most of us are able to tolerate snack foods such as Corn Chips, Tortilla Chips, and Potato Chips, as long as they are cooked in a safe (non-soy or peanut) oil such as oil made from corn, sunflower, canola, safflower, etc.

You can probably even tolerate fried pork skins if you crave something crunchy, but I'm not promoting them as a healthful snack, I'm just saying they're probably safe. I don't know about traveling with them, but sometimes you can find pouches of salmon without any soy oil that are safe and handy. Nut butters in pouches may be OK, but most are not processed on dedicated machinery so you have to weigh the risks with them. They're usually safe.

If you need a mid-morning snack, try a pork chop (or lamb chop) that you can carry in a zip-lock bag. You can safely carry one for several hours without refrigeration after it's cooked. If you can tolerate eggs, a boiled egg (again, carried in a zip-lock bag) makes a good snack. If you cannot tolerate chicken eggs, you can surely tolerate duck eggs as a safe substitute. Eggs from anything other than a chicken are safe, such as turkey eggs.

Again, welcome aboard, and please feel free to ask anything.

Tex

P. S. As insurance for the trip, you can buy generic budesonide from an Indian pharmacy for pennies on the dollar without a prescription. https://www.alldaychemist.com/budez-cr.html It's as effective as the over-priced American stuff at a fraction of the price.
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by Erica P-G »

HI E,

If you haven't tried Minute Rice this may be an option for you on the plane. You can take it on dry in a freezer zip baggie and request Hot water perhaps from the stewardess and pour equals amounts of rice and water together into the cup and cover it back up and let it sit for 5 minutes and I bet it would soak into the rice well enough that it would be cooled enough to eat too. Bring along some sea salt in a small shaker (its not liquid :-)

Try it at home with a piping hot cup of water 4-8 oz and add exact rice to water measurement and see if you can get those results. If you can then you have a way to get around the 3oz liquid issue but a way to eat something hot and safe. You can add (Coconut Zing bar, or Lara bar, some chips of some kind - I like Frito type I buy the generic...and I have eaten those ever since the beginning of my MC, Minimal ingredients is the trick right now.) There is also turkey and beef jerky in portion packs check the ingredients I know Oberto has one specific one that I am able to have. I know sugar can be an issue for some but there are fairly safe hard candies, ones I tolerate are Hot Tamales and Hard Cinnamon disks - just an idea.

I think this is more than plenty to keep you going during a flight, and drink plenty of water and move around while in flight, rest too.... :wink:
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Post by Marcia K »

Hi, E. Travel can be a challenge, especially when you are so early on your LC journey. When I travel I take Epic Bison Bars, Oskri coconut bars, salmon in a pouch, Nutiva hemp protein powder that I mix in almond milk, squeeze pouches of applesauce (check ingredients) and organic squash baby food in a pouch. The jerky that Erica mentioned would be a good choice to take along in your pockets/purse when you'll be out & about and not sure where you'll be eating. When I fly I put as much as I can in a plastic container that I duct tape closed so it doesn't come open when the airlines staff is drop-kicking the luggage around. I hope you have a wonderful trip. Travel can be unnerving when you have this disease, but it is doable and I hope you will give us a report when you return.
Marcia
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Post by brandy »

Hi E.

Welcome to the forum! A European business trip is pretty strenuous for those newly diagnosed with an IBD which is what we have. Since you know that Entocort works for you and you did not get side effects consider ask your PCP for renewal or call GI nurse and tell her that you need a scrip for the European business trip. You could fill the scrip and have it as a back up plan, i.e. continue with the diet and pepto and have the Entocort as emergency backup plan.

Another option would be to try the cholestyramine regimen. This is prescription, non steroid, a step between the pepto and Entocort. If you try cholestyramine I would start it before going on the trip to make sure you can tolerate it.

Bring all of the pepto you need for the week. I believe in some of the countries it is tougher to find.

I've done all three (not at same time)--Entocort, cholestyramine and pepto.

Ultimately it is diet changes that heal us....the prescription drugs help with the symptoms.

Most flights to Europe from the east coast are the overnight ones. Typically I bring food to eat in my car before I get to the airport.
I find it fairly difficult to eat in the coach/economy seats as you don't get much room so I try to eat my foods in layover airports. I have not done a European flight since I've been diagnosed but if I did I would eat meal in the parking lot of my little airport. I would take commuter flight to Atlanta/Miami, Philly or JFK for layover to catch international flight. During layover in airport I would eat second meal as more room to spread out than on plane. Then I would get on plane in evening for international flight, try to sleep and eat food I brought for breakfast.

I generally bring a lot of protein precut into bite size pieces (as no room to cut meat on plane.) I bring bananas. I bring the paleo muffins that are listed in the first page of "Dees Kitchen" in our recipe thread. I bake them in mini tins and over bake them a bit. I find the mini size works best for airlines and overbaking helps to hole them together. I've eaten tuna or salmon sleeves in airports. I prefer the smaller size sleeves that you can buy at health food stores. I've never eaten the tuna or salmon on plane due to the smell issue. I bring a couple of bars of 85% gluten and soy free Lindt dark chocolate.

Protein is the key thing that I focus on. I've tried three methods for storing the protein. Most of the time I use Tex's method.....bring the cooked meat and eat in 3-4 hours. Second method I've used for protein is freeze in advance and bring. The meat will slowly thaw and still be cool at about the 6 hour point. Third method I've used I learned from Jari.
I brought the cooler bag that Jari recommended. Put small amount of ice in ziplock and used that to chill meats. Brought extra empty ziplocks. I went through security no problem with this method. Jari's philosophy was if TSA had problem with the ice you can ditch it at security and then get new ice from a bar or restaurant on the other side of the security line. I think this is a sound strategy. Usually I use the first method as I'm taking shorter domestic flights.

Drink a lot of fluids day of flight.

I'd try to google map your hotel in advance and locate nearby grocery stores. Generally in Europe groceries will be in easy walking distance. Another option would be to email concierge/front desk to get address of grocery so you can google map in advance. First day I'd pick up bananas, avacados (if you can tolerate), tuna, salmon, sardines rice cakes etc. Test sardines in US before you go. I used this strategy working in Cleveland for two weeks. Every morning in my hotel I would eat tuna, a banana and avacado for breakfast. I found a good breakfast really helps with the workday.

Check to see if your country/city has uber in advance. If so load uber app on your cell phone. Check with your cell phone provider to see what charges are to run uber ap. If you have to travel to get groceries, i.e. too far to walk uber works great and has a great reputation in Europe. Language issues go away, no cash handling etc.

Google your city to see if it has a gluten free bakery. A lot of times the gluten free bakeries will also offer meals.

I traveled with Mom (celiac) in Europe prior to me getting MC. GF Restaurant dining is much easier in Europe than in the southern part of the US. Europeans eat fresher foods and foods in season compared to what is served in restaurants in the US particularly in the south. The European waiters/servers seemed much better trained about celiac than what you get from servers in the US who always seem to be just going through the motions. The European restaurants seemed to take gluten sensitivity very seriously whereas in the US it seems to be a marketing fad.

It is no problem buying potato chips cooked in olive oil (these are common), gluten free bread sticks, gf crackers etc in europe. Scharr brand that is sold in the US is made in Europe and shipped to the US for sale. Some of the other brands that are sold in the US are manufactured in Europe and shipped to the US.

For your flight home I'd try to get your hotel restaurant or a local restaurant to make you a turkey or lamb rice bowl that you can eat on the flight home.
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Post by elbailey »

Thanks so much for all the very helpful replies.

I hadn't even thought about minute rice, so I went out and got some to experiment with to see if the hot water strategy would work on the plane or later in the hotels.

Does anyone have a recommended salmon in the pouch that doesn't contain soy? I've looked and can only find canned salmon that doesn't contain added soy, but no luck yet for salmon.

I will try to experiment with a few of the snack bars and chips mentioned above and see what I can tolerate.

Thanks!

- E (aka Erika)
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Post by brandy »

Erika,

Bumble Bea premium wild pink salmon pouches are at most grocery stores.

For travel I prefer the pouches that you can get at health food store as they are smaller sizes (different brands)

Ignore my comments about chocolate. I think it is too soon for you to try that.

I think you and I were cross posting. See my post right above yours in case you missed it.
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Post by Gabes-Apg »

Erika
welcome!

you have been given lots of good suggestions above,
The Scharr brand mentioned by Brandy above is readily available in Europe (and is also here in Aus) thus far my experience with that brand is that most products contain soy (unless they have changes ingredients since I last checked) in saying that I would avoid items with processed flours/multiple ingredients.
Stick with single ingredient type things - rice pouches, potato chips etc and focus on finding good serves of safe proteins. use the chef card and get good serves of proteins breakfast, lunch and dinner. and use things like the hemp protein as the fall back if you can not source safe protein

other suggestions -
- there are tablets that you buy in the USA that will help protect against Gluten and Dairy contamination
- increase Vit D3 and topical magnesium use to help body cope with stress of travelling etc
- drink LOTS of water on the flight and eat minimal amounts.
- see if there are health food type stores near where you are staying working (I did this when I went to france 6 years ago) they had very reliable stocks of safe ingredients back then (gluten free travel sites are good resources for this info)
- rather than overload luggage with safe items, order them online and have them delivered to your hotel or workplace over there. When my trip to France got extended I did this, ordered safe items online and got them delivered to work.
- have stocks of your safe meals in the freezer for when you return home, the combo of travelling, adrenalin etc your body will need some extra nurturing when you return home.
- ask for a gluten and dairy free meal for your flight and ask the travel agent to make notation on your itinerary - "special diet request noted but is not guaranteed" this along with letter from your doctor (or practitioner) stating you have medical condition with multiple food intolerances is your 'gold pass' to carry food and drink items with you.
- set up audio tracks / guided meditation / relaxation tracks etc onto your device, relax as much as possible on the flight / in transit. when you are relaxed you wont need as much food.
- have good serves of protein in the meals before you depart (even in the car at the airport before you check in) and then plan to sleep on the flight, this reduces the need to carry lots of food items with you.

hope this helps
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Post by Erica P-G »

Also Erika, if you can tolerate plain Skip Jack Tuna they are in cans, soy free, in just their own juices, and you can have salt or no salt kinds. They are spendy per can (I get them at Walmart almost $4 a can around $3.44 perhaps) but well worth it, and they taste great. Plus they have pull lids so no can opener needed.

I know this doesn't help the 3oz liquid idea...but there isn't really much of any liquid in those cans, it would just have to get scanned, it is mostly tuna in there.

Cheers
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Post by Patricia »

Hi Erika,

I am chiming in here a bit late, but better late than never....I grew up in Switzerland and moved to the US twenty years ago when my husband got transferred for his job. All of my family and his family is still in Switzerland. I was diagnosed 2.5 years ago and during this time my Dad has had a lot of health issues, so I traveled to Switzerland and back more often than usual. I live near Pittsburgh and I can either drive to Washington DC to take the night flight to Zurich or I can fly out of Pittsburgh and change airplanes in DC or Newark. Timewise, it comes to the same. Either way I have to leave my home around 11 AM and I only land in Zurich the next morning. I usually fly United because they are the only airline with a direct flight between DC and Zurich and because I have their credit card and accumulate miles for free flights with them, but I think the other airlines aren't that different when it comes to food. I am entered as gluten free in the United system and whenever I book a flight with them, I automatically get a gluten free meal. But honestly, I really can't count on any safe item in that meal. The "main course" always has some kind of a sauce on it, which to me just looks like soy written all over it. Soy is probably my worst offender, and I am certainly not willing to take any chances while in the air. Then there is a salad, but I am still not at the salad stage. There might be some rice cakes, but more often than not they are not in the original package, just two rice cakes wrapped in saran wrap. Again, that's too risky for me, who knows what the ingredients are? I don't think they should serve any diet food that is not in the original package. The dessert is often a fruit (but I pretty much only eat bananas and very often it's an apple or a fruit salad) or a chocolate (containing soy!). One time, dessert was a single serve applesauce, in its sealed package, with the ingredients listed on it, with no added sugar, and that I ate and was fine with it. But I can really not count on the meal. For breakfast, most often they bring the saran wrapped rice cakes again that I won't touch. I feel bad if they bring me a special meal and I won't touch it, but at the same time, I really do not want to risk anything while traveling. So here is what I always do. I cook myself a safe meal before I leave my house and use a plastic tupperware-like container. At home, I bring glass containers to restaurants, but I don't dare do that for a flight. What if they decide I could break it and use it as a weapon. So I take a good size plastic container and put in enough food for lunch and dinner. I put cooked rice or potatoes on the bottom, on top of it I put meat already cut into pieces so I won't have to cut it at an airport or in the airplane, and some well cooked veggies. I have never bothered to cool it with ice and I have been fine each time. I just make sure the meat is cooked really well (more than how I would cook it at home). I eat half of it at lunch time and the other half of it at dinner time. If I have time to eat it at the airport before boarding the night flight, I will. It's easier to eat there with more space available and I get more sleep on the airplane. If I don't have enough time, I will eat it on the airplane. Sometimes, people will give me a weird look when I pack out my dinner on the airplane, but hey, who cares! They are not the ones who have an IBD! I also pack my own rice cakes, and potato chips (I get them from a health store nearby, they are made with avocado oil and I tolerate them without any problems). I either take a banana from home or buy one at a Starbucks in an airport. At home, I have one banana for breakfast and one for dinner, so I do the same thing while traveling. For breakfast in the airplane I have rice cakes and my banana (at home I have hot rice with banana slices and cinnamon).
Traveling back from Europe I do the same thing (pack enough for lunch and dinner). But I make sure to eat all of the meat and all of the veggies and the banana before landing in the US since I am not allowed to bring any plant, fruits, vegetables, or animal-based food into the country. Customs has asked me before what food I had and sometimes wanted to look at it. If they see a half empty tupperware with only rice left, they are totally fine with it. As for TSA, I have never brought a letter or any document, and so far, I have never had a problem. I just put the bag with the food onto the belt, and that's it. I have a tiny bottle of safe and pure olive oil in it, and they have never even looked at that either.
The only time I got questioned was over Thanksgiving one year. My husband, my three daughters, and I rented a sailboat in the British Virgin Islands for a week and went sailing. I cooked myself safe food on the sailboat (I have to say the selection in the stores was extremely limited). The morning before flying home I cooked myself lunch and dinner, which consisted of rice and a white fish (because there wasn't much else). I had an entire bag of food for my daughters as well (they are all strictly gluten free, one is vegan, the other two mostly dairy free). Before taking the ferry from the British Virgin Islands to St. Thomas from where we would fly back, we had to go through TSA. I put everything on the belt and they asked me what was in the bag. I told them it was all gluten free food. They then wanted to see my tupperware. Being on an island, and taking a ferry, it had actually not occurred to me, that I was officially entering the US with animal-based food, my fish! They immediately asked me what was on top of that rice. I said it is cod or whatever it was, and explained politely that I had a ton of allergies and that this tupperware was going to be my only food until my late night arrival in Pittsburgh. It was still morning at the time. They kind of looked at each other, looked at the tupperware again, and finally said, okay, you are good to go. Honestly, had they said anything else, I would have eaten the cod off the top of the rice right then and there so I would have my protein for the day, and they have no reason for not allowing me to take my rice with me. But in the continental US, no TSA agent ever asked me to open up the tupperware.
I don't know if you like sushi or not. I love sushi and always have. I found that traveling in the States or in Europe, going to a sushi restaurant is the safest thing I can do with all my allergies and it's the easiest. I don't feel weird, I don't have to explain to anybody what I can or can't have. I always order tuna sashimi and a bowl of white rice. And that's what I get: pure tuna without any sauce, and white rice. And every sushi restaurant carries that. One warning, though. Sushi rice usually contains a tiny amount of rice vinegar, salt, and sugar. But it has never bothered me.
I was just in Switzerland in March to celebrate my Dad's 89th birthday with him. My sister invited my parents and me to a hotel for a weekend. Honestly, I was very, very worried about being in a hotel and the eating part. I worried about being sick the following day when flying home to the States. My sister and I emailed back and forth with them in advance of the trip and they could not have been nicer about it. I only got safe food during that weekend. I am sure the cooks thought it was super boring, no sauces, no decorations, no fancy combination of ingredients, well cooked veggies instead of al dente, but everything they served me was exactly how it was supposed to be for me.

Good luck on your trip and let me know if you have any other questions!

Love, Patricia
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Post by Marcia K »

Brandy, I was carrying the Bumble Bee wild pink salmon with me when I travel but now they added vegetable broth to it and it turns my stomach. Do you think the broth contains soy? It's upsetting that they ruined the taste of something that was so good before they messed with it. I am so in awe of all of you for taking the time to write so much helpful information to help a new member. You are awesome!
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Post by elbailey »

Patricia,

Thanks so much for all your detailed advice. I am truly humbled with how helpful everyone has been. I feel much calmer about the prospects of this trip. I even tried going out to eat this last weekend for our anniversary and tried out the "To the Chef Card" so I could see how that worked out. The waitress was very complimentary of how helpful the card was. She took it to the chef and came back with several safe choices from the menu.

Marcia - I notice too that the Bumble Bee has vegetable broth which I was worried would contain soy, so I am sticking with my Trader Joe can of salmon for the airport layover.

Cheers and I will touch base after the trip to let you know how things work out.

Erika
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Post by elbailey »

Patricia,

Thanks so much for all your detailed advice. I am truly humbled with how helpful everyone has been. I feel much calmer about the prospects of this trip. I even tried going out to eat this last weekend for our anniversary and tried out the "To the Chef Card" so I could see how that worked out. The waitress was very complimentary of how helpful the card was. She took it to the chef and came back with several safe choices from the menu.

Marcia - I notice too that the Bumble Bee has vegetable broth which I was worried would contain soy, so I am sticking with my Trader Joe can of salmon for the airport layover.

Cheers and I will touch base after the trip to let you know how things work out.

Erika
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Post by elbailey »

One more question for the trip. My doctor did call in a prescription for me for a type of budesonide. It is a 60 day supply at 9 mg each. I have been improving and seem to be doing relatively well on the stage one diet currently (fingers crossed as it seems that can change at the drop of a dime). Any thoughts on if I am best to just bring along the prescription just in case I run into issues during the trip or if I would be better to go ahead and start before the trip? I haven't read up on the different strategies for stretching out the prescription or weaning off slowly but I will need to plan this out as well.

Thanks!

Erika
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Post by Gabes-Apg »

so far as getting the script filled, you may want to check with your insurance as to how much they will cover, ie what your deductable will be for the budesonide. if it will be super expensive and you don't think you will need it then it would be a waste to spend excessive dollars on a back up.

if the stage one diet is working not too badly, then you may find that a few immodium will be enough to help you should something happen whilst you are in transit etc...
Gabes Ryan

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