…in the land of Milk and Cheese.
[note: this post was originally written back in September of 2011, not sure why, but I just never posted it... till now. I'll try to eventually get the following posts to the series written up and posted as well]
I never expected to find myself traveling as much as I have been in the last 2 years, and especially not with severe food allergies and celiac disease. But, I can tell you, it is possible to do it… it’s not easy, but it is possible… even on relatively short notice.
I just spent 10 days in The Land of Milk and Cheese, aka, France. And I am happy and relieved to tell you that I’m still alive, and didn’t use the EpiPen on this trip. It wasn’t lacking in adventure though! I had less than 2 weeks warning I was actually going to go on this trip, and the thing that loomed in my mind was that I was going for my cousin’s wedding. And if you don’t know about French culture, well, food is central, and not just that but it lasts for hours! And I’m not kidding. But
I was honestly quite surprised at how much allergy friendly food I found there! We found some gluten free stuff at a Bio coop store, not expecting to find that kind of stuff in a regular grocery store. But surprise surprise! We found a whole isle of diet stuff in Auchan! Not the complete isle was safe for me, but I was still surprised at how much there was in that isle, and throughout the rest of the store.
And then there was finding “MC safe” stuff in my grandmother’s kitchen. That was interesting. But it wasn’t anywhere as bad as dealing with the wedding. So, over the next week(s) I’ll share some tips I learned from this experience, and some things that did and didn’t work for me.
1. Surviving a trans-Atlantic flight. I’ll cover this better later. For now, let’s just say, pack your own food, and be super careful. I had no problems on either flight, though on the way back I had an interesting dialogue with one of the flight attendants. I had brought my own food but forgot to bring some kind of utensil. Fortunately they had plastic-ware that was in a sealed bag. They also were serving water bottles with lunch. I was nearly served a meal that would have required the EpiPen in-flight, and quickly told the flight attendant that I have severe food allergies, and asked if I could just have a bottle of water and packet of sealed plastic silverware. She didn’t understand at first what I wanted, though I thought it was simple. I asked her again explaining again that I have severe food allergies and brought my own food. She then told me, “well, I don’t know what I can give you… I could give you a packet of butter.” “um, I’m allergic to all dairy products.” “oh. Umm…” And then she understood I just needed the sealed silverware and water. After that they remembered better that I couldn’t have the airplane food, and she was the one who kept another flight attendant from nearly serving me pizza loaded with cheese!
2. Jet-lag. NEVER EVER EVER try to read ingredient labels while dealing with jet-lag, especially if you’re not familiar with reading them in a different language. I’m fluent in oral French as I’ve grown up speaking it, but I’m not as great with reading it. I’m getting a lot better at it though. However, ingredient labels in Europe look a lot different than in the US. Some over in France are just in French. Others are in 2 or 3 languages. And still others seem to be in nearly every language under the sun! Finding either the French or English section on those products was quite a challenge! Oh yeah, and some of them were in tiny print, so you might need to bring a magnifying glass with you!
But here’s my reason for why you should NEVER read ingredient labels while jet-lagged: We thought we had found a safe soy-milk. It even tasted decent. Except that I didn’t feel right afterwards. I wasn’t sure what it was from. It took 2 days for me to figure out it was the soy-milk. I re-read the ingredient list and saw one of my most hated ingredients listed: maltodextrin. I never really know if this comes from gluten, corn, or some other source, and it wasn’t explicitly stated on the label. But laying on the couch curled up in a ball for 2 hours after drinking the soy-milk made it pretty clear that there was something in the soy-milk that was not safe. Thankfully the reaction wasn’t too bad, and only lasted 2-3 hours each time.
3. When in doubt, leave it out.
You’ve probably heard this saying before, and I live by it a lot. If something isn’t clearly indicated, then put it back on the shelf and look for something else.
4. READ INGREDIENT LABELS CAREFULLY!!
When we were in the Bio coop store I saw a package of supposedly “guaranteed gluten free” musuli. Curious, I picked it up and read the ingredient label. The first one had banana in it, which I’m allergic to, so I put it down pretty quickly with a sigh. I spotted another one next to it. Hoping it didn’t have banana I read the ingredient list… only to find that it had rye in it. HUH!?? A product that claims to be guaranteed to be gluten free and has rye in it, and any celiac should know that rye=gluten. The person working in the store insisted that it was gluten free, but I wasn’t going to believe her. I know that Europe has a “low gluten” thing that I still am getting confused between the “no gluten” thing, but um, since when was rye not gluten??
5. Have your own towel set aside.
I do this allll the time at home, and naturally, I do it when I go somewhere else. If you live in a house where other people eat your allergens, then I’d recommend using a separate towel. People don’t realize when they’ve just eaten glutenous bread, or even cheese or butter or who-knows-what-else, then instead of washing their hands, they just wipe them on the kitchen towel. So, in my house, I usually use paper towels, unless I’m baking, then I’ll keep a towel out in the dish rack for me to use where everyone else knows it is only to be touched with clean hands.
Finding a place to put such a towel in my grandmother’s kitchen though was a bit of a challenge. In the end, her solution was to put some wax paper up on top of a small shelving unit, and I kept a separate towel up there. When it got too wet to really dry efficiently, I’d switch it out for a new clean and dry towel. I would have rather had the towel hanging somewhere so it could dry better, but really, there was NO safe place to hang the towel where other people wouldn’t mistake it for the “normal” towel, nor where it wasn’t going to be in close proximity with gluten and/or dairy.
6. Be prepared.
Do your research before going. I had less than 2 weeks, and in reality, the prep time was way less than that because I spent most of those 2 weeks doing homework so I could get ahead in order for my profs to let me go on the trip. But, thankfully I’ve been to France before (before I found myself with food allergies and celiac disease) as I have family there and I also am fluent in French so I could read labels there easily and was familiar with how to explain to people about things related to food and my allergies.
7. Bring your meds.
Bring all of them, and extra EpiPens. Any other med you might need. I got 2 extra EpiPens before the trip, which brought the total of EpiPens I have to 5. I’m not sure about whether or not they should go through the x-ray machine at airport security as EpiPen has a warning about it on their website. But after asking around everyone I heard from said that they all have it go through the x-ray, I decided to keep doing it too. The EpiPen my friend used to save my life just over 2 months ago worked fine despite having gone through I-have-no-idea-how-many x-ray scanners. Probably around 10-20 times… If you have a different perspective, let me know! I’m still not sure what to think and haven’t yet gotten the chance to remember to ask my doctors about it.
I’ve never had a problem with my EpiPens and airport security. If they’ve had a hesitation about what this thing is going through the metal detector in the US, as soon as they’ve seen what they are, they just let them go through. In Belgium though the security guy took a good long look at them before deciding they were fine and didn’t need to be further inspected (I think it’s that they’re not used to seeing that brand of epinephrine as it’s usually seen in the US and Canada only). But had there been a problem, I had a letter from my doctor giving me “official” permission to carry EpiPens and self-administer them in case of anaphylaxis.
All in all, it IS possible to travel safely with severe food allergies and celiac disease. But it isn’t easy. I have plenty more to share about this trip food-wise, so be on the look-out for more follow-up posts here! Aside from the issue with the soy-milk for the first 2 days, I was pretty much fine the whole trip.
It all started when my sister came to me saying she needed an ugly Christmas hat for her art class this week. We did a web search for ideas and stumbled across a Rudolph hat made using gloves for the antlers. A search in the coat closest revealed a pair of old blue gloves I don’t wear any more and a purple knitted hat my sister never wears. We grabbed the box of craft pom-poms and found a needle and thread and some stuffing.
I went downstairs to grab something and when I came back up I heard this automatic voice saying “place black end on outer thigh and press and hold for 5 seconds… *click* 5…4…3…2..1… Injection complete… This trainer can be reused…” Yup. My sister had found a trainer Auvi-Q on my floor (haven’t quite fully unpacked from the Teen Summit last month) and was “injecting” poor Rudolph.
We concluded that Rudolph must have rubbed his antlers on an almond tree, thus his antlers started to swell and turn blue, he broke out in hives (we added little red pom-poms) and then struggled to breathe so he turned purple. I started singing,
“Rudolph the red nosed reindeer, rubbed against an almond tree,
He started to break out in hives, and then he struggled to breathe…”
We were laughing as we worked and sang till all of a sudden my sister asked me,
“Why didn’t Rudolph get better when I injected him with the Auvi-Q (she used a trainer but pretended it was the real thing)? He’s still really purple.”
Folks, THIS is why I have the motto:
“Don’t wait till it’s too late: anaphylaxis doesn’t discriminate”
I explained to her that if you don’t use epinephrine fast enough then after you reach a certain point it is too late and doesn’t help. The sooner you use your EpiPen or Auvi-Q the better chances you have of staying alive.
Let me rephrase that. Yes, I know it can be scary and sometimes we don’t want to think about it. But yes, if you delay epinephrine, you are greatly increasing your chances of dying.
I know the excuses.
“But am I really bad *enough* to use the epinephrine?”
“If I use it then people are going to think I’m over reacting”
“I don’t want to be an inconvenience”
“Are the EMTs, doctors and nurses going to believe me?”
FORGET WHAT OTHERS MIGHT THINK!!! Just use the epinephrine and you can deal with the responses of those around you later when your body has stopped trying to kill itself! (And I’m preaching to the choir here)
So, let’s not be like Rudolph who rubbed up against an almond tree and then turned purple because he couldn’t breathe.
USE YOU EPIPEN/AUVI-Q BEFORE YOU GET TO THAT POINT!!!!!!!!!!!
If you’ve read a good part of this blog you’d know that I have a younger sister known as Chef Flower and she is a student in Chef Froggie’s Gluten Free Culinary School. Well, the culinary school has been on a long break, but Chef Flower has still been learning. We come back to bring you a new post from the school, one where we especially needed Chef Flower’s help for. A product review.
Part of being a student at the culinary school involves not only learning baking stuff, but learning how to write stuff about what you bake and cook and taste. A few months back someone from Enjoy Life Foods contacted me asking if I’d like to try their new Decadent Bars and write a review on them. I told them that sadly, I’m allergic to one of the ingredients in them, but that my sister isn’t and she would be glad to try them. A week or so later I received this package and Chef Flower excitedly brought it to me and asked if she could open it. “Well actually, yes, you can open it because it’s actually for you.” She was more than thrilled and surprised and couldn’t wait to try the bars.
Unfortunately, she was sick at the time, so I didn’t let her try them till her taste buds were working normally again. And then our mom heard about the bars and insisted she wanted to try them as well. So, both tasted them, analyzing them, thinking about how to word the feelings coming from their taste buds, and then writing them up. Things have been crazy around here and I’ve had 1/2 of the text on one computer and the other half on another till today. So, without further introduction, I present you with Chef Flower’s analysis!
It tastes like cherry pie with cinnamon. Though, after you let it sit in your mouth, you feel a grainy texture, kind of what gluten free pies taste like. [Chef Froggie’s note: not all gluten free pies taste like this… just she hasn’t had the really, really amazing crusts apparently… guess I’d better work on that!] Not does it just taste like cherry pie, but it smells like cherry pie! It does taste good but it’s not my favorite.
I am not that fond of chocolate [Chef Froggie’s note: that was till a week after she wrote this, now she has fallen in love with chocolate unexpectedly], but this chocolate sunbutter bar is the best chocolate bar I have ever had! With the taste of sunbutter I also am not fond of peanut butter or sunbutter, but in this case, its delicious! With a nice and crispy taste!
Even though I am not fond of chocolate, I love S’mores. And even more, what is even better is Enjoy Life S’more bars. I like the chocolate taste with the crunchy graham cracker taste, though I don’t taste the marshmallow that much. I compared this to the Quaker brand that had artificial ingredients in it. I did not like it as much as the Enjoy Life ones. This chocolate marshmallow S’more bar is sooo good!
Cinnamon bun bar:
Very good, but it does not taste like a cinnamon bun. It tastes more like a cranberry bar. The texture is very different. This bar is good, but not as good as the S’more bar!
Now, remember our mom insisted she wanted in on the action. My mom doesn’t have any food allergies (nor does my sister), so they came at it from the view of some used to “regular” food.
Overall, very good. And I don’t usually like cherry deserts. But the balance of ingredients is very good. When you start eating you can tell the cinnamon. Though when you finish eating there’s something like a grainy/powdery texture. But I would definitely go for more.
I don’t like it at all, I can’t explain it, but it might be that it seems too dense for my liking.
I like the texture. I like the taste. I like the color. It’s perfect.
Very good texture. Very good taste. Overall very good product.
In the end, Enjoy Life Foods, I think your ELFs did a good job and really made some amazing stuff!
No, I don’t mean a soup to go with a sandwich. I mean a soup made out of a sandwich. And by that I don’t mean a soup with chunks of sandwich in it, I mean a creamy, really delicious, soup made entirely from a sandwich. The best part? It not only tastes like a sandwich but it’s ready in minutes.
Due to the fact my esophagus has taken offense for some reason at solid food, I’ve been on a non-solid food diet for 8 weeks. Actually, today is day one of week 9. It does drive me crazy because I miss solids. I can’t go pick up a safe snack or treat at whole foods and eat it on the way home. I have to wait till I get home, and throw it through the blender first. There’s no more snacking as I cook an MC safe dinner. And, menus have changed. Some things I just don’t want to eat to be quite honest.
When I first started throwing things in the blender 2 months ago, I quickly learned that not everything tastes good pulverized together. Yes, I LOVE quinoa, but, I do not like the taste of it with other things in the blender. You know how some adults will tell picky eaters, “why do you have to separate everything when you eat it? It all gets mixed together in the stomach!” Well, here’s the answer:
The stomach doesn’t have taste buds!!
One dish may taste great together, even mixed together, but when you go to throw it in the blender, it really doesn’t taste good. So, I’ve set out to maintain some degree of sanity in the whole not-allowed-to-eat-solid-food thing over the last 8 weeks and I’ve been doing some kinda crazy experimenting here and there and discovered that some of my favorite foods in solid form really do taste really good as a creamy puréed soup! When I suggested some of them to my best friends they both looked at me like I was crazy. But I was desperate for some variety in what I was eating!
The first try was pizza. It was actually really good!!! Then I tried cinnamon buns with ice cream floating on top. That was really good. Brownie soup with ice cream (or without) was really great too. Then I took bacon, potato, Daiya cheese and some coconut milk. It. Was. Amazing. At another time I’ll post the recipe for cream of bacon soup. I also made chocolate cereal soup. That was really good and nice and creamy. But today, the star of the show would be my favorite.
Sandwich soup. Yup. It’s really simple.
You can prepare the sandwich like a regular looking sandwich like this, but it is totally NOT necessary. I usually just stick the stuff straight into my vitamix.
1. Tear/cut up the sandwich material and toss it in your blender.
3. Turn blender on low and slowly increase the speed till you get to the very highest speed. Leave it on high for a minute or two.
4. Pour, serve & enjoy.
Now, a few notes. I’m sure you all are wondering what it tastes like. Really, it tastes like a sandwich! I’m totally serious!!
However, unless you want to make tomato soup (which is really good too), don’t put tomato with the sandwich. The tomato has a tendency to overpower everything else when thrown in the blender so if you want to taste everything else, leave it out.
Also, I haven’t tried mustard, pickles and the like. But, I bet they’d make a good addition!
And, lastly, those of you who know me know I love frogs and know about Super Froggie and the Frogland gang (kid frogs with food allergies (and without) who help each other out and learn from each other). I love working on stuff related to them as a way to encourage others. But a friend decided to ask for a drawing of Super Froggie, with his cape and all (yes, including his belt and epipens!) for some secret project she was working on to encourage and cheer ME up as it’s been rough with not being allowed solid food for so long! And in the mail yesterday came THE most AWESOME glass I have ever seen which she had custom ordered from Starr Parnell. (It looks kinda not straight but that’s due to the angle I took the picture at. In real life it’s perfect). It was a complete surprise. But it was perfect! There is no way I can’t help it but smile when I drink out of this glass, even when I’m really not feeling great.
“Oh say does that star spangled banner yet wave, over the land of the free, and the home of the brave.”
It’s the last part of the last line in the US national anthem. But what does the national anthem have to do with food allergies? Looks like it’s time for a short history lesson.
Back during the war of 1812, in 1814, the British came and burned Washington DC. Then, they dropped off soldiers at North point and then sent their cannon ships up the Chesapeake Bay to Baltimore. De to the earthworks the citizens of Baltimore had dug, the soldiers on land couldn’t get to Baltimore without help from the Navy, but, the Royal Navy couldn’t get into Baltimore without first passing by Fort McHenry. On September 13th the ships stopped a certain distance from the fort and started the bombardment. Just before all this, a lawyer (Francis Scott Key) sailed toward the ships in a boat with a white flag to discuss the release of a prisoner of war. The release was accepted, but neither Key nor the prisoner released were not allowed to leave the ships till after the battle. It was from this location that Key watched the fort that protected his city be bombarded.
All day and all through the night, the Royal Navy sent bombshells at the fort as well as rockets (these rockets gave off red light, hence the line in the song “rocket’s red glare”). The fort’s cannon could not fire back as well. They were basically at the mercy of the British bombing. They tried to fire back as best as they possibly could, but they didn’t manage to take out the Royal Navy. Still, they were brave. They stood their ground. And they never gave up, even though a storm soaked them all night long as the bombardment continued.
Finally, in the morning, the Royal Navy stopped firing and there was silence. The air was covered in smoke that was hard to see through. As Key looked at the fort in the early light of dawn through the smoke from the cannon, he wondered what flag he would see. It was the American flag. And it wasn’t just a little flag, the troops at the fort raised up the large flag (which you can now see in the Smithsonian), and it was clear that the victory was won by the troops at Fort McHenry. The British sailed away, and the US was spared from the Royal Army burning Baltimore and working their way up North through the rest of the states. Key, penned a long poem, which later got put to music, and grew in popularity, and then officially became our National Anthem.
Now, back to how this relates to food allergies. I’ve grown up singing it. But the part at the end that always seems to stick out is how America is the “land of the free”, so I never really thought much about the next few words, “and the home of the brave.”
It took incredible bravery to fight in that battle when it seemed hopeless. The US’ cannon was no match for the Royal Navy’s cannon and rockets. But they didn’t give up. And they kept going despite the odds being against them. The pouring rain and storm. The smoke filled sky. Having less ammunition than the Royal Navy. Having less experience. Being outnumbered. But still, they held their ground, and they stood firm. And their bravery is now of what we sing in our anthem.
Those with food allergies understand well this feeling. Sometimes it seems like they are doing everything they can do, and they are still overwhelmed, bombarded with feelings of fear, doubt, “what ifs”, of possible reactions and more. Staying alive and staying sane requires bravery. But for them, giving up is just not an option. For me, despite having been through so much, having nearly not made it several times, giving up is not an option. I’ll keep fighting till the day they find the cure.
America is not remembered and defined by all the battles fought and every challenge and obstacle faced (if you study history there are a LOT of battles that have occurred since the American Revolution), but by the fact that while not every individual battle was won, they never gave up. It is their courage and bravery that is remembered and honored.
And, like that, so are those with food allergies more than every food they can’t eat, more than every reaction they’ve had, more than every challenge they’ve faced, but they are heroes because they never give up, they have courage, hope and bravery.
In math, ‘i’ is the square root of -1. It is an imaginary number. Remember, if you multiply two negative numbers together, the end result is positive. Same happens when you multiply two positive numbers together. When you have a square root, you have to multiply it by itself in order to get the perfect square and remove the annoying square root sign and get a whole number. Well, here is the problem. There is just no way that you can multiply two positive numbers to result in a negative number. And you can’t do that with two negative numbers either. This is why the square root of -1 is an imaginary number.
It doesn’t matter what insanely high power you raise ‘i’ to. You can raise it to the largest number you can fit on your piece of paper. But in the end, you’ll just end up with one of four answers: i (what you started with), -1, -i (the negative of what you started with), or 1. Which really, is a pretty small number, especially if you compare it to the power you had raised ‘i’ to.
Imaginary powers and fears may seem huge and overpowering and overwhelming. But often in the end, when you simplify and reduce it to more common terms, you realize it’s actually not as scary as it had seemed in your imagination.
Living with food allergies can be scary. And that’s normal. But it is easy to let the fears get multiplied exponentially and let your life be controlled by fear of the ‘what ifs’ and the unknowns. Then there is the opposite extreme of throwing caution to the wind and thinking you are invincible. Neither of these are good places to be. But finding a healthy balance in the middle is hard.
But when things see too scary or something, think more deeply about it and reason through it and you’ll probably notice that the situation which had previously seemed like a huge storm and mountain looming ahead isn’t quite as scary. Simplify the math equation into something that is a lot easier to understand and not as scary.
There are situations where it is just not safe to do something or go somewhere. But often if you take the right precautions and keep your epinephrine auto-injector with you, keep your wits about you, make sure others know if you’re having a reaction and take quick action if you do have a reaction, you don’t have to live in a bubble all. the. time. And living in a bubble can foster even more exponentially increasing fears. For some people, it just isn’t safe for them to go outside of the house. But for the majority of people, they don’t need to stay hidden away kept away from every possible trace of their allergens. So, talk with your allergist if you have concerns about being super sensitive to allergens. But fear doesn’t have to rule your life.