Everyone will have well-meaning advice for you. Most of it is total crap.

If you’re open with your diagnosis, really any diagnosis, people will start to speak to you about their cousin’s, brother’s, step-mother’s, half-sister’s, third cousin’s child who has something close to what you’re going through and “I heard that they use blah.” Considering one in every 133 people in the world have Celiac Disease, I can believe that you might know someone else who is related to someone who has it. And I know that this is just an attempt to empathize, and I accept that. But I hate empathy. Honestly, it’s the fakest of all emotions, it’s turning someone else’s situation into something that you can relate to. And it works, up until you start offering friendly advice based on it.

Friendly advice, if unsolicited, is just an opinion that you’re forcing on someone else. And yes, I know that you’re here seeking advice, but I’m not doing anything other than putting it out there. It’s your choice if you read it or not. Choosing to read this means that you’re soliciting it. It’s the people that do that “I read an article about….” and start to give you a lecture of super wheat and why it’s causing so many GI problems in the world, which isn’t helpful because Celiac Disease goes back to the time of the ancient Greeks. I kid you not! If it’s been around that long, I doubt that the GMO wheat is really causing it.

Everyone knows the saying about opinions and assholes, and advice kind of goes down the same road, because without facts behind it, that’s all it is, an opinion. And some of the advice you’re going to be getting is good. Some of it is going to be cook books or recipes.

And then you get to the people that are going to offer the fa57897774d diet advice. The kind of advice that comes from Wheat Belly or Paleo dieting, you know the kind that I’m talking about. The ones that talk about their great experience getting rid of whatever the world thinks is bad for them. 10 years ago they were taking to you about Atkins or South Beach. They also proselytize about superfood and how kale changed their lives. You know the at least one person like them. These people will offer you advice about giving up so much more than just gluten. You should also swear off processed foods and chocolate and sugar and…

To them I say a big old FUCK YOU! Seriously, there is only so much of this that a girl can take! People with actual diagnosed food issues are giving up so much, already! Why would you suggest that they give up more?! So they can go out and stare at even more food that they can’t have?! Seriously!?giphy

Listen, we have been given lemons but before we turn them into lemonade you’re making us consider turning them into lemon bombs and throwing them at you. Instead, I think I’ll just make them into a lemon drop with a good gluten free vodka (still gotta get to that whole concept) and have a drink. Because violence isn’t the answer people. It’s never the answer.

But you’re giving up enough. You’re giving up enough for your own health, you never NEED to give up more. Don’t ever make anyone feel like you need to. In fact, I say you should add MORE to your diet!

When I was 13 years old I gave up red meat. Just stopped eating it. I gave up beef and pork vpqand venison and all of it. I stayed that way for 22 years (well pork and bacon came back to my diet…because bacon), and the day I got diagnosed with Celiac was the day I decided to eat beef again. I don’t eat a lot of it, but I’m not going to deprive myself one more kind of dining experience because I can’t eat gluten anymore.

So if you have that food thing that you’re sworn off of for one reason or another, or just something that you haven’t tried because you’re scared, STOP IT. Unless it’s going to make you sick, that it one less thing in the world that you can’t eat. Do you really want one more food thing in the world that you avoid? A tomato is just a tomato, it can’t hurt you if you eat it. I swear.

So, let me step off of the soapbox for a moment, because that’s my opinion and see my statement above on opinions. But, like I said last week, you need to make sure that the information that you look at is good. Check it out. Paleo, if you research it well, show up as not being helpful to most people and super harmful to children and babies. And you’ll probably only run into a few people who talk about that. For the most part it’s going to be the well-meaning but awkward empathy and suggestions about this brand of gluten free food that they heard about, “I think its call Udi’s but I can’t quite remember.” All you can really do is that awkward nodding and listening noises and promises of “oh I’ll have to look into that.”

The best are the care packages. My sister-in-law has been gluten free for years (I call her my Celia Sissy because…yeah) and she brought my over this great care package a few weeks after my diagnosis. All of it was stuff that she liked. Her favorite brand of flour, xantham gum, protein bars and stuff like that. This is the kind of advice that you need. You need to try things, so this was really welcomed. I had co-workers bring me cook books and people point me to blogs or restaurants. One barista at Starbucks, who is now a good friend, spent hours on the phone to see what kind of drinks I could still have. These were helpful. These were needed and wanted and well treasured pieces of advice and assistance.

The rest, well…lemon drops and smiles.

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You are your own gatekeeper (aka how to avoid GIGO)

So today a good friend of mine got the kind of news from her doctor that really puts things into perspective. It makes me feel like, what I have going on is pretty minor. Yeah, I can’t eat a normal sandwich, so what!? That’s nothing. I have to be extra careful when I eat and read a label. That is all things that are within my control. She’s seriously been kind of the best voice of reason over the last year, and made me laugh at myself more often than not, so I am going to give her exactly what she gave me when I got my life changing diagnosis, because right now the advice is all the same, “so now what?”

Literally, that’s what she said to me. “Okay, now we know what’s going on, so what’s next?” Well, whenever your doctor tells you anything there’s only ever one what’s next, and it’s a he exact opposite of what you feel should be the right answer. We live in a world where all the information that we ever want to know about is right at our fingers. We have Google and Wikipedia and Web MD. We have millions of people writing blogs about whatever they want. We have Food Babe and Jenny McCarthy and Goop. We have all of these things, but nothing takes the place of the best thing that we have. Our doctors.

Yup, when all is said and done, you can go out and read a million articles about whatever diagnosis you have. You can go to forums and message boards and discuss with people every nuance of everything. You can read testimonials and live chat with whomever you want, but do you really know where that information came from? That’s the thing about Dr. Google, he is open source. He pulls from everywhere and doesn’t really vet where his information comes from. Literally, Dr. Google is a GIGO (garbage in, garbage out.) He’s nothing more than a computer program who pulls from the most linked resources. If millions of news articles are linking to a Food Babe post, well Google is going to pull up that post from Food Babe and your number one search result, for the good or the bad.

GIGO is a computer programming term for what my Communication Study professors called Gate Keeping. If you’re only putting garbage information into a program, it’s only going to put garbage out. Since Google was still a computer program last time I checked, if everyone says the crap is the best links out there, Google is going to bring back the crap. It can’t differentiate the good from the bad. The best example of this is Dan Savage’s war against Rick Santorum. If you don’t know anything about it…Google it. You’ll figure it out pretty quickly.

So, how does one make this computer program give you the best information? Well, you don’t. Not unless you’re Stephen Colbert or Dan Savage and have an entire army of followers. No, us lowly peons cannot control the Google. We have to do it manually. Yup, I know effort. But that’s called Gate Keeping.

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The Oz Gatekeeper gets it.

See, you can watch Fox news and take all of those stories about Barack Obama being a secret Muslim as truth. But hopefully, if you’re reading this you’re not that stupid, you don’t believe that. You should be checking and seeing where that information comes from. If they’re a reputable source, they’ll tell you where they got their information from. And if that person is reputable, then you can trace the breadcrumbs back to an honest to goodness fact based study or credible source. If whatever you hear traces back to a non-credible source, or something that is opinion based, then move along. It’s not worth your time. But if there’s education behind it or something else that you can verify, you know that what you’re reading is the truth. That is what Gate Keeping is all about, and that is exactly why you can’t really trust Dr. Google.

If you want to do research, just make sure that you know where the facts came from. If you can search it out and find the study or the science behind it. Make sure that the science behind it is repeatable, and that is has been peer reviewed. Find out who is doing the study and how credible the group is. Check out the credentials of the person that you listening to. And above all else, make sure that you don’t have garbage going in. Garbage only makes you crazy.

So, friend, if you read this, take a piece of advice from me to you. What happens next is, you wait. Talk to your doctor. Do some research to know what questions to ask, but make sure you don’t read garbage. Garbage will only make you crazy. When you see your Doctor, ask questions. Find out where you get the best information, but trust in what they say.

Any why should you listen to me? Well,  I did go to school and study communication along with writing. I did go through all of this and make all of the mistakes that I’m saying not to. But mostly because, I’m going to give you all of the citations for my information!

Post Bibliography:

https://en.wikipedia.org/wiki/Garbage_in,_garbage_out

http://communicationtheory.org/gatekeeping-theory/

http://www.npr.org/sections/thesalt/2014/12/04/364745790/food-babe-or-fear-babe-as-activist-s-profile-grows-so-do-her-critics

http://www.mirror.co.uk/lifestyle/health/how-much-can-you-actually-7012479

Now, take your new found skills in Gate Keeping and seek knowledge knowing that the stuff that you find will be the good stuff.

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You cannot control where other people’s hands go

This weekend I went to Emerald City Comic Con.

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Me and A Giant Funk Pop Groot

I have done conventions since going gluten free, and it’s an experience. First, you’re packed into a place with thousands of people, and packed is the correct word here. Second, they’re all eating cheap and fast food (Washington State Convention Center has a Subway actually in the convention space and it’s always got a line) Third, EVERYONE is touching EVERYTHING. You’re going to booths and looking at good. You’re going up and down escalators. And the bathrooms, well they’re always full with long lines to just get to a sink let along a stall, so hand washing is kind of at a minimum. This seems like a perfect storm for getting glutened. And it might be. I mean you’re not sitting in a flour factory and breathing in the gluten, but it could be spread everywhere.

And yet, I don’t get sick at cons. Sure I get the con funk, but that’s exhaustion and dehydration in combination with that many people together, germs get passed around like it’s a fashion trend. But, so far I have been safe from the gluten.

That might be because I’m a bit paranoid.

Okay, I’m going to admit it. I am paranoid. I cannot control where anyone else’s hands go. And the amount of people that are concerned with crumbs is very limited. At work, I wipe down tables in the lunchroom before I sit down to eat. Even then I put down several layers of paper towels just to make sure. When people are passing around food or papers, I’m watching their hands. Did they have any crackers of bread near them? Did they wipe between touching their food and the papers? Are their any crumbs anywhere on this plate of cake? And then, I’m super careful. I might b e overly paranoid about crumbs, but no one else is going to be for me.

See, I can only control where my hands go. As much as I would like to spray people in the face with water, like training a cat to not jump on the counters, I cannot. Sure we’re all washable, but you’re not going to get sick if I don’t wash my hands. I can be ill for 3 days. And so I’m watching their hands, so much more than I did before. It’s kind of an obsession at this point. I’m stating at people’s hands, watching them eat and touch things, and I think no one really understands why.

My hands can, and do, go to the sink before I eat something or touch my mouth. And this is hard because I’m a very expressive person and I talk with my hands a lot. That means hands to face when there’s gasping or thinking and just trying to clear my brain…I touch my face and mouth a lot. And yet, when I suspect that I’ve touched something with gluten…well…

Have you ever had to clean up something really gross, like bodily fluids or picked up after your pet who went somewhere they shouldn’t? You know that “eww…dog germs” feeling you get on your hand afterwards? Like your hand is just crawling with ookies and you can’t touch anything? And you hold it away from you as a reminder not to touch ANYTHING? Yeah, that’s what I do. I even hold it away from my body just to be safe. Bread is poopYup, I treat gluten and wheat the same way I treat poop. But it keeps me safe. And safe is good. You hear about these poor kids at school getting sick from a neighboring kid that isn’t careful about their sandwich. The same thing happens in most of our shared spaces. I feel like adults can be a careless as a kindergardener sometimes.

And now that I’ve shared my obsessiveness, I guess it’s keeping you safe. I don’t know. Honestly if my paranoia makes someone else just a little bit safer, I’m doing my job. Just call me Super Gluten Free Woman, keeping you safe by stating the obvious.

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And we can see why I went to school for writing and not art…

 

People will be okay with you being gluten free

I have one regret with this blog, that I choose to post it on Monday. I work at a medical call center (yeah that’s a thing) and for some reason everyone and their mother (and their doctor) feels like it’s important to call on a Monday. Monday we handle 25% of our weekly call volume. That may not seem like a lot, but we’re open 7 days a week. Anyway, working in a medical office (of sorts), I have a lot of perspective on the needs a requests that patients make. Last week, I had someone tell me about a doozy of a call. It was someone with IBIS, asking their doctor for a card to take to restaurants that says she has a medical reason to bring her own food into their restaurant…

I had so many feels about this request. One, where the fuck are you eating lady!? Two…fucking waaaah.

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I have a lot of sympathy for the fellow suffers of intestinal issues.  I really do. There’s a lot of “no” when you’re dealing with food, but I wouldn’t expect to go into a McDonalds and expect them to create me something that I CAN eat. No, I avoid McDonalds…and Burger King…and Pizza Hut…well a lot of places. I do not expect the restaurant to bend over backwards to meet my needs, I will take the time to make sure I can eat there. Call the restaurant to ask about their safety precautions, read others reviews about their experience. If I get sick, I don’t blame the restaurant, I blame myself. Usually it is my fault. And I DO NOT ask my doctor for a special card that gives me permission to bring food into another restaurant’s space. Food isn’t like a service animal, it can and will negatively impact the restaurant if you bring your own food in. And, really, it’s not that hard to make sure you can eat someplace. People with all sorts of food based illnesses (from allergies to…well…celiac) do it all the time. There are even people with Crones and Diverticulitis that eat out, IBIS isn’t nearly as negatively impactful as either of those.

If you just got your diagnosis, you have probably been in a bit of a gluten hermitage. You have sequestered yourself in your home because home is safe. Home is good. Home is where you can control EVERYTHING! Well, you cannot stay home for the rest of your life. You will need to eat out at some point in tie. I’m sorry to say that, but it’s true. At some point, you will need to burst out of that little bubble that you are in, and just go for it, but you gotta make sure you look before you leap. Every time someone says that to me, I picture that scene from the swords and the stone where Merlin and Arthur are both squirrels learning to jump from branch to branch. That’s pretty much your new life. You will be leaping from a safe place to a safe place and hoping you don’t fall.

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You first line of defense…Google. Google can find anything you need. You can view menus and look at reviews. Just plan on doing that for the rest of your life (or until someone find a cure for celiac disease). Right now take a moment and Google some of your favorite places to eat. Really…Google their name with the words gluten free, it’ll auto-populate. I’ll wait and take another sip of the super yummy GF Grapefruit Vodka that I found this week. Heck, take an hour, I got a whole glass.

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Now, you might like what you found, you might not like what you found. You probably found Find Me Gluten Free, it’s like Yelp for the gluten free community. Take some of the reviews for what they are, because they aren’t always great, but it’s the same with Yelp. Now you have a place to start. Sure your favorite pizza place might have a gluten free crust, but do they cook it in the same oven with the gluten pizzas? Do they use the same containers of toppings? Do they use their hands for utensils? Yup, you have to ask all of those questions. Some of them you might know, some you might now. You cannot see into the back of a Pizza Hut, but something like a Mod pizza, you can get a pretty good idea. I had a friend working at Mod after I got my diagnosis. He looked at their practices and thought to himself, “why do you even sell gluten free anything? The people who need it can’t eat here?” It explains why I got glutened after I ate at Mod. I honestly wasn’t thinking. They used the same hands and spoons on the gluten crusts that they used on the gluten free ones. Even changing your gloves can’t help with that. If you live in Oregon, you might be able to go to Subway and get a gluten free sub (yes we are very envious of Oregon), but unless they’re pulling their ingredients from the cooler, can a celiac really eat there? I think nay.

I’m sure you came across at least one place that you like to eat and has a gluten free menu, but no review. You can try it, and should try it and submit a review to Find Me Gluten Free, but you will need to do some reconnaissance. Pick up your phone and call! Really, I mean speaking to people. It’s totally novel! When you call you want to ask a couple of general questions and a couple of really pointed ones at an item or two you’re actually interested in eating, but the conversation needs to start the same way. “Hi, I have celiac disease and I’m interesting in eating at your establishment.” The rest comes from there. If they ask you what celiac is, hang up the phone.  There have been no precautions made. If they say that their chief doesn’t believe in gluten intolerance, hang up the phone because that is just ignorant. For the most part, people will know. 1 in 33 people…by this point in time, someone has come across it. The rest is just some simple questions:

  1. Do you have a separate part in your kitchen that you use to prepare your gluten free food? If no, do you use clean knifes and cutting boards?
  2. Do the gluten free ingredients share a griddle or cooking surface with bread or any other gluteny foods?
  3. Do you have a dedicated gluten free fryer?
  4. Questions about substitutions and or questionable ingredients…

If the answer to question one is at all no, find another place. It doesn’t matter if you really love the place, find anywhere else. I went to one breakfast here in Seattle that boasted about this gluten free fare. They had gluten free bread and gluten free French toast and gluten free pancakes…yay right? What did I end up eating, an omelet and a bowl of fruit. It was an okay omelet and fresh fruit, but to have all of these gluten free things dangled in front of me, I felt kind of cheated. They only had one griddle, one toaster, one vat of French toast batter…yeah…I wasn’t satisfied. And that was with a phone call. I knew going in I wasn’t going to be able to eat a lot, so I planned for it. Still didn’t have to bring my own food in, but I still wasn’t happy with the experience.

What I’m coming around to is one really important truth. No one is judging you! Really, you can go into a restaurant and act like an episode of Portlandia and (if they’re worth you business) you are not being judged.portlandia-is-it-local-with-text

My mother has a lot of food allergies: eggs, nut, citrus, soy, and peanuts. Those are just the big ones. She wanders around with Benadryl and an epi pen and knows how and when to use them. She has sent things back so many times over the 18 years that I lived with her, and we have NEVER been kicked out of a place. We have walked out. We have sent food back multiple times. We have had to had brand new food made, and still never been kicked out of anywhere. A celiac asking for a few precautions is nothing compared to that. Food allergy suffers have so much more to deal with, and they still eat out. It’s doable.

Have some confidence in yourself. When the server comes to your table, just let them know, “I have celiac, so I have to be 100% gluten free. Can you make sure you inform the chiefs of my food issues?” The answer to this will always be “absolutely.” If there answer is anything else, walk away. Just get up and walk away. Put some money for drinks on your table and walk away. This is your health here, and you don’t mess with your health. And considering that places like Red Robin and PF Chang’s can get it right, it shouldn’t be a problem for most family and fine dining restaurants. And, you know what, they won’t really judge you as long as your polite and reasonable. Ask questions, and engage the server.

So, in summary:

  • Research
  • Call ahead
  • Stand your ground
  • Tip well (it’s not an apology it’s a reward for getting it all right)

With those things, you can easily have a life. You can still enjoy having someone else make you food. Sure, you’re always going to be the one to make the choice of the bar to meet your friends for happy hour. You will always choose the location of your dinner party, but you can enjoy having someone else make your food. And it doesn’t matter if you have IBS or Crones or Celiac, don’t feel bad standing up for yourself and your health. Anyone worth taking your money will respect that.

Now, it’s the end of a Monday, and I just really want to spend some time relaxing. Tomorrow I have to go back to work.