Given the length of this section, feel free to skip ahead to the specific information that you may require.

From my stomach to yours

1. Be knowledgable about what it means to have celiac disease and live gluten-free
2. Plan ahead: know gluten-free addresses and expected eating times
3. Don’t get hangry
4. Don’t expect anyone to think of your gluten-free diet
5. It’s just gluten-free food. You are not food. People love you, even if they don’t feed you. Don’t take it’s personally. And don’t care if they don’t care. But if someone thinks of you, let them know how happy it makes you. And tell them. Many times. Over and over.
6. Expect for things to go wrong even if people think of you and your gluten-free diet
7. Deal with your gluten-free life one meal and one conversation at a time and stay flexible
8. Compensate at home what you cannot get outside
9. Set a good example and think of others
10. Enjoy meeting other celiacs, but don’t fret if they are less than thrilled to meet you

From my stomach to yours

Some celiacs have a hard time with the diagnosis. They feel they are missing out due to their dietary restriction. Not only food, but on bonding time and on life.

In over three and half years of living with celiac disease, I discovered – as is often is the case – your state of mind, attitude and expectation level is an important contributor to peace of mind. This is particularly true for those of us who travel or eat out often. Spending too much time rubbing up against resistance, it gets tiring and you may end up frustrated and blame celiac disease for everything that is wrong in your life. Confront with such a high level of helplessness and anger, some celiacs start to be careless about their diet. This is a really bad strategy. Believe me: carelessness does not pay off and eventually catches up with you, even if you have no symptoms at first. Eventually everyone develops issues, some of them more uncomfortable than others. In my opinion long-term damage to my body is not worth the delight of being able to indulge in a glutinous treat for a few seconds. To be fair: I got ill and then obtained my diagnosis. My surroundings and I saw what gluten does to my body. In a sense I was very happy to finally know what was ailing me. And to find out how to improve my health, at no cost for medicine or its side-effects. It may sound crazy, but I feel very lucky to have “caught” something as “pleasant” such as celiac disease. Considering all the alternative diagnoses in the room back when I was sick, I truly got off easy. I am also grateful every day for being able to control this aspect of my health without having to depend on others.

Anyway, this is a place to share tips and tricks, behaviour that helps me be happy with celiac disease diagnosis. Keeping them in mind keeps me sane.

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So, here they are, my road rules for surviving with celiac disease:

1. Be knowledgable about what it means to have celiac disease and live gluten-free

When you obtain your celiac disease diagnosis and go gluten-free, it’s important to become knowledgeable on the subject. For this, I recommend Living Gluten-free for Dummies by Danna Korn. She is the founder of the network Raising our Celiac Kids (ROCK) and well-known in the celiac community. I found her book to be the best explanation on the causes and effects of celiac disease on the human body.

The book’s target group are readers without medical training. The symptoms of celiac disease are well-depicted and the chapter by chapter you are shown where to look for gluten and how to substitute gluten-containing products. It is also a wake-up call for people, who have been diagnosed with celiac disease and who are not living (entirely) gluten-free.

Overall, I found this book incredibly encouraging and helpful and if you are just starting out after your diagnosis, ensure to get ahold of a copy and read it front to back. You won’t need to read another book on the subject if you don’t want to. The book helped me understand that living gluten-free would not only be easy, but open my palate to a whole new world of culinary options. The book is written in a light and funny manner and is an easy, comfortable read.

There’s also an annex with recipes, and if you’re still aching for more you can purchase a second dummy-book by Danna with only recipes (which I have not read). As a vegetarian, I am not sure I agree with her suggestion to eat according to paleo or to ommit casein, so I chose to ignore this advice given I am not lactose or casein-intolerant (thank goodness!) and love a good piece of cheese.

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2. Plan ahead: know gluten-free addresses and expected eating times

At some point today, you are going to eat. Or at least want to eat. This is probably true for every day of your life, exceptions excluded. If you travel or eat out a lot never leave the house without a mental meal plan.

trainbreakfast

This can be anything from carrying your lunch or an emergency snack in your bag to be certain where the next supermarket is to actually taking a list of restaurants with you, including their business hours.

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3. Don’t get hangry

It’s also pretty likely that you will get hangry (hungry & angry) if you don’t eat eventually. I have lots of experience with being hangry, and I can assure you: life is better, if you aren’t hangry. I don’t know about you, but I get really cranky and little things that I usually wouldn’t pay too much attention to bother me to no end. My low blood sugar will make me feel awful, and distract me to the point that I become a different (unfriendly) person. Of course, I am exaggerating, but you get the point.

Those of us who live gluten-free are much more likely to get hangry than the regular Joe or Jane. Chances are also that once you are hangry, you will stay so longer than someone who can eat virtually anything without having to feel repercussions for their health.

So: while you should always refer to the first point on this list, you should also have a list of easily accessible items that you can purchase in an emergency.

packagedsalad

For me these are: fruit, salads, kefir, avocado and nuts – or hummus and gluten-free crackers.

hummusbought

These very basic foods keep me going for another few hours if need be. They are available at any supermarket and make a great emergency meal.

If I can’t get those (e.g. because the German Raststätten along the Autobahn only sells crap), I rely on cheese strings or milk (yes, even a cup of coffee helps). If all options are exhausted, a candy bar – preferably dark chocolate (not good, because it just ups the blood sugar rather than satiating), a smoothie or soda also do the trick. Ah, and French fries, if not contaminated.

Gluten-free French Fries
But like a candy bar, it’s not really a meal.

Of course, it’s also important to have a list of meals that can be prepared in a very short time and that keep over the course of a day without spoiling, even without a fridge. One of my go-to recipes for these situations is Jessi’s Ratatouille-style Vegetable Stir-Fry.

jessesvegetableswithquinoa

Also summer rolls work really well!

summerrolls

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4. Don’t expect anyone to think of your gluten-free diet

I know people with celiac disease who are regularly miserable because no one in their family, at work or at the restaurant takes their special dietary requirements into consideration.

Seriously: it’s your body, your special dietary concern and your life. Don’t rely on anyone else.
Yes, it might be nicer to be considered, but actively work to communicate your needs. You are, after all, already aware of what you need. So call ahead and ask. If you cannot be accommodated (either because out of lack for want or due to fear or because after the conversation you have a bad feeling) accommodate yourself.

I’ve been able to persuade kitchen staff to give me a bowl of plain yoghurt, even though it was not on the menu. Be flexible when focusing on not getting hangry.

improvisedbreakfast

I can’t tell you how often I have watched others people eat. Surprisingly, prior to my diagnosis this would really bother me. Since I went gluten-free, it’s no longer a concern. On the contrary.
I’ll let you in on a little secret: I am kind of glad that I don’t have to eat everyone’s birthday cake at work. Or try all of the left overs from this weekend’s party that I didn’t get invited to. Or eat every single piece of candy that people put in front of me. We live in a food overabundant society.

poutine

Most of us could easily do with less than half of what we eat and still be well fed. We eat way too much too often for the strangest of motivations.

Ever since I realized that not eating once doesn’t translate to never eating again, I feel much better about not eating. Which brings me to:

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5. It’s just gluten-free food. You are not food. People love you, even if they don’t feed you. Don’t take it’s personally. And don’t care if they don’t care. But if someone thinks of you, let them know how happy it makes you. And tell them. Many times. Over and over.

‘Nuff said.

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6. Expect for things to go wrong even if people think of you and your gluten-free diet

And then there is this: People can think of you, they can make a serious attempt to incorporate your dietary needs into their plans and serve something that is “gluten-free”, but actually isn’t.
Expect this to happen. Eat before the party or dinner at the new restaurant. Particularly if it’s your first time and you don’t know the host yet. Usually you can always find something to eat – this is where curbing your expectations come in.

Even I need to be reminded of this every once in a while – after three and a half years and so many successful culinary outings, you tend to get careless.

The other day I was sitting hangry in a restaurant at the end of the night after being served a tiny dish. Everyone else’s portions were huge, I had trouble even finding the food on my plate. My very nicely worded complaint to the staff didn’t render any additional food, much less the question of whether we would like dessert. Unwilling to have my in-laws spend any more money in this crappy place, I felt the evening had been ruined.

I should have known better – and had an emergency something in my purse. I hadn’t expected this situation after talking to the restaurant twice prior to said dinner. While I did eat gluten-free, I was starving. What seemed like a nice offer for the restaurant to make to its vegetarian guests, really didn’t satisfy my needs in the least.

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7. Deal with your gluten-free life one meal and one conversation at a time and stay flexible

With celiac disease, you end up talking to people about food much more than you ever thought possible. You may have guessed: I’m kind of outgoing. Still, I’ve been in situations during which I did not want to make my dietary concerns a topic of discussions.
Whatever the reason: it’s perfectly legitimate to consider your diet a deeply private matter. I urge you to talk to others anyway. With celiac disease you cannot leave your gut’s fate up to someone else’s control. You must at least give them the opportunity to do right by you.
My trick: I call ahead of time, when business is slow. During spontaneous outings, I seek a private conversations with the staff if I don’t want my company to get in ton the details. I’ve also used the “Oh, I’ve already eaten”-excuse. I’ve also excused myself from a work party and gone to the back room and cooked my own dinner when the caterer was too scared of cooking for me and the person organizing the event and I agreed that this would be the easiest solution for everyone.

emergencybusinessdinner

As long as you are at peace with whatever you are doing: do whatever works for you.

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8. Compensate at home what you cannot get outside

It’s not news that people with celiac disease spend a lot of time watching others eat. When my appetite for something gets too overwhelming, I recreate whatever I was missing at home. It keeps me sane. Shortly after my diagnosis, this happened often and I would bake cake, cookies and purchase gluten-free imitation candy. Three and a half years into the game I am happy to report that my need to recreate “missed” experiences has dwindled to a minimum.

In part, because the availability of gluten-free alternatives has greatly improved. glutenfreebrownies

In part also, I recognize how much of it is senseless eating. In part, because knowing I could have whatever I want at least in theory makes me feel a whole lot less desperate. So: don’t be afraid to indulge in cravings (as long as they are gluten-free) every once in a while. Also, save some of the happiness for a rainy day and actively work on establishing your internal harmony and peace with living gluten-free.

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9. Set a good example and think of others

I have met people with celiac disease who think the universe revolves around their dietary restriction. They are miffed when restaurants or friends and family have no idea what gluten is or what it means to have celiac disease.

I always ask them about the day that they obtained their celiac diagnosis and if they knew what celiac disease or gluten was. They rarely answer that they did.

chickpeasalad

The point is: if you didn’t know, don’t expect others to know either. But to inform them. Nicely!

The people who think their dietary restriction is the center of the universe also perceive their motivation as superior to that of others. To them, it’s not as legitimate as eating a certain way for religious reasons or due to ethical or personal choice. They feel they are being forced to stay gluten-free and thus should be taken more seriously and accommodated more often, even before others.

Of course it is different when you don’t eat something out of choice vs. refraining from imbibing something because it will make you sick. But: both parties deserve the same amount of respect and should have the same right in being accommodated.

I find we will have a more accommodating culture if we go ahead of all others and set a good example. When planning your next event or bringing something to eat into work: think of others and consider their dietary restrictions, whether self-imposed or forced, as much as your own. Most of the time it can be done easily. They will be pretty grateful, trust me. And who knows: maybe they will consider you next time, too?

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10. Enjoy meeting other celiacs, but don’t fret if they are less than thrilled to meet you

I met my first set of physical set of people with celiac disease about four months after my diagnosis. We went out for pizza and there were fourteen of us. I hadn’t expected it, but meeting them really had such a calming effect on me. I also felt much, much less alone. My husband, who eats gluten-free at home as it is easier (and who didn’t eat if there was nothing for me in solidarity back then), was at the restaurant, too. While his support made all the difference during the first few months after my diagnosis, he couldn’t give me what these people did: a sense of belonging.

Don’t expect all encounters to go this way. I’ve met people, who are deeply uncomfortable talking about celiac disease. They may feel guilty. Like damaged goods. Or like they did something to bring this “horrible situation” upon themselves.

Also don’t be surprised if you step on other people’s toes when you tell them that you live strictly gluten-free. A surprisingly high amount of people with a confirmed celiac diagnosis stray off-path and don’t pay attention to contamination or celebrate an actual gluten-fest once a year.

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And here we come full circle: I understand how living gluten-free can be a difficult endeavor. But hopefully some of the suggestions in this section may help you perceive life with your celiac diagnosis differently. After all, you are doing it for your own health!