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My life with a Celiac

By Edited Mar 28, 2014 2 6

Logo of the Canadian Celiac Association
Credit: http://www.celiacns.ca/

Everybody has heard of the health trends and diets, the gluten-free movements and crazes.

It seems like everybody wants to be gluten free these days, and more and more people show up with allergies and intolerance to wheat, gluten, grains, and similar things. 

And the more people join this movement, the more this issue seems to become more of a spectacle.  

I’ve been living around a gluten free lifestyle for several years now. But not because I’m on a special diet, or because of an allergy. I switched because, a few years ago, my girlfriend at the time has been diagnosed with Celiac’s disease. And even though this relationship didn’t last, fate wanted me to end up in a very serious relationship later with someone, who’s also a Celiac. I know, right.

Though, at first I didn’t even know what that diagnosis would mean, and when I heard that this “gluten” is commonly found in wheat, I thought what many others are thinking: How the hell are you supposed to live and enjoy life? That’s in everything, everywhere.

Truth is, it’s not. 

So I ran with it. I changed my way of approaching food, started to cook more at home, and be more conscious about what I buy and what I consume. 

I’ve learned a few things along my way of what it means to live with a Celiac, how to support. And though I’m not 100% gluten free myself, I find it is very important for the spouses, family members and friends of someone with Celiac’s to speak up be supportive in public. Because, unfortunately, this disease is still very underrated.

I’m sure there are many forums and blogs and vlogs about Celiac’s, from a Celiac, for the Celiac. However, I find that most non Celiac’s usually won’t pay attention to the outcries and pleas of these communities, since they simply can’t relate. 

So I found it neccesseray to speak out on behalf of all non Celiac supports of Celiacs. 

Here a are a few things I’ve learned as the partner of someone with Celiac’s disease.

Understand the situation

First and foremost, if you want to truly support a special Celiac in your life, you'll need to understand what all of that means. It's easy to let someone be gluten free and shut up about it, but true support comes by accepting this lifestyle in your own life as much as possible.

This doesn't mean you have to become completely gluten free yourself, just keep in mind how much easier it is for someone with Celiac's, if the people closest to them are supporting them as much as possible.

While this article will cover a few ideas I've gathered throughout my exposure to this subject in detail, at this point I'd like to outline a few key issues and common misconceptions about the day-to-day life with Celiac's disease. 

Celiac's Disease is not an allergy. There's no pill for it, no treatment or medical intervention. The only thing a person can do is to cut out gluten completely from their diet. There is no such thing as "a little bit Celiac". This condition can cause serious harm to the person, and sometimes there might just be minor symptoms, or non at all, to confirm that. 

With Celiac's, it's not a diet, it's a lifestyle. Here, a person can't cheat. There's no end. Maybe there's a cure or treatment in the future, but as of right now, it is what it is. This is important to understand, because it will change your attitude once you've realized that there's no grey zone for someone with Celiac's. It's all or nothing.

Gluten free doesn't mean the end of your life. I've heard it many, many times: "Gluten Free? There's no flavor or texture in that. Good luck enjoying anything now! " and similar statements. Gluten doesn't have flavor. Removing it doesn't mean you remove any kind of taste. 

Most importantly, keep a positive attitude. Gluten is very harmful to a Celiac, thus the reasons for the change of diet are health and awareness in our daily food consumption. It's not the worst thing that could happen to anyone, nor does it have to be a reason to be sad or negative. It's a path towards a healthier self, which a Celiac now has to walk on, and you have the chance to be there with them every step of the way. 

In our house, we're enjoying all sorts of delicious meals and we're having fun preparing them together. There's no gluten in our house, yet we are baking cupcakes, cooking ethnic dishes and enjoying a lazy night-in with pizza and ice cream just as anybody else does. It's what you make of it, right?

Encourage to be gluten free

It's not easy to live gluten free. I mean truly free from any trace of the gluten protein, without any kind of cross-contamination. People with Celiac's disease aren't just intolerant, they are forced to avoid one of the most common ingredients in the world, or risk becoming very, very sick. 

In my experience, this fact causes people with Celiac's to feel a certain level of shame for this condition. They might act as though it's not a big deal, that they are content with yet another salad with boring dressing, because they can't seem to find anything else they can eat on the menu. Or it seems hard for them to speak up and let the people around them know that they need a special treatment--it might make them feel high maintenance or simply ashamed. They might even get pressured into eating gluten, like the birthday cake at a friends place, because, you know, what damage can one slice do?

The fact is, it can cause a lot of damage, whether there are heavy symptoms or not. In fact, I was shocked by the amount of people, who don't understand the difference between an intolerance to gluten, and this disease. I’ve heard stories of them insisting  on their friends to expose themselves to gluten, so they can be "part of it".

Quite honestly, I found it very frustrating how little people where taking this seriously.

If you are related to someone with Celiac's--whether it's your spouse, your child, or a friend--encourage them to be treated with respect, to speak up and ensure their own health without having to compromise. 

I believe that it’s very important for someone with Celiac's disease to have people standing behind them, that understand and help them to feel good about themselves. This is not a terminal condition, true, but it's a condition that needs a lot of homework and dedication. Treated with enough respect, understanding and support, this will be so much easier for everyone, and can take a huge load of someone suffering from Celiac's disease. 

Personally, I'd rather be the bad guy by telling my fiancee that she can't have that cake, than having her damaging herself, because she gave into the pressure. 

When we go out for supper, I always keep a close eye on how the people in the restaurant are handling the plates, and if there's any doubt in my mind whether the staff knows what's going on with us, I will encourage my girl that we should go somewhere else. Even if this place is the only place in town that has what we crave, it's simply not worth it for her to be exposed to gluten. 

Even if the place seems to be on top of the issue (and more and more restaurants are becoming aware of it), I understand that kitchens are busy, and things happen. On occasion, a crumb of some sort of contaminated food has jumped dishes and landed on her plate. This case proves how important it is to make this situation clear from the moment the server greets you, because now they will understand why we have to return the food. 

Now it's also important to encourage the special Celiac in your life to speak up and request a new plate. 

I understand how hard it can be to make the staff work a double shift just so one person can eat, but we're paying for their service after all, and if they are inclined to fix the issue, I will always be inclined to leave a generous tip. 

I also like to have fun with this at times. When I order myself a huge, gluten-filled burger, I never like the pickle that comes with it. But she does. So I'll ask the waiter to put the pickle of my burger on a separate plate before it touches any of that mean gluten, so my girl can enjoy it. Everybody laughs and thinks it's so cute, the staff can do something  good and the Celiac across the table feels special in a very good way. And I don't have to deal with the pickle. Everybody wins.

I've found patience is very important. More likely than not, the Celiac will eventually start writing off certain types of food or restaurants. But in my experience, I've found that, if I am looking hard enough, I might fight just the perfect place to go to. There are a few helpful online services, and of course your local Celiac Association, to check out, and more often than not I was able to find one of those special places to eat at.

I mean those special places, that will go out of their way to make a Celiac feel welcome and safe. Take them there. Show them that it’s possible to eat as everybody else does.

Gluten free pasta? No problem. Gluten free bread with oil and gluten free vinegar? Of course. And naturally, all of their sauces are gluten free, too. 

Check the internet for those places, they do exists, and though they tend to charge something like an extra dollar for the gluten free service, I believe it's worth the relief. After all, the staff has be trained in the concept of cross-contamination and true gluten free service, so an extra dollar or two is really not so much of a big deal, either. 

I'd like to point out, though, that some places will take advantage of this "special need", and charge a ridiculous amount for the gluten free food. Some places even forget to mention the extra charge all together. Like this sushi place in Vancouver, that charges extra for Tamari (a gluten free soy sauce), but didn't tell us until we saw an extra charge on the bill. 

For the most part, though, restaurants are pretty reasonable.

And even if all else fails, stress the internet, find a gluten free version of their favorite dish and do your best in your own kitchen. Invite them for a gluten free night-in. Even if you can't cook to save your life, it will make their gluten free hearts smile, I promise.

It's not easy to live with this condition, and it still is relatively new and hard to understand. That's why it's so important to stand behind the people you love and show them that it is okay to be special. 

Read the labels

When I first was introduced to the concept of gluten, I couldn't believe how much of it is everywhere. I quickly began to understand how hard it must be for a Celiac, because you can't trust anything anymore.

There's gluten in chocolate.

There's gluten in potato chips.

It's in spices mixes.

In sauces.

And deserts.

Cosmetics.

Medication.

Pet food.

And so on and so forth.

Once I figured out that gluten was everywhere, I wondered how someone with Celiac's would ever be supposed to stay away from it. The answer seemed simple at first: read the labels. 

But how on earth is one person supposed to keep up with all of that? And to top it all off, ingredients can change without a warning, or from place to place. Some companies, for example, don't use wheat flour in some countries, and, for the same products, they use it as a filler in other countries. Imagine living in a world, in which one of the basic human necessities--food--appears nothing but hostile to you.

I quickly began to take things into my own hands. Literally, I would take the box of whatever it was we were going to buy and read through every single ingredient for traces of gluten. Not once do I go through a grocery store and don't check for the contents of the food I'm going to buy.

The fun doesn't stop there. Once you start reading the labels of the products you buy, you will quickly realize how much of it you don't understand, how little you know about the food you eat. And there's gluten hidden everywhere.

Of course, wheat and wheat flour are red flags right there. But that doesn't mean that a product without wheat doesn't contain gluten, as well. For example, barely is processed into a sugar called maltodextrin. A similar sugar can also be won out of corn, which would be gluten free, but unless the label explicitly says corn maltodextrin, it's never a safe bet to buy the product. Other grains also contain gluten, such as spelt, rye, and kamut. It's quite an extensive list of the grains, and products thereof, that are and aren't safe, too many to list them all here in detail. This is why I'm constantly stressing the internet to try and figure out what one can eat and what is to be avoided. 

Some products, that appear to contain no gluten, may be processed or handled in an environment that also handles products with gluten, which will pose a serious cross-contamination risk. This, too, is an easy one to miss if you spend your shopping time reading through label after label, thus making it more important to have help with this enormous task. Because, on top of just reading through labels, they must now educate themselves about everything that may or may not be gluten, besides the obvious wheat products.

The safest way to guarantee a a product is gluten free is the certified gluten free label. Similar to other allergen free products, to be able to call their product gluten free, the manufacturer has to meet certain standards within their facilities and ingredients. However, it's important to remember that the thresholds for what is considered gluten free vary from region to region. Some countries allow for a slightly bigger margin than others. So beware of imported products, even if they say gluten free on the label. 

At first I didn't think much of all of that. Though, after a few months of stepping farther and farther into this gluten free chaos, I realized that this is going to have to effect me as well if I truly wanted to care for my partner's health. 

I believe that it's very important for me to be a part of ensuring a product is safe. I could not imagine what it would feel like if I had to go through all of those labels and ingredients myself, if I was the Celiac, not to mention the homework and research required to understand what and where gluten actually is. 

For the person with Celiac's disease, it's an enormous help if other people are making sure they are safe, reading labels with them, double checking and ensuring. 

For the ones you love, be a part of the ongoing learning curve, read the labels, check the internet for questionable contents and uncertain products. Don't be afraid to call a company about their product. Not only will the Celiac in your life be thankful for the help, you will learn a thing or two about the things you eat--and that can only be beneficial. 

Stop feeling sorry 

This is last thing I'd like to recommend to help make someone with Celiac's feel less bad about their condition, even though it may sound rather harsh.

Stop feeling sorry for them.

It will happen that a Celiac joins you in an restaurant or meeting, and won't be able to eat anything there. It's bad. They know. You know. The staff knows. However, stop apologizing. Stop saying, "Sorry you can't eat here." The more they're made aware of the fact that they are in an "hostile" environment, the more they feel like an outsider, high maintenance, or even a freak. 

The best solution to that problem, obviously, is to plan ahead. But not everybody always knows every time. 

It'll take some patience and practice to accept the fact that not everyone can always cater to someone with Celiac's. Maybe the venue can be changed, or there are some fresh fruits and vegetables to enjoy in the house, but sometimes you're stuck where you are. And that has to be okay. The person with Celiac's has to accept it, and the rest has to stop feeling sorry, so everyone can move on.

Next time everyone will know better, hopefully. 

Conclusion

Gluten free lifestyles aren’t for everyone. But for some, there’s simply no other option. 

It’s easy to be gluten free. Anybody can do it. But it’s an entirely different thing to be dependent on a complete gluten free way of living, which the partner, friend or family member needs to understand for the sake of their loved ones. There’s simply no grey zone.

I have learned about the importance of working together on this, whether I need it for myself or not, and I’m trying to do my part by reading labels, by asking servers, and by learning to cook in a different way then I grew up with.

Patiences, acceptance and understanding are the keys to a successful relationship with someone that’s diagnosed with Celiac’s disease.

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Comments

Sep 17, 2013 10:00pm
arcticsunburn
Great work, iNachyl. Engaging read.
Oct 30, 2013 12:46pm
Case1worker
Interesting- I have sufferred from Coeliac disease (anglicised spelling) since I was a baby- therefore 50 years plus and things are so much better in some ways than when I was a child but worse in others- there is so much unncessary flour in food products- even ice cream.

I was ill last year through eating grated cheese from the staff restaurant! It came in a bage with some flour in to stop it clotting and it clotted in my portion!

Glad to see that you are supportive but dont let it take over your lives- ;live love and enjoy the pleasures of this world and keep smiiling
Oct 30, 2013 5:06pm
DaniWright
Excellent article. Thank you. I believe gluten is bad for everyone. What's so strange is my situation is like yours with a twist: I started the gluten free lifestyle as a diet choice, and my girlfriend ended up changing to support me. After she changed, we found out she had been a celiac all along! So weird.

We've dropped tons of weight and our skin is much healthier. I used to be blotchier and we'd get zits a lot more, but since we cut gluten they're all gone. It's amazing what gluten-free diets can do for even non-celiacs.
Oct 31, 2013 2:51pm
disha31
Great post
Nov 3, 2013 1:49am
Fran5050
Thank you for this article - more support is exactly what we need. In a restaurant recently I asked for advice re gluten free options. I was told "we don't use much sugar"! Doesn't exactly inspire confidence.
Thanks especially for explaining the maltodextrin thing. I didn't realise that wheat and corn could be processed into this product so your explanation is extremely useful.
Nov 4, 2013 12:07am
Yindee
Thank you for confronting the problem. Very thorough and considerate of you. It is a pity that restaurants are not sympathetic to this problem. But watch out for gluten free ingredients that may not suit your blood type. Check out the binders like guar and xanthan gum because they can behave like gluten and gum up the works. Make sure people can tolerate maize/corn as an alternative. If in doubt, eat for your blood type and remove any wheat, rye, barley and in some cases oats that you as an individual do not tolerate.
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