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Wednesday, January 27, 2010

5 Important Questions for Celiacs

I am dead tired. It could be the season, or the moon or maybe just the way work and life are overflowing like a suitcase that simply won't shut. Not to be melodramatic or anything, but life can be tiring. Sometimes I get so caught up in the cycle of the week, the month, that I forget to take time to consider where I am in my life, the steps I've taken to get here, and reflect on the kind of choices I'm making. While this speaks to almost every aspect of my life, I've been mulling over what I consider to be some of the most important decisions surrounding my life as a person with Celiac Disease.

It's so easy to slip down into a rut and take your everyday life for granted, especially if your everyday life consists of a very important, yet seemingly mundane choice; eating to stay healthy. I've been thinking a lot lately about when I first made the choice to go Gluten Free and the subsequent mini-decisions that made up the whole package of a Celiac diagnosis. Some decisions didn't require any thought while others I am constantly shifting my thinking on. This list is both for the newly diagnosed and seasoned veterans, written to hopefully strengthen resolve and encourage general thought. Isn't that what a blog is all about? The following questions are topics I think about every once and a while and reflect on how my answers either shift or stay constant.

5 Important Questions for Celiacs

 1. How committed am I to the Gluten Free diet?

I think this should be the very first question any Celiac asks. It may seem basic but with all the chatter about "cheating" and "testing" what it's like to eat a bit of Gluten I think it's an important decision to revisit. Part of the struggle for a lot of new Celiacs is a concern about "slipping up" and ingesting Gluten. It is this possibility that keeps some from committing to the diet. Consider your life up until your diagnosis. Were you sick, tired, in pain? Did your gluten-filled diet detract from your overall quality of life? I'm not lying to you when I say I had no problem whatsoever going GF - not after living with pain and health issues for almost my entire life. When I considered how a "normal" diet affected my life, learning about Celiac and going GF was a relief. It may be a more difficult decision if you do not manifest many outward symptoms.In this case I might suggest reading up on articles like Dr. Mark Hyman's to fully understand what the consequences of Gluten are.

2. How will I find closure?

Closure is usually something we talk about in reference to the ending of relationships. And we still are. Your relationship with culturally normal food. Food is dominant in almost every aspect of our lives - in the workplace, get togethers with friends, holidays and the ubiquitous familial entrenchment of "traditional dishes". You must allow yourself the time to mourn. Your life is changing, you must acknowledge this. However, this mourning period really shouldn't last...well, your entire life. There has to be a moment when you literally say "Enough, this is my life, my choice and it is what's best for me. Being healthy is more important than twinkies". Or Grandma's apple pie, or that pizza you got on your honeymoon.

I had one random moment of mourning and, unfortunately, it happened in a grocery store. In public. I was shopping with Alex early in my GF switch and growing frustrated because I didn't feel that I could eat anything due to my inflamed state. I happened to glance down the heavily Gluten-laden cracker aisle and my eyes rested upon a giant display of some wheat-filled snack I probably wouldn't have even wanted if I could eat it. I broke into hot, stupid tears and cried all the way home thinking deeply about mozzarella sticks and fluffy sandwiches. And then it was over. And I moved on. And that's it. It had to happen so I could be where I am today. So I could move on to discovering new foods that satisfy me without endlessly comparing them to Glutened versions. The end.

 3. How fastidious will I be?

Listening to people all over the internet has taught me that there are many subtle levels of Gluten Free living. There are some who share their kitchens with Gluten-Fiends, others who won't bathe with anything containing wheat, and still more who feel comfortable picking croutons out of a salad and eating the greens. What individuals need to decide is what level of Gluten Free lifestyle is right for them. In the beginning I would not eat anything with a label proclaiming 'Made In A Facility Which Processes Wheat Products'. Then I started buying things that stated 'Good Manufacturing Processes' separated my GF food from these Glutened products. And slowly but surely I've started buying things that are processed in wheat facilities - but only from Whole Food's 365 brand or other companies I have a little faith in. It may be naive, but I'm feeling good about it.

Your immediate choices are not set in stone, they can fluctuate with your level of comfort. In some restaurants you may feel the need to spell everything out to the waiter while at others you may just rely on the GF menu to do the talking. It's not my business to tell you what is right for you, but I urge you to remember that your interaction with waiters and companies may become their impression of the GF community. If you say it's okay for your fries not to be in a dedicated fryer they might believe that's right for everyone.

4. Where will I turn for information?

There is a bottomless pit of information on the internet. Literally, I've seen it. While I think the internet is a great place to learn, share and generally contribute to a community I think we also need to use a little caution. Just because someone puts something in writing and posts it to the world wide web does not make it true. Further, just because someone writes something about Celiac Disease on the internet does not mean it's right for you individually. The internet is not very discerning, hell, they let me contribute!

As a blogger, I feel great responsibility for the things I post. I put in a lot of research and try to be as inclusive as possible. But I also hope that my readers take responsibility for themselves and make informed choices. I believe informed choices are developed from the disovery of a variety of sources, not just one. Staying on top of new developments and studies is part of staying healthy, something I know we're all striving for.

5. How will my Celiac diagnosis affect my life?

Celiac Disease infiltrates almost every aspect of your life for two reasons (probably even more though). 1. Eating is a huuuuuge part of life. Where and what you eat often have a lot to do with where you go and what you do during the day. 2. Celiac Disease may also compromise your health, restricting the activities you can participate in.

I bring this point up because I didn't study abroad. In my photography program nearly everyone spent the summer abroad in Italy, taking photography and architecture classes. Beside the financial factor, I didn't go because I pictured myself alone in the village square, unable to find food I could eat, being a burden and generally finding life atrociously difficult. Frankly, I regret this decision. I imagine it's even harder for people with kids. The internal monologue over a possible sleepover for a young kid with Celiac must be a nightmare. The decision I've finally settled on recently is pretty simple - anything is possible. It might take a touch more planning, a little frustration and a pretty penny - but if it's something you want to do, isn't it worth it? I don't think Celiac Disease should come between you and anything - except Gluten. If you make the conscious choice to never let Celiac Disease be a barrier you might find that you feel a whole lot more positive about your diagnosis.


  1. Great post! My friend and I were just talking about my commitment to eating gluten free and how I get frustrated when people assume it's a fad that I won't be sticking with for the long term. Personally, my Celiac test came out negative, yet the consequences of eating gluten are so bad for me that I don't even think of the possibility, now or ever. On the other hand, I have a friend who was diagnosed with Celiac disease years ago, and he doesn't really have any outward symptoms, so he "cheats" more often than not and is pretty lax about what he'll eat. If I were him, and didn't feel any negative consequences from eating gluten, would I do it more often? Well...knowing me, probably not, because I'm a health freak and would be afraid of the internal damage. But you never know. :)

  2. This is wonderful! I am completely committed to the diet and have a good amount of closure - the only things I really miss are the things I never got to try. I know some people don't stick to the diet but I can't really understand why. It lets you be healthy and prevents much worse things down the line. I completely agree with your last sentance as well. Celiac does not have to be a barrier. It can be a way to push you to make more interesting things.

  3. Hey Iris, I think it's great that you're making such good decisions even witout a positive test. I think there are a lot of people who would be unable to commit without testing positive - to their detriment, because we know how shoddy tests can be. If more people listened to their body, like you do, I think we would be in a much better state healthwise in this country.

    Hey Lauren! I definitely hear you, I do regret the things I never got to try. I think it has made me more willing to try things though - since I'm limited I want to try and enjoy as many things as I can, even if it's something I'm not sure I'll like. You've got such a great attitude, I know you're a source of inspiration for a lot of people :)


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