I thought as the year winds down this would be a great opportunity to wax nostalgic and look back on what being gluten-free has really meant to me, the changes to my health, and the changes to the gluten-free landscape.  These are my personal realities that I have experienced as I navigated along my Celiac journey…and believe me it has been and still remains very much a journey.

As is the case with many Celiac diagnoses, I was diagnosed only about twelve years or so ago after more than twenty years of misdiagnoses.  It was always a case of having a funny tummy or acid reflux or a really fast metabolism that no doctor or medicine could seem to fix.  The worst part was not knowing when I would have a reaction to gluten because I had no idea it was the gluten that was the root of my problem – and believe me there were some very interesting situations.

I have to be completely honest, I had not even heard of Celiac disease before my diagnosis.  Gluten meant nothing to me and it was like the first day of school all over again when I found out I actually had Celiac disease.  It was a very different time for Celiacs just a decade ago.  Resources were not that easy to come by, forget about really great tasting products, and support…we’ll good luck with that.  Cue the violins…It was actually a very lonely beginning to my gluten-free journey and a lot of the learning I really had to find out for myself.  It was definitely a period of trial and error as I struggled to get a handle on this disease.  I also happened to become hyper-allergic to shellfish around the same time I was diagnosed Celiac so my eating habits had to undergo a massive re-vamp in a very short period of time.

Reality #1: If you think that you’ll lose weight, think again.
I went gluten-free out of necessity – there just was no other way to lead a normal life as a Celiac without it.  Now, throughout high school and college I was wonderfully thin and the sample-sized racks at stores were my best friend – I mean being a size 27/28 waist and weighing about 150 pounds, the world was my oyster – or so I thought.  What I didn’t realize is that, while perfectly healthy, I looked somewhat sick – I was actually too thin for my age and height.  I thought it was fantastic that I could eat whatever I wanted in any quantity and never gain a pound – never.  I ate like food was going out of style – I simply loved food and once college and grad school came about, let’s just say my eating habits were less than ideal.  I just thought I had a super-fantastic magical metabolism and didn’t ask any questions.  Others, however, did start asking questions – like Did I have an eating disorder?  I can’t blame them for being concerned but I would actually get angry when constantly asked and I knew I was doing nothing out of the norm.  Little did I know that my body was not absorbing nutrients correctly and I was severely damaging my digestive system without even knowing it.

So fast forward to removing gluten from my diet but replacing gluten-filled foods with their gluten-free counterparts.  Okay, at the time of my initial diagnosis there was definitely a lack of good gluten-free products but beggars can’t be choosers and quite frankly I was happy with mediocre bread and pasta vs. nothing.  However, the doctors failed to mention that gluten-free replacements often have twice (or more) the calories and carbohydrates of their gluten-filled counterparts.  This coupled with the fact that once you remove gluten from your diet and you begin to once again absorb nutrients correctly EVERYTHING changes.  Add-in the introduction of more and more delicious gluten-free products hitting the market and it makes for a very weighty combination.  Remember that super slim guy who could eat whatever he wanted?  Well, he fast became a rather large (read gained about 50 pounds or so) version of his previous self.  Worst of all it seemed to just happen without any real warning.  Lesson learned.  It fast became all about moderation and becoming more cognizant of product label details vs. just checking for gluten.

Reality #2: It’s Your Life, Live It.
Perhaps the most common thing that I hear when people are first diagnosed it that they’ll never eat out again.  Can I understand their thinking – absolutely!  It is overwhelming (to say the least) when you suddenly have to change your lifestyle – particularly after decades of doing whatever you wanted.  The good news is that with increased diagnoses comes increased awareness (and yes, we still have a way to go).  I remember trying to explain what it meant to be Celiac when traveling or eating out and getting blank stares.  Now when I dine out more often than not when I say I cannot have gluten I am met with Oh, you have Celiac?  Does this mean that I am ever complacent?  Nope.  I still go through my whole spiel of gluten and shellfish requirements each and every time I eat out even if I have been to a place one hundred times.

I was always a traveler and have been jetting around the globe since I was a toddler so naturally when I was diagnosed I wondered what this would do to my love of travel.  The good news is that it doesn’t stop me in the slightest.  I still go where I want, when I want and have never gone hungry in any part of the world.  Have I had to make concessions – of course – but gluten-free and Celiac disease have become more and more recognized around the globe so things are most definitely getting better.

Reality #3: It’s a pretty delicious gluten-free world out there.
The gluten-free product landscape has truly exploded over the years since my diagnosis and there is now pretty much a gluten-free replacement for anything you could want.  Over the past few years alone there has been an explosion of gluten-free companies and more mainstream companies launching new gluten-free products.  I no longer have to feel like a culinary outcast because I can now have a gluten-free version of some of my favorite gluten-filled options.

It’s also great that some more mainstream companies are now providing gluten-free products but I absolutely love that there are more and more smaller start-up type companies out there that are crafting more artisanal gluten-free options.

A trip to my local supermarket that once yielded perhaps one or two gluten-free items now features an entire aisle of gluten-free goodies.  Gone are the days where I would have to visit several small, out of the way stores to pick up a few items.

Restaurants are also catching on and it is nice to no longer be relegated to the special category that was once met with stares and confusion.  Even the most major of chains either have a gluten-free menu or provide allergen information to their patrons.  There has also been an explosion of restaurants offering at least one or two dedicated gluten-free items for their guests as well, in my opinion, an increase knowledge on the part of management and service staff to not only deal with Celiac but food allergic diners in general.  Is anything ever going to be 100% – absolutely not and we as Celiac or food allergic (or both) diners must still remain diligent in our asking of questions and getting staff to understand the importance of what our requests mean.  Even if I am a regular at a particular locale, I still go through my celiac and allergy spiel to add, at least in my own mind, an added level of comfort when dining out.

Reality #4: Gluten-free is not a fad, it’s a way of life.
This is a particular sticky point with many Celiacs, myself included.  While it is certainly great that gluten-free has really mainstreamed there is a big difference between those who are gluten-free by choice and those of us that are gluten-free out of necessity.  Don’t get me wrong, if you don’t have Celiac disease or a gluten-intolerance and want to be gluten-free by all means please do so.  I am a firm believer in doing whatever makes you a happy camper.  The problem lies with many people labeling gluten-free as a fad, because for many of us it is a required way of life.  This was bound to happen given that gluten-free has essentially mainstreamed now and people are talking about it more and more.   And this is fantastic because the more people talk about it the more front of mind it becomes with the larger population.  It is a double-edged sword because, as is the case with any celebrity, it comes with the truths and the half-truths.

My truth is that I have a disease that can only be corrected by the exclusion of gluten from my diet.  If I could eat normally again I would do it in a heartbeat.  Do I miss being able to eat absolutely everything (and I mean everything) that I want – sure do.  Do I miss the constant pain and health issues I was subject to for more than twenty years?  Absolutely not.

Reality #5: It does get easier.
In the more than twelve years since my diagnosis I have gone from complete and utter confusion to well seasoned Celiac in a relatively brief period of time.  It is amazing how quickly you completely change your lifestyle and have it become the new normal.  I am living proof that someone can go from zero to relative expert over time.  Will it be a challenge?  Yep.  Will there be times you’ll make mistakes?  Yep.  Will you sometimes feel like there is no way you’ll be able to live a full life?  Yep.  I felt all of those emotions and more.  I’ve fallen on my face on this journey and still have hiccups that occur.  Hey, it’s just how life goes sometimes.  So when you are having a tough time or feel like you’re all alone on this journey look around because there’s 1 in 133 that is in exactly the same boat.

I don’t think I have ever really chronicled my experience as a Celiac in a single thread like this before and I found it to be actually rather therapeutic.  Are there way more than five personal realities for me, absolutely, but the five I discussed are my main ones.

Please feel free to comment and share some of your own personal realities.  While some realities might be true for many, we know that Celiac affects people in different ways.  The one thing that I do know is the same for all of us is that we are a pretty tight knit group and without my Celiac diagnoses I would not have met so many fascinating people out there — each of whom bring a great uniqueness to their approach on living life gluten-free — and for that I am truly thankful.

4 responses on “Living Gluten Free from a Celiac P.O.V.

  1. charlemeine zemelko says:

    I too am gluten free, shellfish, soy, aspartame, nuts and dairy free. It’s awful trying to eat in a restaurant, seems everything is soy based, went to Red Lobster thinking the fresh catch of the day was safe(salmon) it too was soy based…they offered to rinse it off, but you and I know that doesn’t work….Had a salad with olive oil and vinegar and had to smell all the delicious fish. I just find it soooo difficult.

  2. Gluten Free Mike says:

    Multiple restrictions make it more difficult. My shellfish allergy actually worries me more than gluten as it will send me into instant anaphylaxis even from cross-contamination. I find chains to be challenging sometimes because many things are pre-prepared or marinated so there is no way to get something more simple. I’ve had places only comfortable to serve me a salad and while not ideal it is reassuring that at least they aren’t willing to take a chance. Hang in there — I know it’s tough when everyone around you is indulging and you cannot.

  3. Hi Mike,
    Nice write up. I’m in year 4 since my diagnosis.. and I pretty much agree with your synopsis…. I’ve started to become a bit paranoid of eating out though. I just don’t trust too many places, it becomes not worth it.
    I still get mildly upset at those that also mention they are gluten free and then grab a croissant… 🙂 We don’t have that choice.
    I hope that one day we’ll be able to know for sure if our guts have healed, that one is still something I think about.

  4. Gluten Free Mike says:

    I completely understand about eating out Doug. It often does take a tremendous leap of faith and trust. I have also had non-Celiacs ask me if I “fall off the wagon” every now and then. At first I was taken aback but they said they knew people that would, for example, eat birthday cake or sometimes eat gluten. My response is always that there is truly nothing in the world that is worth the pain and damage that consuming gluten would cause. So while frustrating, I use it as a chance to educate them about Celiacs needing to be GF as their prescription and there is no grey-area when it comes to living a GF life.

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