Discovering Celiac

I've always been relatively healthy. And I don't even so much mean in the sense of eating unbelievably well (I didn't), or growing up as an athlete (I wasn't). But more so meaning that my body has always just seemed to be pretty low maintenance. I've never had any food allergies. I'm not allergic to poison ivy. I don't get headaches, stomach aches, or colds, and I can count the number of times I've seen a doctor or gone to the hospital in the last 10 years (outside of a physical) on one hand. I think a lot of it is mindset, a lot of it is genetics and upbringing, and I also believe luck plays a factor.

So you can imagine how shocked I was when I received a phone call from my doctor's office notifying me that my test results came back, and my blood tested positive for a gluten allergy. It's been 5 months now, and I've since been diagnosed with Celiac Disease, changed my diet, taken follow up tests, and met with a gastroenterologist and nutritionist. I've learned a lot, but am very much still figuring it all out week by week.

I'm now mainly writing this post not only to teach others about Celiac (I knew what it was, but really didn't know what it was before this experience), but more so to get people thinking about getting more in tune with their bodies, their diet, how it makes them feel day to day, and realizing that the way you feel might not "just be normal" - that's what I thought, until I found out I was allergic to something I was eating all the time.


Why I Got Tested

The majority of people that have Celiac Disease have some obvious gastrointestinal symptoms: gas, vomiting, diarrhea, nausea, pain in their abdomen, etc. I didn't have any of that. When people ask me "what made me get tested", my only true answer is "things just weren't adding up".

You see, I didn't know that it was Celiac. I actually didn't know if it was anything at all. But what I was experiencing was basically feeling not as recovered as I believed I should. I would wake up in the morning some days, and my legs would feel like I literally got run over by a truck. And I'd take a minute to think back on what I did as a workout the day before, and sometimes it didn't matter if I ran 10 miles or had a rest day, the possibility of feeling that way was still there.

At that moment of waking up, the thought of going to workout or run seemed impossible. But then I'd stand up out of bed, get some blood flowing to my legs, drink coffee, eat breakfast, start going about my day, and eventually I'd start feeling "normal".

Occasionally on mornings when this was most severe, I'd make my way from my bed to my couch, and start googling things like "food intolerances", and "vitamin deficiencies". I'd start looking into doing blood tests like InsideTracker, but then there are just so many different directions you can go with it, and they're all hundreds of dollars no matter which direction you go, so eventually I'd make some kind of justification, and just go back to my day.

But then I really started thinking about it after leaving my full time job in January. All of a sudden, I was spending less time sitting in a chair each day, and more time making my own meals, foam rolling, icing, and just becoming more in tune with my body. So when I say "things weren't adding up", I mean that with all this new time and dedication towards my body and health, I still wasn't feeling any better waking up in the morning. So one day I called my doctor's office, and basically said that I don't know if I have something like a gluten intolerance, or a vitamin deficiency, or if maybe I'm just crazy, but I want to try and figure this out, and I don't know where to start. They ended up taking blood and submitted about 10 tests, with Tissue transglutaminase IgA being one of them.

Timing is a funny thing - because another variable that played into me getting tested and trying to take a deeper dive into what it may be, was that at the time I was randomly reading "Gut: The Inside Story of Our Body's Most Underrated Organ" by Giulia Enders (which I highly recommend). What's random about it is I really wasn't trying to do research into the area, I just saw it in an Amazon book store and grabbed it, AND it's also random because... I really don't read. It's something that this year was a part of my new years resolutions, and I started this one up in February.


Test Results

My test results came back overwhelmingly positive (for Celiac). Basically, Tissue transglutaminase IgA tests the amount of antibodies present in your blood. Someone that is not allergic will have a test result of <4.0 U/ml. A positive reading is >10.0 U/ml.

My test results... were a whopping >100.0 U/ml.

At first glance, that just looks like a big and obvious number, but it really didn't mean too much to me other than that. But as I looked more into Celiac Disease, and learned from the gastroenterologist and nutritionist I'd later see, I was basically spot on with my "allergy or vitamin deficiency" thought.


What is Celiac Disease?

Again, I'm not an expert at this. But basically, in your small intestine there are "finger-like tentacles" called villi. The villi line the wall of your small intestine, and reach out to grab and absorb nutrients. When someone with Celiac Disease ingests gluten proteins, their body creates an allergic response that ends up damaging (or flattening) the villi, making it harder for the body to absorb nutrients. So I could be eating great, nutritious food all day long, but as long as I was complimenting it with things like pasta, bread, and beer, my body wasn't capable of absorbing those nutrients.

Celiac Disease is an allergy to gluten. Gluten is a protein found in wheat, rye, barley, and oats (not naturally, but oats are almost always processed with wheat, rye, and barley).


Looking Back

It's crazy to me to think that, I could have so easily not picked up the phone that day to call my doctor, and I'd still be carrying on not knowing that I was doing my body a disservice with what I was eating. I like to consider myself athletic, and reasonably competitive in OCR, but will also admit that my whole life isn't dedicated towards training and being an athlete. My diet could have best been described as a cross between "chooses cleaner options" and  "an an athlete that needs carbs to burn". I definitely ate bread every day, pasta 1+ times per week, protein bars with gluten, oatmeal, granola bars, and drank my fair share of beer. And then even though I'd spend time on the things that supposedly combat inflammation, the food I was eating made it impossible for any recovery I was doing to actually help.

Looking back, so much makes sense. This is the mental cycle I'd often get in:

1. Get a burst of motivation, decide I'm going to add more X to my training.

2. Start adding workload to my training.

3. Feel beat up, wonder why I'm not able to handle extra workload.

4. Get stuck between thinking "I don't do enough to be at the level I want to be at", and "maybe I'm doing as much as I can do, maybe I'm underselling myself".


Moving Forward

It's been nearly 5 months now since I switched to a gluten free diet. I will admit, I'm not necessarily eating exponentially "healthier" as a result. I have a new favorite gluten free bread, I eat gluten free pasta, and I drink cider and cocktails instead of beer (although it has taken away a lot of the mindless snacking and occasional dessert). I took a new blood test recently, and my test results showed a 6.7 U/ml. This is still considered a "weak positive", but it's well below where I was at prior, and my doctor believes this was a great result and is likely still on it's way down.

I didn't instantly feel better, but now looking back, I can feel the difference. I feel stronger, less fatigued, and my mind feels less cloudy. My day to day diet and routine hasn't changed dramatically - I got it down pretty quickly and hardly think about it most days. But each time I go into a new situation, I have to kind of feel it out and learn what to do. For example, going to a house party and not knowing the ingredients in the food in front of me, and traveling abroad. But I'm figuring it out, day by day!


Know Your Body

If you're still reading this post, my message to you is this: take an honest assessment of how your body feels each day. Is it normal, or is it just "the normal". I think all too often, we decide that however we're feeling is just the way we're programmed, and we don't ask questions. And if we do decide something is off, our society turns to medicine to fix the problem, instead of turning to things like diet, stress, and other variables to find the root of the problem.

I am not saying that everyone should go get tested for Celiac Disease, and being someone that has to really have something wrong with me before I go to see a doctor, I'm not advocating for more trips to your primary physician either. But what I am advocating for is self awareness. Try to dig deeper than just what's on the surface. As athletes, we spend a lot of time pushing our bodies. Let's make sure we're also taking time to listen to them!


If you have any questions at all, I would seriously love to try and answer them for you, whether it's about Celiac, how I was/am feeling, or a situation you might be in. AND, if you're someone with Celiac Disease and you have advice or recommendations for me, I'd also love to hear from you. Like I said, I'm still figuring this out and could use all the insight I can get! Shoot me a message on Instagram @spencermahoney, or Facebook @spencermahoneyocr.

Spencer MahoneyComment