How I Discovered I Had Celiac Disease When I Didn’t Have Digestive Symptoms

In July 2024, I found out I had Celiac Disease.

The diagnosis came as a shock and I remember feeling slightly faint while I was on the phone with my doctor. The shock came from the fact that I was not having digestive issues.

That being said, it wasn’t the worst news. I do love gluten-containing foods but, realistically, it could be worse. It’s not terminal and, as far as autoimmune diseases go, the treatment is straightforward; a strict gluten-free diet.

I had several tests done trying to find out what was wrong with me. The tests ranged from a CT scan to a HIDA scan to the gastroscopy that we were only doing to eliminate a digestive problem.

Asymptomatic Celiac Disease

I had been seeking help the last three years for a pain that floated around my back in middle of the night. The pain ranged from moderate to intense. It woke me up after only two or three hours of sleep and wouldn’t go away until I walked around for a while. Then, if I was lucky enough to get back to sleep, the same process would occur on repeat.

It’s not a stretch to say that sleep deprivation over an extended period of time feels like torture. Mentally and physically.

After the initial shock, I did worry that Celiac Disease might not actually be the cause of my pain problem. What if Celiac wasn’t the cause of this pain and it’s just another issue? Only time would tell.

Four days after starting my gluten-free diet, the pain was gone.

I can’t tell you how many times I’ve heard “Oh my god, I couldn’t do it.”

Guess what? You could and you would if you hadn’t slept properly in three years. The pain was tolerable. The lack of sleep was not.

The amount of research and education I needed was pretty significant. I’m still a little shook to know that most general practitioners don’t seem to have an extensive knowledge of Celiac Disease.

Getting a diagnosis is especially difficult in someone who is asymptomatic. How would you know to get tested if you don’t have digestive issues?

The Tests Didn’t Agree

My experience was more complicated than I expected.

My bloodwork after diagnosis actually came back negative, which was confusing. From what I learned, this can happen for different reasons, and it made me realize how much nuance there is in diagnosing Celiac Disease.

I was told the endoscopy is the “gold standard” to determine if a person has Celiac Disease. Mine was a gastroscopy, which means they took a biopsy of the upper intestinal tract. The pathologist then sent a report of the findings.

I’ve also had the genetic blood test done (along with my daughter) because, yes, this is a genetic disease. We both came back with the same genetic marker. She had the gastroscopy done as well and came back negative for Celiac Disease.

So, after I had the scope done and received the diagnosis, I asked my doctor if I should have the blood test done just to see what it says. That blood test came back NEGATIVE for Celiac Disease. There’s more to that but it just goes to show that I would have never known I had Celiac if it weren’t for my body telling me something was wrong in a very unconventional way.

Listen to your body.

The Gluten-Free Reality

Upon reading what seemed like the entire Internet, I saw there were many people that were absolutely devastated by their Celiac Disease diagnosis.

I am not one of them.

My pain was gone and I’ve never been on a special diet. However, I originally thought this could be the big “C” and had a lot of medical anxiety about what was wrong with me. I was relieved to have an answer and, while I adore pasta and flaky pastries, I am a problem solver. This was something I could fix.

If I were to list the most annoying thing about having Celiac Disease, it would be the cross-contamination and the general lack of awareness and education around it in Canada. Gluten cannot be consumed, even in small amounts, and heat does not kill it. The goal is absolutely NO GLUTEN.

Eating out at restaurants is a struggle and social events are also worrisome. This is largely where cross-contamination fits in. It’s not just gluten-free. Please don’t let the food touch any of that other food; this is the complicated part. Gluten is sticky and it has to be washed off.

I’ve gotten past what people think of me in the sense that you sometimes see people roll their eyes when you say you can’t eat something. I’ve even heard people say they “don’t believe in it” or “That’s a Trump thing”. Insert me smiling like a fox here. Maybe I’ll start writing these down and add them to a list of funny things I’ve heard later.

How Celiac Disease Changed My Relationship With Food

1. My Cooking Skills Improved

I thought I was a decently good cook but my skills in the kitchen have drastically improved. Learning about ingredients naturally expands your knowledge of food and finding ways to make gluten-free versions of your favourite foods is an adventure.

Adventure is the word I use when something might not be fun but it’s a discovery process and you will be better for it in the end. That’s OK! It’s an adventure! I say this a lot trying to stay positive.

2. I Don’t Eat Out Very Often

I don’t eat out unless it’s a quality-of-life issue. I think this is just a good thing in general. You spend more time at home cooking. You make better choices for yourself like not eating deep-fried very often.

You might be thinking I’m saving money, right? No. I spend a lot more money on groceries because gluten-free food is expensive. Yes, I could avoid processed snacks and foods but that isn’t fun. Meat and potatoes and vegetables (whole foods) are great but sometimes you just want something different. Also, gluten-free flour is extremely expensive and I like to bake.

The benefit (and sometimes the challenge) of being asymptomatic is that I don’t have an immediate physical warning system. I’m not going to suddenly feel sick or have obvious symptoms that tell me I made a mistake. That means I have to rely on education, preparation, and making the best choices I can.

This is probably where my approach may be controversial to some of you with Celiac Disease but I’m a social gal and I’m not going to watch everyone eat.

I’m going to do my damn best to choose the restaurant and make sure the server understands THE GLUTEN but I need to live my life so sometimes I’m going to take chances. This is a long list item so I might have to write more about this later.

3. Reading Ingredients Became Normal

This was never something I did before. It’s eye-opening. The stellar part of being in Canada with Celiac Disease is that food labelling is top notch. Major food allergens must be declared.

The general rule I’ve learned is BROW, which is Barley, Rye, Oats, Wheat (and Triticale). Side note: oats are gluten-free naturally but are often processed on the same equipment as wheat.

I look on the package for these ingredients and if they are there, I get a little sad and put the food back where I found it. Unless the packaging says “Gluten-Free”. Thank you to the companies that pay for the extra testing to do this.

The thing is, when you start reading ingredients, it can put you off from certain foods because it increases awareness of what you are putting in your body. Sometimes not. And that’s OK too. Do what makes you happy.

4. I Noticed Changes to My Body

One of the physical changes I noticed was less bloating. I’ve said I’m asymptomatic and that’s largely true but I felt less bloated when I stopped eating gluten. It’s possible I’ve lost some weight but I haven’t been tracking that so I couldn’t say for sure. Looking at older pictures, I definitely looked bloated and heavier leading up to my diagnosis.

Everyone knows how bloating feels. It’s a fullness that’s mildly uncomfortable, particularly in the belly. You think it’s normal when you’re female because of your cycle or eating too much salt so it’s easy to brush off.

I still get bloated sometimes but not like I was before. So, I suppose this was a symptom I wasn’t noticing.

Looking Back

Having gone much of my life eating gluten, I think I’ve had it pretty good. I’ve experienced food as a normal person and the awareness around Celiac Disease and gluten has progressed to a really fair place at this point. There are plenty of options compared to years ago and I was old enough to understand and research my own condition. There are plenty of children out there with Celiac Disease who might not have the same understanding as I do and that feels unfair to them.

I didn’t choose to have Celiac Disease, but I also don’t feel like it took my life away. In some ways, it gave me a reason to slow down and pay more attention to something I had always taken for granted: food.

I used to eat without thinking much about what was in front of me. Now I read labels, experiment with ingredients, and spend a lot more time in the kitchen. It’s frustrating sometimes and I’ve made many mistakes but that’s how you learn. It has also made me more curious and more appreciative of the food I make.

Having Celiac Disease is not always convenient. It can be expensive, complicated, and occasionally frustrating. But I’m lucky that I found an answer to a problem I had been dealing with for years. I got my sleep back, I got my energy back, and I learned something important:

Sometimes your body knows something is wrong before you understand why.

And sometimes, the thing that changes your life isn’t the thing that takes something away. Sometimes it’s the thing that finally helps you move forward.