Potentially unpopular opinion, but I am SO glad that eating gluten free has become trendy. Why? Because it has brought so much more awareness to Celiac Disease. There are more gluten free food products in the grocery stores. Restaurants are clearly labelling their menus with gluten free options. And best of all, more people are being tested for/diagnosed with Celiac than ever before.
And don’t get me wrong. It’s not that I want a bunch of people to have Celiac disease. Quite the opposite. Rather, in my case, it took years of suffering through unpleasant symptoms to receive my diagnoses. YEARS. And as soon as I began eating gluten free, I immediately started feeling better. So, my wish for the Celiac’s of today is that it doesn’t take as long to get diagnosed. And to anyone out there who thinks they might have Celiac Disease, I want to share my diagnosis journey, in case it can help others out there who are struggling.
Symptoms of Celiac Disease
What makes Celiac Disease difficult to diagnose is the broad range of symptoms linked to the disease. Everything from digestive distress and seasonal allergies to mood disorders, weight loss and hair loss. Celiac, when left untreated, prohibits the body’s ability to absorb necessary nutrients. This lack of proper nutrition (despite eating a well-balanced diet) is what leads to so many of these unpleasant symptoms.
My journey to being Diagnosed with Celiac Disease
I will always remember the year I turned eight years old. My family moved from Seattle to Portland. I started at a new school. Oh ya, and I started getting a lot of headaches. Like a headache every single day. Despite dealing with digestive issues as a young child, these headaches were the first clue that something was wrong.
Unfortunately for me, the year was 2000 and nobody knew what gluten was. And people definitely hadn’t heard of Celiac Disease. Even if they had, making the connection between headaches and Celiac Disease, or diet in general, was a stretch.
These headaches continued, daily, all the way until I was diagnosed with Celiac at the age of fifteen. Yes, we’re talking seven years. During that time, I tried everything. I was prescribed reading glasses in case the headaches were due to eye-strain. I was referred to a neurologist who laughed when I told him I had gotten a headache every day for many years. Not the response you want from a doctor. I was referred to a therapist to learn stress management techniques in case stress/tension were the reason for the headaches.
I was also conveniently diagnosed with something called “chronic everyday headache syndrome” and prescribed medication. The medication didn’t work and I was later diagnosed with “medicine overuse syndrome” by a doctor who thought the medicine was causing my headaches.
It was a nightmare. No matter what I tried, the headaches would not go away. While the link between Celiac Disease and headaches is not entirely clear, studies have shown that headaches, including migraines, are over twice as likely in Celiac patients, and are often one of the earliest signs of Celiac Disease.
As I got older and my untreated Celiac Disease continued to progress, I started experiencing additional symptoms beyond just headaches. Enter: fatigue. I was in elementary school when I first started experiencing signs of Celiac Disease, and it wasn’t until high school that I was diagnosed. To anyone who has experienced chronic fatigue, you know how hard it can be to make it through the day. For me, it would usually set in shortly after lunch (likely due to eating a sandwich or other gluten-filled lunch) and continue through the afternoon. If you think concentrating in chemistry class is hard, try doing it tired with a headache. Not fun!
The link between Celiac Disease and chronic fatigue is also still being explored. But, as I mentioned above, Celiac hinders the body’s ability to absorb nutrients. Low nutrients = low energy. So, if you are somebody who suffers from chronic fatigue, despite getting adequate sleep, beware that your body might be trying to tell you something.
I used to joke in middle school that I knew what I was going to look like six-months pregnant. Why? Because I would start the day with a normal looking stomach (after not eating all night). Then, after each meal, I would get a little more bloated. By the end of the day I had a nice round stomach, usually accompanied by a stomach ache.
While bloating and stomach pain are understandable symptoms of Celiac Disease, remember, most of us had not heard of Celiac Disease in the earlier 2000’s. Plus, the daily headaches continued to be the most obnoxious of my symptoms so I didn’t give a lot of thought to the bloating. Little did I know the two were connected.
Unmanaged Celiac Disease damages the lining of the small intestine. This, in turn, disrupts the digestive process. Poorly digested food entering the large intestine can lead to painful bloating and gas. While this is a common symptom of Celiac Disease, bloating and stomach pain can be a symptom of many other diseases or food allergies, making it tough to diagnose the root cause.
There are a lot of reasons that people living with undiagnosed Celiac Disease experience anxiety. For one, the stress of the recurring, unmanaged symptoms is enough to induce an anxiety attack. Further, more and more studies are proving the link between gut health and mental health. You may have heard of the gut-brain connection. In short, our gut and our brain are connected by millions of nerves. Therefore, the bacteria in our gut, as well as inflammation caused by an unhealthy gut, can have a direct impact on our brain health.
An unhealthy gut, including one suffering from undiagnosed Celiac Disease, has been linked to anxiety, depression, mood swings and memory problems.
To me, I figured anxiety was just a normal part of life. Again, I was more concerned with treating my chronic headaches and fatigue. I didn’t realize 1) that there might be a treatment for ny anxiety or 2) that all of these symptoms might be connected.
I’m forever grateful to a family friend who suggested to my parents that I get tested for Celiac Disease. She herself had been diagnosed and recognized a lot of the symptoms I was experiencing. The year was 2007, and honestly, I still had never heard the words “Celiac” or “Gluten Free”. My parents took me to see an Endocrinologist who ran a blood test that immediately confirmed my diagnosis. In people without Celiac Disease a normal Tissue Transglutaminase IgA (tTG-IgA) rate is below 20 and mine was sky high at 349 points. My doctor also performed an endoscopy to confirm my diagnosis and assess disease progression.
Looking back, the day I got this diagnosis was one of the best days of my life. At the time it was scary because I had never heard of Celiac Disease. But to this day I’m so grateful 1) that I finally received a diagnosis and was able to start my healing journey and 2) that I was diagnosed with something that I can manage through a healthy diet and lifestyle.
Adjustment to Gluten-Free Living
Let me just say, the gluten free food of today is SO GOOD compared to what it used to be. The weekend after receiving my diagnosis my parents and I went to four health food stores, buying up every gluten free product we could find (there weren’t a lot at a time). We raced home, opened everything up, only to discover that the $10 loaf of bread crumbled into a million pieces upon touching it. Great.
However, within a few days I didn’t care! The relief I felt after going gluten free was literally immediate. The first full day of eating gluten free: no headache! I could cry I was so happy. In the coming days my energy levels increased. My bloating subsided. And to my biggest surprise, after a few weeks, I noticed I wasn’t as anxious all the time.
And, the best part of all: this was a disease I had complete control over. No more medication. Sure, no more pop-tarts, but hey, I could manage this on my own! Through diet. To this day I am so grateful that I was ultimately diagnosed with Celiac Disease as opposed to something else.
If you are suffering from a smorgasbord of painful symptoms and suspect it might be celiac disease, go get tested! It’s an easy blood test and the immediate relief you will feel after a diagnosis will amaze you. And worst-case scenario, you confirm it’s not Celiac Disease and you are one step closer to getting to the root cause of your symptoms.
If you’re newly adjusting to a gluten free lifestyle check out my Ultimate Guide to Living Gluten Free (and Loving it!). As someone who has been gluten free long before it was cool, take it from me, it’s pretty easy in today’s world! And, like me, you might enjoy that it forces you to slow down and think twice about what you’re putting in your body.
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