How did I even know that I have celiac disease?
The answer to the first question that comes out of curiosities of the people who I tell about my condition.
Happy new year 2024, dear reader!
I am starting this blog with a hope to share my experience, learnings, hacks, struggles and my approach (both dietary and mentally) towards living with Celiac disease.
One fine fall morning, I woke up with rough eyes feeling lousy. The sun had just risen in the east, I guessed, looking out a west facing window. I dragged myself out of the bed, into the restroom to pee. As my eyes cleared up, and I was about to wash my hands, I felt puffiness on my hands. I judged the severity by making a fist. Pretty bad today, I thought. I looked up into the mirror while washing my hands, not surprisingly but worryingly, I noticed the redness in my eyes.
For the past six days, I had been having these issues and feeling low on energy. It was definitely time to call my doctor, which I had been procrastinating on that for the past 2 days. But that day, I was worried enough to make the call and book a time right after my morning tea. The appointment was still a few days away, but the worries weren’t.
I discussed with my dad, my brother and my uncle, all medical doctors. Although it wasn’t the first thing they said, or even the thing they said on the first call, but they advised me to get tested for celiac disease. My mother had it; puts me on the target too. Although, her symptoms were quite different from mine, but it could be any set of symptoms from the 200+ known ones. I was restless to find out, to know how my life might change o not. Alas, none of my “family” doctors live in the same country as me. I still needed my local doctor’s requisition for tests.
After a little wait, that seemed not so little, I visited my doctor. She wrote some tests to be done, but not the ones for celiac disease. Of course, at the time, I had hope that I could find something from those itself. Any diagnosis from those would be curable. And of course, those were all inconclusive.
On the next visit, I told the doctor about my genetic history and asked to be screened for celiac disease. She agreed. The results were off-the-charts, literally.
A little primer: the screening blood test is called Tissue Transglutaminase IgA Antibody (TT IgA) test. The test checks the blood for presence of antibodies or immunoglobulins (protiens produced by immune system). In simple words, the tests can tell whether someone’s immune system reacts to gluten or not.
In a healthy person, the result of the test should be less than 12, and in my case it was greater than 250. 250 is the limit of the testing method. Who knows how much more it was… double? triple? Well, your guess is as good as mine. It was quite clear that I had to stop eating gluten. However, it wasn’t clear that the symptoms I was having were related to this. The only way to know that was to be gluten-free for at least a month (ideally 3 months).
Another problem: TT IgA isn’t the ultimate way to confirm celiac disease. The conclusive way is to check if my immune response is deteriorating my small intestine. Celiac disease is an auto-immune condition: auto meaning that immune system is attacking its own body. This is the difference between gluten-intolerance or allergy and celiac disease. In a celiac person, gluten triggers the immune system to cause dystrophy of the villi of small intestine. Villi are microscopic hair-like structures in intestines to increase surface area for food absorption. Basically, less villi means less food absorption leading to malnutrition even on a normally healthy diet. As you may know, malnutrition can spiral out into multiple health issues.
So, how do I check my small intestine from inside? I can’t. A gastroenterologist can with a simple procedure called biopsy. The simplicity is for the doctor, the patient has to be sedated and an endoscope is put through the mouth into the stomach to look in. The doctor may need to get samples from the inside, kind of like getting a soil sample from the walls of a cave. When those samples are looked at under a microscope, we can see the condition of the villi. If all are good, then no celiac disease. If not, then celiac disease. Quite simple really, but not where I live. The specialist appointments in Canada take a while. In my case, I had to wait for an year. Thankfully, I didn’t have to wait for the biopsy to start gluten-free diet and feel better. So I did. This last sentence is a story by itself, for another time.
The next roadblock was that it is hard to know if gluten-free diet feels any better just by following it for a day. As mentioned earlier, it takes about 3 months to notice any difference. I kept at it for a couple months. It is quite hard to remember 2 months of daily bodily condition. I realised that I need to be more diligent about recording the symptoms and food. I made this little tracker on a single page. I made it into a habit by filling a box every day before bed.
This tracker made it obvious after a couple months that gluten was indeed having adverse affect. Eventually, after the biopsy, it was confirmed that I do have celiac disease. Now, it was time to adapt my life accordingly.
Thanks for reading!
For the reader, who has celiac disease, I will be writing about how I mentally approach this condition and how I have been staying safe. I hope you got some value out of this blog. It would help immensely if you subscribe.