Since when do you have celiac disease?
"I don't know", that's the answer you'll get from most people with celiac disease.
If you’re looking for my short answer, it’s “I don’t know”. If you still wish to read more, thanks! Thanks for understanding the more nuanced nature of almost everything. I may have had it since I was a toddler, a kid, a teen or after adulthood. Honestly, I do remember my dislike of food when I was a kid. More on that later.
For all medical conditions, there’s a time gap between three “stages”: beginning, noticing, diagnosis. Basically, some medical conditions can begin a long time before one notices it. Notoriously, cancer is one of those. People may notice it pretty soon if they go for regular check-ups. Honestly, most people don’t go for regular check-ups, at least not as regularly as we should.
Beginning
Celiac disease is one of such conditions that one can be living with without knowing. It can stay in an active state until one notices the consequences, like malnutrition. Part of the reason is that the deterioration of bodily state is gradual. It’s only when we compare days after a year or more that we see the difference. There’s hardly any difference in day to day living. Unless someone is hospitalised for poor health, of course.
Let me use a couple examples to illustrate the point. Once celiac disease is triggered in the body, it may reduce someone’s appetite slowly. Imagine just not feeling slightly less hungrier. Not very noticeable, is it? It may affect the quality of poop. Not something we pay attention to everyday, eh? Usually, the change is so gradual that it can be unnoticeable making the new feel normal.
I, personally, was always weak since childhood. Looking at food would create a feeling of fullness in my brain. I wasn’t lethargic, I was full of energy like most kids. I was a slow-eater and couldn’t eat as much as other kids.
It’s hard to say if it was the result of celiac disease because I got diagnosed when I was 29. It’s unlikely that I would have lived with celiac disease for 20 years without serious issues, but not impossible.
Noticing
There comes a time when one notices certain symptoms. But visiting a doctor is still not on the radar. In case of celiac disease, the initial symtoms are easy to dismiss as anomalies. Imagine how many healthy people have a day when they vomit. Now, compare that to the number of people with celiac disease. It’s easy to suspect one case over the other. Multiply that with the lack of awareness of celiac disease among the population.
One random vomit is probably not enough for an adult to visit a doctor. I might be subscribing to my own biases here. There’s no data around this. Experientially speaking, only if certain issues continue for a few days we visit a doctor.
In case of celiac disease, the symptoms can keep changing. It can be any of the 200+ symptoms one is feeling that day or week. It is so because it’s an auto-immune disease, and immune system has a lot of variability. Immune system isn’t completely predictable as it depends on lots of external/situational factors.
All in all, it’s hard to spot issues with one’s health in case of celiac disease. In many cases, the situation becomes so dire that one needs to be hospitalised before noticing an obvious issue. I had many ignorable problems with my skin, appetite, energy levels, ADHD-like weeks etc. They weren’t prominent enough to encourage a doctor’s appointment. It was only after the fact that I realised the connection; that the gluten-free diet has healed all of those.
Diagnosis
Once a person starts noticing the symptoms, the cause is usually not clear. We visit a doctor hoping that they’ll get to the root cause quickly. However, doctors will not reach the conclusion immediately. The general protocol is to rule-out treatable conditions before diagnosing a chronic one. (there are exceptions to this based on symptoms)
When I went to the doctor, my issue was inflammation in my hands every morning. She did some examination by blood testing to check for inflammatory markers, electrolytes and a few other things. On a follow-up visit, with the issue still persisting, I told her that I want to get tested for Celiac disease because of family history. She agreed, and Celiac disease was discovered. The confirmation happened a year later than that because of how the medical system works in Canada. I’ll spare you the details.
For people without any family history – or knowledge of it – the diagnosis can take even longer.
Conclusion
Considering that there are many stages through which one has to go through to get to the diagnosis, the delay can be significant. According to a survey done with Swedish Society of Coeliacs [1]:
The mean delay to diagnosis from the first symptoms was 9.7 years, and from the first doctor visit it was 5.8 years.
In a more recent study, using 2 databases of celiac disease patients, the average time for diagnosis was found to be 27 months (2.25 years). A huge improvement.
In my personal journey, however, it is hard to say since when I had it before visiting a doctor for the same. I had an eating disorder as early as 9 years old. I have some memory of it, but not too clear. I wasn’t worried about medical conditions as a kid. I only see them retrospectively. Regardless, I have made my peace with not knowing the past. And only working towards my future life.
I would love to know other people’s journey through their diagnosis and acceptance. Please share if you wish to in the comments. Thank you!