Why so many people with celiac disease are undiagnosed?
If you have ever wondered about some unexplainable symptoms in your body, this post might be for you. Ignorance is not bliss, at least not for long.
Of the many unknown facts about celiac disease, this may be the most disturbing one. According to a 2018 study, for 54% of patients it takes more than 3 years to diagnose celiac disease.1 Practically, it means that people are living with symptoms for years before they get any relief. A more recent study, from 2023, found that the median delay between onset of symptoms and diagnosis was 27 months (2.25 years).2 That is quite a long time to be living with unexplainable symptoms without any obvious way to relieve them. The studies also find that health-related quality of life suffers greatly for those individuals.
What takes so long, and why?
I realised that I was on the luckier side to be screened on my second visit to the doctor. Although the diagnosis was confirmed more than a year later, my doctor advised me to avoid gluten within only 3 months. Even with the biopsy, it took only about a year and a half. While I was able to change my diet quickly, many keep consuming gluten without knowing the damage it is causing to them. A lot of people are hospitalised because of sickness without knowing the true cause.
Celiac disease is rare
One of the reasons for delayed diagnosis is rarity of the condition. The highest estimate of people with celiac disease is 3% of the world population. The rarer the disease the less likely it will come up in a doctor’s evaluation. If one knows their familial medical history, it can immensely speed up the diagnosis process. Doctors can consider those factors and so can friends and family. However, I understand that everyone can’t find it out.
Celiac disease is chronic
Secondly, the chronic nature of the disease keeps it as the farthest thing on the radar. Understandably, chronic conditions are something a doctor will probably not “scare” anyone with unless. they are sure about it. They don’t want to be misdiagnosing people with chronic issues without ruling out possibilities of curable diseases. Many chronic issues require regular medications with certain side effects, which are only worth it in the face of specific problems.
Denial of existence of symptoms
Thirdly, the biggest hurdle isn’t the medical system, although it is easy to blame. In my opinion, the bigger hurdle is the self-acknowledgement of symptoms. One tends to see a doctor when they feel something is wrong. The symptoms can be minor enough in initial months to be ignorable. In my case, it was inflammation on my hands and face in the morning, which went away after a couple of hours of waking up. I confess that it seemed minor, ignorable at first. Until, I noticed it daily. I know many who won’t feel like seeing a doctor for that. After all, who likes to visit a doctor?
While I did mention that after I noticed inflammation, it only took a little more than a year for the diagnosis. However, many of the issues I had for years went away after switching to a gluten-free diet e.g. skin-related issues. So maybe, I had the disease for longer than when I started noticing it. But who knows how long?
Obscurity of the symptoms
Last but not the least, sometimes we fail to notice the symptoms. For instance, my bowel movements hadn’t been well for years, but I didn’t know it. The departure from normal was gradual. The discomfort in my belly went away quickly after avoiding gluten. It’s similar to worsening of eyesight. One doesn’t notice a worsening vision. The realisation only comes when we visit the optician. Suddenly, what one thought to be normal vision, is blurry.
What can we do?
Clearly, the awareness of issues like celiac disease will help many who are undiagnosed. Noticing your body is a hard thing to do, but I think most people with food allergies have some sort of a system to record their condition daily. While getting tested for everything can help narrow down to a medical condition with the help of a doctor, many of us don’t have the resources (time/money) to do that. But everyone can do small experiments with their diet, lifestyle, habits and record changes by keeping a journal. It is hard work, but valuable. This humble advice is not only for people with celiac disease or chronic conditions, but everyone. A rough journal helped me recognise initial symptoms even before I visited a doctor.
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Fuchs, V., Kurppa, K., Huhtala, H., Mäki, M., Kekkonen, L., & Kaukinen, K. (2018). Delayed celiac disease diagnosis predisposes to reduced quality of life and incremental use of health care services and medicines: A prospective nationwide study. United European gastroenterology journal, 6(4), 567–575. https://doi.org/10.1177/2050640617751253
Mehta S., Agarwal A., Pachisia A. V., et al (2023) Impact of delay in the diagnosis on the severity of celiac disease, Journal of Gastroenterology and Hepatology, doi: https://doi.org/10.1111/jgh.16385