As someone with diagnosed celiac disease, it took a very long amount of time for me to get diagnosed.
Already when I was around 10 years old I would go to the doctor and he'd say I might have irritated bowel syndrome but really, no treatment would help. I have memories of stomach pains so severe I'd bend over in pain.
It got better in my teens, or I got used to the pain, I can't really tell which. Many years later, when I was 25, I got internal bleeding and a pain so severe my doctor sent me to the ER for suspected appendicitis. However, after an MRI revealed nothing I was sent home without diagnosis.
My doctor finally sent me to get a biopsy to figure out what caused this and it showed that I had celiac disease. I've since followed a gluten free diet quite strictly, but I never get immediate or obvious symptoms so it's very hard for me to tell how well I'm doing. Some times I feel an unexplained tiredness or stomach pain, which probably means I did somehow eat gluten.
This is all to say that celiac disease is a very "murky" condition. Doctors don't always seem to know how or when to test for it (I suspect it's getting much better than 20 years ago). The actual test is quite invasive (again, I've seen there's headway in this space). And even if you confirm that you have celiac disease, it's not always easy to monitor your track record because the damage to your insides is long term and at least in my case I only seem to be able to sense it in more severe transgressions.
The scariest part of it all is the long-term dangers of celiac disease. Eating gluten with celiac disease is linked to a long list of deficiencies and other issues, leading to fragile bones, tiredness and even nervous system disorders (numbness, seizures, headaches, anxiety, etc).
I hope we get better at diagnosing this, it might turn out to not be as rare as we thought!
Already when I was around 10 years old I would go to the doctor and he'd say I might have irritated bowel syndrome but really, no treatment would help. I have memories of stomach pains so severe I'd bend over in pain.
It got better in my teens, or I got used to the pain, I can't really tell which. Many years later, when I was 25, I got internal bleeding and a pain so severe my doctor sent me to the ER for suspected appendicitis. However, after an MRI revealed nothing I was sent home without diagnosis.
My doctor finally sent me to get a biopsy to figure out what caused this and it showed that I had celiac disease. I've since followed a gluten free diet quite strictly, but I never get immediate or obvious symptoms so it's very hard for me to tell how well I'm doing. Some times I feel an unexplained tiredness or stomach pain, which probably means I did somehow eat gluten.
This is all to say that celiac disease is a very "murky" condition. Doctors don't always seem to know how or when to test for it (I suspect it's getting much better than 20 years ago). The actual test is quite invasive (again, I've seen there's headway in this space). And even if you confirm that you have celiac disease, it's not always easy to monitor your track record because the damage to your insides is long term and at least in my case I only seem to be able to sense it in more severe transgressions.
The scariest part of it all is the long-term dangers of celiac disease. Eating gluten with celiac disease is linked to a long list of deficiencies and other issues, leading to fragile bones, tiredness and even nervous system disorders (numbness, seizures, headaches, anxiety, etc).
I hope we get better at diagnosing this, it might turn out to not be as rare as we thought!