I don’t think all doctors suck. Some of them, however, undoubtedly do. I’m sure, like with any profession, doctors can become jaded and easily burn themselves out. I’m sure they see their fair share of people who think because they know how to use Google, they must be as intelligent and as informed as their doctor. But when doctors stop listening to their patients, and ignore their concerns, that just plain sucks.
According to studies, it can take an adult an average of 4.4 years to be diagnosed with Celiac disease. That’s just an average. So for my 4 months from full on symptomatic to diagnosis – it means that someone else out there was suffering nearly 8.5 years before they finally had their answer. That’s just stupid. Why is it taking so freaking long for people to find out what’s wrong with them? Doctors. And a lack of advocacy on the patient’s behalf. Ok – I’m not going to pretend like doctors are evil. They can do a lot of great things and undoubtedly they help a lot of people feel better. And I’m not going to pretend like we don’t have to fight for our own best interest. We do. We as patients need to arm ourselves with knowledge and not be afraid to disagree. (Preferably without yelling. Or throwing punches. I’ve found doctors don’t like that much. Ok, I haven’t tried the punching but I can only assume they don’t like it.)
I’m sure many people who have ended up with a Celiac disease or gluten intolerant diagnosis were told at one point they have IBS. How would the doctor know that, since, you know, there IS NO TEST FOR IBS? It’s impossible to diagnose someone with IBS without ruling out everything else. I recall when I was getting ready to go in for my colonoscopy/endoscopy, speaking to the nurse on the phone. She said “I see that you have IBS.” Poor nurse. I think I unleashed all of my frustration on her. “I DO NOT HAVE IBS! How would he know? They haven’t even tested me yet! Take that stupid word out of my chart.” Ouch. Melissa has certainly had better days than that. Sorry nurse. My point, while likely not understood as I was screaming on the phone, remains the same even today. How can you know if you have IBS if you haven’t adequately tested for the alternatives?
For many people, gluten intolerance can be tested via a blood test. I’m medical-stupid here, though, I won’t pretend to understand exactly what you need to ask for – but I read it’s something called an IgA test. I was lucky enough to have a great primary care doctor who knew exactly what to run for me (it was my GI specialist that was greatly lacking.) My blood work all came back 100% normal so I was referred to a specialist. It’s important to note that no blood test is conclusive for Celiac disease. An endoscopy is the only sure-fire way to test for Celiac. A GI Dr that told me, despite having been feeling better on a GF diet (which I did before my endoscopy – that’s a no-no, don’t listen to me), I was just suffering from IBS. In fact, he prescribed me pills that were basically great strength immodium. Gee, thanks! I’m so glad you want to put me on pills instead of *listen* to me and actually consider that I might be gluten intolerant at minimum, Celiac at worst! He was convinced he needed to do a colonoscopy. I only agreed if I could do an endoscopy at the same time. Several weeks later, I had my appointment, 2 weeks after that my Dr called me with the results. The first words out of his mouth “Hi Melissa. I’m really surprised, but it appears you have Celiac disease.” Wow. So shocked. Or not. It was nice to have confirmation for once. I wasn’t crazy. In relationship to my intestines, anyway.
But you know what? I didn’t need him calling me to confirm my diagnosis to feel better. I was feeling great on a gluten free diet at that point – so while it felt nice to have validation – I didn’t need it. I was my own best advocate. I didn’t wait for someone to tell me to go on a gluten free diet. And while I always suggest you going to your doctor armed with knowledge and hoping for the best – YOU know you best. YOU are the only one in control of your diet. Don’t wait for a doctor to tell you he doesn’t know what’s wrong with you – go to them with ideas. And when they don’t want to listen? Get a second opinion. Or a third. And if you’re like me and just can’t take it anymore or you can’t handle waiting 3 months until your next appointment – what’s the harm in trying a GF diet? (Please note you should be on a gluten filled diet for testing or it can skew your results.) Or making any change that makes you feel better? No one ever died from cutting gluten out of their diet. I think. I don’t know for sure. Maybe there’s a rare condition out there. But don’t worry, I doubt you have it.