GF 101: The Big Deal with Self Diagnosis

Before I get started, let me be up front: I self diagnosed myself with gluten intolerance.



And let me be direct: regardless of what I did, any sensible guide will tell you to seek a conclusive diagnosis of celiac disease or non celiac gluten sensitivity before going on a gluten free diet.

And, one more thing, let me be really clear: I am not a medical professional, and this is not medical advice. It's the experience I had.

Now that's all out of the way, what's the deal with self diagnosis? It seems that every mainstream news article about gluten has a quote along the lines of "there's a lot of self-diagnosis going on out there." Like it's a bad thing. Or like the people who aren't going to to see a doctor aren't really aware of what's going on in their bodies. Or like the people who choose a gluten free diet because wheat makes them feel gross - intolerance or not - are just making it up.

Well. I'd like to offer my two cents on why self diagnosis isn't the worst thing in the world (even if it's not the best, either).

This story starts with your average American HMO. You know the kind. The one that's more about red tape and bureaucracy than actually keeping people healthy. This story also stars doctors who are so stuck in this system that they have to think about keeping the HMO's business before they can actually do the right thing for their patients. It's about a broken system. It's also about the pitfalls of a twenty-something being on her parents' health insurance as she begins her career (moving way out of network in the process).

So here's the deal. When I realized some of my symptoms might relate to gluten, I was in law school. I had recently had a series of run-ins with my health insurance over trips to a clinic for the flu and a wasp sting. The clinic said it took my health insurance. The insurance company said the clinic was not in-network. I couldn't even talk to my primary care physician because it had been so long since I had even needed to go to the doctor that they had moved my files to storage and claimed I wasn't a patient anymore. When I finally got to talk to the doc (400 miles and 8 hours away, at the insistence of the insurance company it was the only thing I could do), he said both visits were absolutely necessary, but even with his help I couldn't get the costs covered. And when I submitted a complaint to the insurance company, that too got lost on an unbelievable bureaucratic journey that ended in the black abyss known as the circular file.

I was no fan of dealing with this HMO, let me tell you. Added to this was the fact that once the HMO started actually talking to me, I found there were only two doctors in a 75-mile radius who were in network. One was in an area that was unsafe. The other was a 45-minute drive over steep and winding mountain roads. Not such an easy trip when you're trying to juggle law school, a part time job, and trying to keep whatever's left of your sanity. So I made sure not to get sick.

How I feel about Average American HMO.

That was my situation when I first thought I might have celiac disease or gluten intolerance. Nothing was less appealing than going to a strange doctor who probably would have had no idea what I was talking about. And as a law student, I didn't have the time or money for a ton of tests. And honestly, I didn't know a lot about what to do. So I put myself on an elimination diet for three weeks where I didn't eat any gluten. After week three, I ate gluten. And oh boy, did I react to that gluten. As a result, I self diagnosed myself with gluten intolerance.

Would I like to know for sure whether I have celiac disease? Yes.

Do I want to go back to eating gluten to get a diagnosis? Absolutely not.

Do I know what's going on with my body? Usually. And when I don't, that's when I do go see a doctor.

Don't get me wrong, getting a firm diagnosis has a lot to offer. For some people, it's a relief to have their pain and suffering finally explained. For others, it's the push they need to finally start taking care of their bodies. But for me, getting a firm diagnosis would have meant more difficulty, more bureaucracy, and more of a headache than I needed at that time in my life.

I don't think self-diagnosing myself with gluten intolerance makes my experience any less valid. Sure, I admire the people who have the ability and determination to fight their way through the healthcare system, but that's just not me. There are plenty of people who know just how much their bodies feel when they eat gluten free. Just like me,  their experience is no less valid than someone whose doctor told them to eat gluten free.

When we have a healthcare system that makes it difficult for patients to get the care they need (healthcare bill or not...which is totally outside the scope of this story), coupled with doctors who didn't learn much (if anything) about these conditions in medical school, there's going to be a decent amount of self diagnosis. So instead of putting people down who have legitimate needs and concerns, why don't we focus on fixing the system that makes it so difficult to get those needs met?