No One Knows You Better Than You

With some of my favorite people on Earth because I pushed my previous doctor and self-advocated.

I want to continue where I left off in my last post.  After I mention one symptom I forgot.  Vertigo.  Other than one incident last year thanks to a nasty sinus infection, I have not had vertigo in almost 2 years.  This particular symptom plagued me since college.  I never knew when or where it would hit.  One moment I’m doing something totally inane and the next the entire world around me is spinning and I’m fighting to focus.  Thankfully, I never passed out from it.

Someone asked me about testing.  I’m not well versed on all the tests but I know there are different blood, stool and genetic testing for Celiac and gluten sensitivity.  These tests look for specific antibodies that are present when gluten is wreaking havoc in our bodies.  There are also biopsies of the small intestines.  These look for the damage done to the vili from the gluten.  Some doctors still consider the biopsy the gold standard and will not give a diagnosis if it is negative.  There are many progressive doctors who specialize in Celiac and gluten sensitivity that want to see this change.   There are gene tests, too, that check for the proteins HLA-DQ2 and HLA-DQ8.

Since I was gluten-free for so long, all tests except the gene testing will be negative for me because there is no gluten in my system and my body has been healing.  My previous doctor and my current doctor were fine with leaving things as they are.  I think all doctors should be okay with that.  That is not the case.  Some doctors out there want you to go back on gluten in order to test you.  Not only that, there seems to be disagreement on how long you should be back on gluten in order for tests to be accurate.  Can you say malpractice?  This is nothing more than human experimentation.  Only we know the results before the doctors do.  I find it inexcusable for any doctor to think this is an option.  My current doctor knows there is no way in this world that I will willingly consume gluten for an undetermined amount of time just for a test result.  We should not accept doctors that force us into do anything harmful to our bodies just for the sake of a test result.  Here’s your test result. I’m 23 months gluten-free and I feel better than I have my entire life.

Doctors serve at our pleasure, not the other way around.  We resign ourselves to mediocre care because we grew up thinking the doctor knows best.  The truth is, doctors don’t know everything.  Yes, they have the medical degree and the training.  However, no one knows our bodies better than ourselves.  We know when something is wrong despite what doctors say the test results say.  My previous doctor was very open about saying, “I don’t know” when he really didn’t know rather than try to make something up.  He was also a good listener.  He would listen to me and what I was saying rather than try to formulate all the questions he was going to ask while I was talking.  He paid attention to my chart and remembered things.  He understood that when I sat on the chair and told him I want answers, that I meant it.  My thyroid levels were all within normal limits (WNL), yet I knew something was still off and the continued elevated ANA (anti-nuclear antibodies) levels worried me.  He calmly ordered more tests and sent me to specialists rather than tell me it was all in my head.  It is exactly why he was my doctor for so long.

We should never accept sub-par treatment from our doctors.  Never.  They have a job because we choose to go to see them.  They are supposed to listen to us and treat us based on what we want, not act like supreme beings that know all and we know nothing.  We can fire them anytime we want.  This is exactly what I did with my doctor before my previous doctor.  When he started to send me for tests that I already went through, I knew it was time to find another doctor.   You have to stand up for yourself.  No one else is going to do it for you.  Calmly tell your doctor what you need/want or about what you disagree with.  Persist in stating what you need/want if they do not listen.  If they refuse to listen or insist on something that you feel is harmful, find a new doctor.   Ask your friends for recommendations.  This is how I found my previous doctor.  Do research.  I found my Naturopath after seeing his business card on a table at a little deli near his office.  I looked him up online before deciding to call.

If you are fed up with your medical care, start asserting yourself and your position in that doctor’s life.  They can either listen to you and help you or they can be one patient lighter.  Advocacy starts with you.