My Diagnosis


I’m going to blog about my diagnosis and using self-knowledge to stay healthy.

I’ve been told “Knowledge is power.”  Sometimes when I’m consulting the resource my osteopath otherwise terms “Dr. Google,” it takes me a while to realize that accessing information on the internet doesn’t mean that I have complete knowledge about something.  That said, having the access to the world wide web is what helped me put the dots together and go get my blood test for Celiac’s at the allergists office in the first place.

What I learned in the process of getting diagnosed, was that there is no one that has more information about my body than myself…but it took me forever to be  able to communicate assertively, and with the right folks about my condition.

My history

A little about my history:  I grew up being a picky eater, had tons of bouts with hives and illnesses that a healthy person shouldn’t get.  I was often anemic.  I was short for my family and slow-growing.  At 17 years old I was diagnosed with Chronic Autoimmune thyroiditis.  Essentially my body attacks my thyroid organ, and having an autoimmune disease means I have chronic inflammation.  Once I was put on a thyroid replacement hormone and I saw little improvement in my symptoms, but honestly I left certain symptoms out of the conversation at well-visits.  I thought that I was doing the right thing by going along with everything and acting as though everything was fine.  Although none of my endocrinologists ever mentioned anything about testing for Celiacs, I never mentioned many of the embarrassing symptoms I had for so long because I was embarrassed to even talk about GI distress.  Over the last decade my health has been on this rollercoaster and I had done the Dr. Google thing and found Celiacs online.  I thought about  testing then, that was 7 years ago.  Finally when I was pregnant with my son and after he was born I started having some major issues.  It was too hard to manage every day with my symptoms and I felt like I was dying when I finally gave in.  I scheduled an appointment for allergy testing with a local allergist and asked him give me the lab order for the Gluten Intolerance blood test.  He was like, “Are you sure you want to do this? You don’t look like someone with Celiacs…” (I can’t tell you how many times I heard this, even from the GI that did my positive biopsy!).


At any rate, I write this for anyone out there that hasn’t acted on their gut feelings but may have the symptoms.  Knowledge is power. Celiac’s Disease is very common.  It affects about 1% of the population.  Part of me wishes I could step back in time and be honest with my doctors in the past, but, I have today.  So, from now on I am taking every day and checking in with my body.  Even if it sucks and is totally embarrassing…I tell my doctor exactly what’s going on.

To recap:  here is a list of Celiac Disease symptoms.   Take it from me,  Celiac Disease treatment is far less stressful than to deal with an autoimmune disease that is progressively worse and could lead to other complications if untreated.

So that’s all I wanted to share really.  Thanks for reading!


One Reply to “My Diagnosis”

  1. I had a very similar experience; my doctor ran the blood test at my insistence and then, when I came for a follow-up, didn’t even check the test results before the appointment. We talked about other things and then at the end, I thought to ask, “So…were the results negative?” and then he went and checked and came back looking not nearly shame-faced enough and said, “It looks like you have celiac.” But even THEN he kept saying it was a “rare case,” blah blah, and I was thinking to myself, “Oh my god, I know so much more about celiac disease than this doctor does just from reading some books and blog posts.” It just goes to show how many doctors don’t keep up with continuing education…but how well we can fill in those gaps as long as we remember, as you say, that knowledge is power!

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john pavlovitz

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