My GI System Hates Me - part four: What next?

 To get a better idea of what I'm talking about, read the rest of "My GI System Hates Me"

In January 2012, I was diagnosed as having one of the two genes responsible for coeliac disease. This was discovered through a simple blood test which showed I had the more dominant coeliac gene. While I am not "officially" a coeliac unless I have a biopsy, my doctors have decided that it is almost 100% certain that I am due to my experiences (and damage to my GI system) and so that's what they've given me as a diagnosis. 

I'm the only one in my family that is known to have the gene, at this stage. I am begging my sister to get the test so she doesn't end up in my situation - but I can understand her not wanting to know.

To put it simply, when someone has one of the two coeliac genes they either show symptoms or they don't. They can have non-active coeliac disease where they can go their entire lives eating gluten without a problem or, like me, they can get to an age where suddenly damage occurs in their intestines and the problem is diagnosed. 

The reason I have so many food intolerances is thought to be due to the damage done to my intestines from eating gluten for so long. I won't ever know if I was on a gluten free diet sooner whether it would still be the same outcome or not, so I don't even bother thinking about it. 

I was feeling much better without gluten - but still not right. So the investigation went further..

My original doctor seemed to think of me as the boy girl who cried wolf and ignored any problems I presented to her by telling me they were all in my head or just due to complications from coeliac disease. For a while I believed her, I thought my body was just so damaged it would take forever to heal and until then I'd just have to put up with the constant nausea, fatigue and stomach pains. 

But then it got worse. I came back from Louisiana and found I was constantly exhausted to the point where I was having concentrating and remembering things and little things like having a shower or doing buttons up on a shirt felt like I was climbing Everest. I was so fatigued that I couldn't even be bothered going to get the groceries I needed and completely stopped going to my usual walks. I felt like a zombie and just couldn't understand why. 

I was fed up of going to my doctor and being told to deal with it, but she dealt the final blow when on my last visit to her she said "well.. medical science isn't exact... I don't think anyone will ever be able to diagnose you with anything because nothing comes back on paper and we just don't know what it is... but it's okay... you work from home". She refused to do any more tests because they were a bother. I was furious. I once again got into the car after the appointment and broke down, I couldn't handle being made to feel like I was crazy and that i'd have to live like this for the rest of my life. 

We immediately sought out a new doctor, found one and booked the first possible appointment in a few weeks time.  My fatigue, nausea and dizziness didn't settle at all while we waited for the appointment and I counted down the days until I might be able to get some answer.

We got to the appointment and within a few minutes, I knew we found the right doctor. My mum and I put it to her plainly... we wanted a doctor who would listen to me and take me seriously. She told me she would not stop until she found answers for me because everything I was experiencing was not normal and not okay. 

She sent me off with a giant list of blood tests to run (and promised me they'd still leave a little blood in me) and a referral for a CT scan that I was to have done and we scheduled another appointment for a few weeks time when all of the results would be back. 

Next week, I'll give you the full update now that I have the results and I know exactly what's going on - finally. 

So tell me, have you had bad experiences with doctors like me?
Or have you been one of the lucky few who have a great doctor?

For years I have dreaded appointments because I always got the same answers "Well.. I don't know what's wrong with you.. it's not clear... if it gets worse, come back... otherwise I don't know". I have a terrible track record of breaking down and dissolving into a puddle of tears after doctors appointments for this very reason.