The Trouble with Diagnosis...

I start this thread with a big massive "sigh!"

I am fairly certain I've experienced the five stages of grief lately, in regards to the loss of my sanity and my faith (and patience) with doctors.

I'm a 34 year old woman in Australia, and can't remember a time where breads, gravy, pastas or rye breads etc etc, didn't make me feel like throwing up, or made me curled up in pain.

I recently went to the GP to organise an endoscopy, in which case she said no. She said that under the public system, unless we (the GP) have done enough research first, and found evidence that would suggest I may have coeliac disease, they won't allow an endoscopy. I don't believe this is true - I know people who have had endoscopies without much to go on.

I told her that I had been doing a LOT of research into the disease, and my symptoms should not be ignored. Our public system here is pretty damn good - so I'm not sure she's telling the truth...

She asked me what my symptoms were, and I got through about three (out of many more) before she started talking over me.

She said my previous blood test for coeliac came back negative, therefor I don't have it. I told her that the blood test is frequently a false negative, having known someone with coeliac (discovered finally by endoscopy), and her blood test came back negative also. The doctor looked at me like I was full of s**t (so to speak) and I told her that for some, it is a very hard thing to diagnose. Why am I telling her this? Shouldn't she know, you know... stuff? 🙄

Then at some point she said "we can look into other tests to find out more. If you DO have irritable bowl syndrome, there are other ways to find out"... um, did she just say that I implied I had IBS? Yes - yes she did. And I (quite annoyed at this point) corrected her ironically "IBS is not Coeliac disease...." and she finally heard me (I do think that half the time, she wasn't listening) and said "oh yes of course. I know." And that was the end of that...

I asked her for a referral to a specialist in Sydney (about 2 hours away). She said "that's a private one"... I responded "yes I'm aware, but maybe he will actually know what to do". 

"You will probably have to pay for it" she added

"I'd rather pay for it and find out sooner, than try to fight the public system for an endoscopy and continue eating foods that cause me endless suffering". 

Ughhhhhhh! Ok, deep breath.. and out. 

So she decided to send me for another full blood check - the last ones I did were back in November. 

Back then: My liver levels were high, to the point they were concerned. My inflammation was up, and my iron was on the low side.

This time: the inflammation was a bit more normalised, the liver levels were back to normal (I knew this could be related to anything - not alcohol because I barely ever drink, but perhaps high sugar in the diet. I quit drinking energy drinks, so it was likely that - nasty stuff if that's the case!!!) 

This time, my iron had dropped another 3. I haven't had less iron foods in my diet, in fact, I probably have more than I did in November, and I'm not losing blood anywhere, so not sure if this is related to Coeliac, or something else. I do wonder if they will continue to drop.

Overall, my blood tests appear decent enough - which of course means the doctors look at the text book Coeliac blood results and say "you're fine, off you go".

But how is it fine? How is it OK to ignore someone's symptoms?

I went off gluten for about a year until someone said it was necessary to eat gluten in order to know if I had Coeliacs. Thus I went back on it for the tests, and I knew then it wasn't in my head (even though these doctors put some doubt in my head at times).

The first four weeks of eating gluten again, I experienced all of the symptoms I'd had before, but so much worse than I'd ever had: migraines, dizziness, lethargy, interrupted sleep/restless sleep, nausea, "puffiness"/swelling, bone and joint pain, stomach cramping (pain that grew and shrunk, if that makes sense - like brightening and dimming a light), diarrhoea and constipation- often in the same day, my vision worsened (but I wasn't sure if this was from lack of sleep) mood swings, and depression that got to the point where I genuinely wasn't sure I wanted to live. I looked like hell, and the little tiny bumpy/pimply rash on my arms and legs was more prominent again.

Does this sound like a person who is well? What good doctor would look at those things and ignore them because the blood tests were OK?

I've seen two GPs now, and both had that dismissive attitude. I leave feeling totally deflated, angry, and like I want to cry. Some days I feel like just plain giving up (on the diagnosis, not life).

Who the hell gave them so much control and power over what we were allowed to find out about our own bodies?

So here I am, eating the equivalent of at least 6 pieces of bread each day; I wake up with puffy fingers most days, and have to force my rings off. Every meal is followed by cramping and bloating. I feel so tired of trying to make people listen, to be met with naivety and ignorance. 

Excuse my need for a bit of a vent session, but I also would love to hear anyone else's thoughts and experiences. I don't want to give up, even though part of me is just "done" with it all. Some of us are lucky that the diagnosis period is quick and easy, while many others feel like they're alone, standing before a bunch of medical professionals who tell us our word means nothing because we don't have a PhD in medicine. Please do share! 

Side note - I have attempted to make an appointment with the specialist but it was a bit weird - I had to have the GP fax the referral to his office, then he will mail out an appointment time. So the wait for that begins. Will keep you updated on the next stage. Fingers crossed 🤞 

Thanks for reading xx

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