How do I get my diagnosis of bipolar disorder reversed on the NHS?
In 2011 I sufferered from an acute, rapid onset of symptoms while sat at my desk at work. There was no warning. In a matter of seconds I developed neurological problems affecting my visions and balance, and a hugely debilitating set of psychiatric problems including psychosis and rapid mood swings. Over the next few months and then years it worsened to include anterograde amnesia, serious physical health problems including nerve pain, huge weight gain and skin problems. I developed numerous autoimmune illnesses, including Hashimoto's thyroiditis. In all I had over 100 symptoms. My doctors didn't really have a clue what was wrong with me and the closest diagnostic criteria they could find was bipolar disorder type 1, rapid cycling with psychosis to explain the mood and eyesight issues. No one addressed the other symptoms.
I was treated, inhumanely in my opinion, with several psychiatric hospital admissions and antipsychotics over a period of 5 years.
In January of this year my own research into my illness revealed that gluten psychosis, along with autoimmune reactions to other foods, including grains and dairy could be attributable. I therefore stopped eating all of these foods and became incredibly well within days. 7 months later and I am more well than I have ever been in my life. I've lost masses of weight, I'm fit and healthy, and my mental health is completely stable. I have no symptoms whatsoever and I'm completely med free. I've even gone back to work after years of unemployment. It truly is miraculous.
Prior to my onset of symptoms in 2011 I'd been under the care of a gastroenterologist and was investigated for coeliac disease, which came back negative. I was then put on a diagnositc diet which excluded a huge range of foods, including grains and dairy, and then reintroduced them one by one to look for symptoms. It was only when I reintroduced wheat that I got very unwell. Sadly my brain was so badly affected that I was far too ill to be able to communicate the correlation between my diet and my symptoms and everybody missed it entirely.
It turns out that I almost certainly have the gluten reacting transglutiminase 6 antibodies attacking my nerve and brain tissue leading to inflammation, and ultimately autoimmune encephalitis. I've had confirmation that this is the likely cause after corresponding with Prof Lennox at Oxford, who is one of the worlds leading immunopsychiatrists. She advised that I may also have other anti neuronal antibodies such as NMDAr or LGI1 and has invited me to join a medical study. I have also seen the private psychiatrist who treated me initially and he has also agreed that my illness is autoimmune in nature and attributable to diet. He is no longer my doctor and cannot therefore make any changes to my diagnosis.
I am now seeing a NHS psychiatrist 'for monitoring'. She told me that the diagnostic criteria doesn't exist for what I have and that she therefore has no intention to help me get a formal diagnosis or find out why I got sick. The only thing she will commit to is that my symptoms are 'unusual'. I've asked her to reconsider my bipolar diagnosis but she says that this cannot be reversed, although she did say she might reconsider in a few years if I remain well. This is not acceptable, partially due to the negative impact this can have on getting car or travel insurance, but also because of the stigma associated with it, particularly in the workplace. Most importantly though is it doesn't tell doctors what's wrong with me, or how to treat me. If I accidentally eat gluten, grains or dairy I could have an onset of symptoms and then be too unwell to articulate that I need a strict diet and not antipsychotic treatment or hospitalisation to get me well, yet there is nothing in my medical notes to state this. I have absolutely no idea what to do about it.
Right now I'm scared to travel or stay with friends or family for fear that I will eat the wrong food and get sick and then get the wrong treatment.
I would love to know if anyone can advise me on what to do. My doctors seem totally out of their depth.