Changing my bipolar diagnosis seems impossible!

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.

5 Replies

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  • Hi Nunezhall,

    What an interesting case study you make. My GP who is close to retirement age, says the fact some bodies to weird and amazing things, is what keeps her interested in medicine :)

    You have made your case very well in the information you have shared with us here.

    The easy part, I think, is that you need to carry a card in your wallet with a statement to the effect "I suffer from XYZ allergies. If you see ABC symptoms, I require DEF treatment". If you go overseas, you might want to translate into another language as well as English

    In Australia, we have a Medicalert bracelet which is like a medical emergency ID bracelet which I highly recommend. If you do a Dr Google search under " Medicalert bracelet " lots of options pop up including Universal Medical ID - UK.

    Now what to do about your health status.

    The NHS probably has a website. Hopefully there is some info there about how to make a complaint about your record or to have it reviewed.

    I think you need strike up a good relationship with your GP who would have contacts to update the record, if not able to make entries on the electronic health record itself. The thing to remember the psychiatrist is just a doctor with specialist training in the mental health field.

    They both would access the same system.

    If you GP is willing to put the latest information about your health on a letterhead, you could use that for any number of situations including travel insurance.

    If all else fails, maybe a phone call to your local member of parliament will do some good. The MP can talk to the Health minister on your behalf.

    Special dietary requirements are now fairly run of the mill if eating out so you shouldn't have too many issues asking for a special menu item. If dining in with family and friends, you might be able to give them some recipe ideas for when you join them for a meal.

    I feel like I have learned so much from your post. Thank you :)

  • Thanks for the reply.

    There is considerable emerging literature in this area. A recent summary has highlighted a number of possible antibodies that can lead to autoimmune psychiatric illness: aealliance.org/steady-progr...

    Prof Lennox told me that at least 10% of patients suffering from a psychiatric illness will have anti-neuronal antibodies damaging their brain tissue. She told me that anti NMDAr antibodies, anti LGI1 antibodies as well as one of the anti tissue transglutiminase antibodies can be detected by analysing the cerebral spinal fluid through a lumbar puncture as well as an EEG to look at brain activity. Sadly I've not encountered a regular psychiatrist who would think of doing this.

    My psychiatrist explained that the problem is that detecting antibodies is one thing, treating them another. The diagnostic criteria simply doesn't exist and therefore psychiatrists aren't able to diagnose, nor treat autoimmune psychiatric diseases, even if they suspect it.

    The result of this lack of diagnostic criteria is that psychiatry only works with 'descriptive labels' and 'pills to mask symptoms'. It's a bit like an oncologist saying that a 'stage 2 primary oestrogen receptor positive breast cancer' that requires hormone therapy treatment is instead a 'lumpy breast growth that makes you feel ill' and requires nothing more than a tranquilliser to stop the patient complaining about it! That's pretty much where we are with psychiatry.

    While strong steroid based immune suppressants could help treat this, they have terrible side effects, possibly worse than the mental health problem they are treating, and doctors are reluctant to prescribe this unless the patient has life threatening seizures or becomes severely disabled.

    What I've learned is that autoimmunity starts in the gut. Prof Fasano et al theorised the 'autoimmune trilogy' which states that an environmental trigger (food), increased intestinal permeability and a genetic predisposition lead to autoimmune disease. Remove the environmental trigger and you treat the disease. I've removed my trigger foods and got well following a lifestyle called The Autoimmune Protocol.

    Doctors and pharmaceutical companies have little or no interest in diet and lifestyle so no one is going to recommend cutting out grains and inflammatory foods to treat bipolar disorder! Instead we get pills designed to do one thing - shut down parts of the brain to suppress the symptoms.

    I would encourage anyone with mental health issues and autoimmune diseases or symptoms such as fibromyalgia or chronic fatigue to try this. The It took me years to figure this out for myself and it cost me so much. I wish I'd done this decades ago and avoided the hospital admissions, drugs and madness I endured. It costs nothing and is perfectly healthy if done right. There is nothing to lose, and everything to gain.

    Until this becomes part of medicine our doctors won't talk about it. It will be pills or nothing but this has to change! Lifestyle is everything and we all deserve to be happy and healthy, even if the pill manufacturers, food industry and all those that profit from and subsidise them don't want it.

    Below is an email I received from Prof Lennox. The paper she sent can be found here: bit.ly/Gluten_bipolar

    Dear Michael, thank you so much for your email, and Im sorry for the delay in replying to you. Your story is very intriguing to me, and I would also have a high level of suspicion that your mental illness was caused by an autoimmune illness. I wonder whether you were tested for antineuronal antibodies at the time, and whether you had other investigations such as an EEG and lumbar puncture? The antibodies that I have found in people with acute psychosis are against particular brain receptors, and there are sometimes clues from these other investigations, even if the antibodies weren’t tested at the time.

    Even so, I think it would be worth testing for these antibodies even now, but with the caveat that if the tests are negative it doesn’t mean that they might not have caused the problem 6 years ago. Quite often they are around to cause the illness, and then are not detected later. The particular tests to request are for: anti NMDAR and LGI antibodies. More details of how to request these are here: Even so, I think it would be worth testing for these antibodies even now, but with the caveat that if the tests are negative it doesn’t mean that they might not have caused the problem 6 years ago. Quite often they are around to cause the illness, and then are not detected later. The particular tests to request are for: anti NMDAR and LGI antibodies. More details of how to request these are here: ‪sinapps.org.uk‬

    You may know that there is quite a literature now on the association between anti-gliadin antibodies and bipolar disorder, such as this paper. Interestingly they may be different to the antibodies that show up in the test for coeliac disease. I would put more weight on your observation and discovery as to what helps for you than the blood test.

    I hope that helps

    Best wishes

    Belinda

  • If u are in the UK can u request to make an addition to your notes a bit like what you can do to your credit history. So whilst it's not a change in diagnosis it at least adds in the relevant information.

    As for your reasons - I accept there is stigma in mental illness - however, that isn't a reason to change your diagnosis - and you appear to be buying into this stigma. The simple answer is you suffered a reaction to diet which impaired your physical function including mental function.

    I'm unaware that being bipolar affects car insurance tbh I could be wrong.

  • I am required by law to inform the DVLA and have to renew my license every three years and undergo a medical review. My car insurance premiums increased by over £150 per year the moment I mentioned my illness and some insurers won't touch me. No high street travel insurer will touch me either and there are only a handful of specialist firms that will and they cost quite a bit more.

    As for stigma - I talk openly and frankly about my illness in the hope that it educates and helps others. Sadly some people shy away from it but it's their problem, not mine. My problem is the label is inadequate and unhelpful. It's a big catch-all for that totally fails to explain what's wrong with me. I have a physical illness - something that is true of all mental illness.

  • Labels are for jars. I've had loads. They used to be far more handy for concessions and frustrating for restrictions than they are today. Insurance companies will use them more rigidly, normally to wrangle out of paying up, but then it all depends on the policy detail around pre-existing conditions. I wonder if it might help you to remember that labels change and that you are not a label? I am not the same person as I was seven years ago. Most people aren't, and that includes people's personality. We live in an evidenced-based world, but this base is always changing. Your invitation to be a research participant is seeking to change opinion and it's great you might get involved in the study, as you are the expert in your experience. Sounds like you should have loads of confidence going out and about without eating the wrong thing, as you seem so knowledgeable? Homosexuality was a diagnosis in the DSM-II until something like the early sixties. Like I say, labels change. Psychiatrists do change diagnosis, so you could always ask for a second opinion, though most do often say that each opinion from the last informs the other.

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