Friday, 23 November 2012

To be diagnosed or to self diagnose that is the question

What happened today.....

....After years of symptoms and woolly suggested diagnoses, today I went for my referral to see a gastroenterology consultant. This appointment came from my GP and took 8 weeks to reach after experiencing more severe than usual stomach pains, bowel problems, nausea and more symptoms I'm sure you are familiar with. I had been pre-warned that I may not find the answers I've been looking for but armed with knowledge and hope off  I went.

The consultant was a middle aged man who politely stuck out his hand for a handshake and invited me to sit down and explain why I was worried. Unfortunately that was the best bit of the appointment. I explained my history and current problems and how I had been "diagnosed" with lactose intolerance 3 years ago by means of an exclusion diet. I also enforced that I was at the appointment today to get a formal diagnosis by way of any tests necessary.

After looking at my BMI and blood test results Dr Dunlop delighted in blasting me with the facts and figures of the type of people that have lactose intolerance, where it is most common, that it is very common and concluded by telling me that he had worked along side a professor very interested in the links between lactose intolerance and IBS.

He then briefly examined my tummy before returning his attention to IBS. His exact words were "as you appear to have had a delicate stomach all your life, but have met all of your growth markers I suspect you have IBS which is very common and may or may not be linked to your lactose intolerance".

Having suspected this may be the only information he was willing to put forward and therefore not discuss any other forms of tests or possible causes I put on a more insistent stance. I asked whether I could be tested for any IgE and Non IgE allergies to prove or disprove my possible illness. The look of shock on his face was a picture. After telling the previous woman (those walls are not thick enough) that she also had IBS and caffeine was a trigger, she seemed to accept her lot and wandered off quite happily. However, I was not content with being told I probably had IBS and lactose intolerance and its very common and wanted to ask questions. The response I received went along the lines of  "if you had an allergy you would have trouble breathing and yours lips would turn blue and you would then require hospital treatment". The short version of what I replied was to ask again if allergy testing was available on the NHS and if so do you have to have an anaphylatic response to be eligible for testing? I think asking more pertinent questions only angered him as I was then told this hospital would not spend money on testing everyone and the tests are not robust anyway!

I came away from the appointment with a request for blood samples and a stool sample to be taken by my GP surgery and a follow up appointment for 6-8 weeks to see if I had lost more weight. If I hadn't pushed for further information I would have walked away, like the first lady, with a verbal diagnosis of IBS and Lactose intolerance and no further action required!

So when someone next writes that self diagnosis is unnecessary, avoidable or even dangerous maybe they should be referred to this blog?

Apologies for ranting but I hope that this post gets followed up by a more positive, helpful and formal diagnosis. I also hope that if you have been through this journey, you think you might be experiencing similar problems or you are looking for help and advice that you find something helpful.

2 comments:

  1. That is not at all a way a specialist should act, but sadly I know the type all too well. If you have the energy to, try and run an exclusion diet yourself for a bit, and try other things than just lactose. That way, if you DO happen to react to something else, you can try and avoid it too. I know I react worse to lactose if I eat too much citrus fruits or drink too much citrus juice, for example.

    Lactose intolerance is very hard to medically confirm, though. My GP recommended I should just test it myself, as no tests he could do on me would help at all.

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    1. Hi thank you for your advice. I will be persevering with the NHS diagnosis until I feel I have exhausted every avenue. I am interested in doing an exclusion diet myself as that is the way I self diagnosed lactose intolerance for myself and my then 7 week old baby. However, I am now keen to investigate further and would like medical help in ruling out any under lying problems that may be causing the lactose intolerance and other symptoms. I also want to know more before having any more children in case I am passing another illness on to them.
      I will update the blog with my progress.

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