Monday, 11 February 2013

And the journey continues.....

More of me ranting I'm afraid. Read on if you are following my journey to diagnosis!
Saturday I finally received the requested copy letter from my gastroenterlogy appointment. The letter was predictable but my annoyance grew as the day progressed and the words came back to me. By the end of the day I was ready to scan the letter and post on my blog! However, in hindsight I'm pleased I haven't as this is probably illegal and not very productive. Instead here is my summation.
To begin with my diagnosis is now stated as Type D Irritable Bowel Syndrome and Possible Lactose Intolerance. If no one is willing to test me I presume this will always be "possible" and never confirmed.
 The blood test results are noted as being unremarkable. As its always nice to be "normal" as opposed to insanely different to the majority of the population I suppose I should be grateful. I am of course grateful that they do not confirm any major illnesses that other people are struggling with. I hope that the actual details of the blood tests will be available for my GP to read so that we can move forward in my next appointment.
The part that has angered me most comes next. His sentence wholly inaccurate and made no sense. "She hasn't definitively tried a high gluten-free diet for 6 weeks and then had her TTG's done". I presume from this badly composed sentence the consultant means I haven't completed a recommended high gluten diet before a blood test for coeliac markers. This is followed with "however I do think its unlikely they're going to be positive". Surely a diagnosis should never be based on a single consultants view of symptoms. Especially when considering a condition which varies from many symptoms to very few symptoms and can only be confirmed by specific testing.
The recommendations for treatment for my diagnosis of IBS were as follows:
  • may benefit from excluding dairy for a month or so
  • similar approach for wheat products
  • further dietary exclusions are often unproductive, as is allergy testing
  • look at anxiety and stress side of symptomology: Amitriptyline (an antidepressant drug), Psychologist, relaxation classes, hypnosis and lifestyle changes
  • Colpermin and Buscopan (both contain lactose!)
To say the recommendations came as a surprise is an understatement. We had discussed stress as a factor but I had stated that there appeared no connection to my symptom diary. The consultant did not mention any of the above anxiety and stress treatments in the appointment. Had he mentioned them then I would have been able to discuss their lack of suitbility for my situation. I don't disgree that stress can play a big part in IBS and other conditions, however, in this case it would hve been inappropiate to recommend some if not all of these treatments. I'm sure he knew that he would get a frosty (but well rounded) reaction to these recommendtions and that is why they weren't discussed with me.

Since my appointement I have excluded wheat and gluten entirely and seen a vast improvement in my symptoms.

It will be interesting to see how my GP appointment pans out next week. I will of course let you know!


  1. Emma this is awful and I really feel for you. You sound like you are doing the right things for yourself even if you don't seem to be getting professional support. Take care x

  2. Livid! Just livid! What on earth is wrong with these people. Amitryptiline?! For heaven's sake!!! I think I will leave it at that!!! Good God.

  3. Thank you both. It is very frustrating knowing that excluding wheat and gluten is having such a positive effect but without medical confirmation. I am determined to find out more afterall it is my own body and my symptoms and I know that I need to do something about it.