Where shall I begin?
As expected my visit to the GP today (requested by the GP after the dietitian suggested a referral to the allergy clinic) was about why I might or might not need a referral. What I didn't expect was that the dietitian who suggested the referral is to be chastised for suggesting it and sent for more training within the allergy department! While I am pleased she will receive more training I am sure she does not need it and I am annoyed that this was the focus of my appointment.
The appointment progressed with my GP explaining she had spoken to the consultant at the allergy clinic who had confirmed that my IBS symptoms were not asymptomatic of an IgE allergy. She suggested to my GP that I should undergo a gluten trial and take a coeliac blood test. This is something the GP has already done twice with negative results (the first time 4 years ago and the second time recently but with out gluten in my diet).
I agreed with the GP that I do not exhibit IgE symptoms. I also agreed that to conduct a valid test for coeliac disease I would need to consume gluten for 6 weeks and have an endoscopy. This is something I am not willing to do until we have ruled out other possibilities. For instance what would be the consequence if I had a low level wheat allergy not coeliac disease?
I also asked whether the allergy department considers and examines for non IgE allergies. After much discussion going round in ever decreasing circles, she agreed to write to the allergy clinic consultant to ask for a referral, if only so they could tell me why I shouldn't be there!!
The initial Gastroenterology consultant and the subsequent Dietitians will be copied in on the email to the allergy consultant so that they can "all be kept in the loop". This was in case I require more tests or help from either department. However, it does question the diagnosis of the Gastroenterology consultant of IBS which I'm sure will annoy him greatly. I pointed out that he was not concerned by my symptoms and was happy to discharge me with a diagnosis of IBS. I reminded the GP that even the NHS is happy to agree that IBS is a collection of symptoms and not a diagnosis of the cause of the problem.
During the appointment there was the mention of budgetary restrictions and lack of NHS information. Both of which were dismissed by my GP. However, she could not argue that the information available to patients today via social media means that people have the ability to discuss and compare their problems with others across the country and indeed the world. This means that if a test is available or a diagnosis sounds like it has familiar symptoms, the information is out there for all of us to absorb and use for our benefit.
I had to fight tooth and nail to get further forward with my journey today. The key factor appeared to be that despite my GP repeating that she didn't know where to send me and that I had been diagnosed with IBS at the end of my over run appointment I was still sat in her chair wanting more answers and asking more questions. This is what it takes to get diagnosed?