Undiagnosed IBS

[Buddha88]

My symptoms started about 18 months ago. At first it was just bloating and stomach cramps in an evening after a big meal, occasionally this would also cause diarhea. I ignored it for months, assuming I was just eating too much for my evening meal.

Approx. 6 months after this started the symptoms became a lot worse. I was unable to eat a meal at any time of day, no matter how big or small without instant unbearable pain in my upper abdomen. It was generally right under my ribs in the centre but spread right down to the bottom of my abdomen too. I would get very bad bloating, my stomach would go very hard and I could put on a few inches around my stomach throughout a day. Eventually it got to the point where I would pass out from the pain, unable to stand for even a few minutes without feeling faint and constantly having to dash for the bathroom.

The embarrassment was one of the worst effects as I felt I couldn't go out incase the diarhea came on and I had to get to a bathroom. I couldn't work and my lifestyle changed dramatically.

I started seeing a GP in August last year. At first he believed it wasn't IBS as the pain was too high in my abdomen. I have tried Buscopan, Mebeverine, Lanzoprazole, every diet in the book and now I'm on Amitriptyline and probiotics. I have had two ultrasounds, an endoscopy and a CT scan along with blood tests for all sorts of things inlcuding coeliac. All were clear.

I've currently got my symptoms under some sort of control, but I have to be very careful what I eat. I lost 2 stone (I was only 8 and a half to begin with) but have put a stone back on since. I find the Amitriptyline helps to an extent but I still aren't living the life I was previously and my symptoms are still undiagnosed. I was past from one GP to another until they realised I was losing so much weight, at which point they referred me to a specialist.

I'm not sure whether I'm expecting help from this post as much as sharing my story. As a previously very healthy 24 year old the impact of (possible) IBS on my life has been massive and I'm hoping one day I can claw back some of my old life. The only other things I'll mention is that I've suffered from eczema since I was about 10 and have been told on a number of occasions, by different GPs, that it's probably linked to a food allergy but nobody seems to actually want to test me. I no longer eat red meat, potatoes, pasta, bread and various smaller things as they set off my symptoms.

[Julie Thompson]

Hi first of all thank you for sharing your story. I think the only thing to do in this instance is to wait for your appointment with the specialist, I'm afraid, to get a diagnosis. It is really important that you were eating gluten (found in wheat, barley or rye) to ensure the testing for coeliac disease gives a positive result, were you eating bread and pasta when you were tested? Please contact me if you were not. With any gut disorder people alter their diet to see if this improves symptoms and it can be difficult to do this accurately as symptoms are not always associated with the food that is just eaten, it could be the previous meal or even something eaten the day before. IgG tests for food intolerances advertised by companies are very innaccurate so please don't waste you money on having these tests done. The gold standard to test any allergy or food intolerance is a food exclusion re-introduction diet so you would need to ask to see a registered dietitian. It is uncommon, but not unknown, for people with eczema to have food allergies, food allergies in the general population are rare. Tests the doctors can do (IgE) can be difficult to interpret and need to be looked at by a specialist. If you have a very high total IgE test result, for example if something in you environment is triggering an allergic reaction, then food tests for IgE can be raised but this does not necessarily mean you are allergic to that food. You would need to test this by excluding then reintroducing that food, with the help of a dietitian to ensure this is done in a safe way, this is really important - do not be tempted to do this on your own. I am going to give you the link for The IBS Network self care plan, it includes information for people who think they may have IBS to see what else it could be and also gives you information on food intolerances and food allergies.
http://www.theibsnetwork.org/the-self-care-plan