I'm sorry you are all going through this. I have only had this for about a year so I know how you feel. The thought of having this for the rest of my life is something I honestly cannot imagine.
I have been diagnosed with Coeliacs Disease, Lactose Intolerance and am also allergic to Chicken, Shellfish, Grapes/Raisins/Prunes etc. Food is a huge issue for me and it's ashame because I love it!
I was diagnosed with IBS a few month ago by my GP. She shouldn't have done this because she didn't send me for tests to rule out any other issues first (e.g. Cancer!). I started a hypnosis CD program (Michael Mahoney, £60, would recommend it to everyone! Even those who don't suffer from IBS!) and my symptoms died down. Then a few months ago they came back worse.
I've just noticed that they are linked around the time of my periods. I've just had a good week where I was solid everyday (still living in fear that it wasn't going to be!) but tonight (a week before I'm due on) I had a sudden urge for the toilet. Great. I have got a referral to see a Gastroenterologist in October so I will keep you all posted as to what occurs. I just had some test results showing anomalies with my Thyroid and Kidneys but need more tests to evaluate what they are. Again, keep you posted! I am also (due to my MANY allergies) getting a referral to see a Dietician soon. Unfortunately, this time round, my stomach issues aren't related to food unless I just eat it. There is no common link in food groups and an upset stomach, it's just a week before and after my period anything I eat goes straight through me.
I am currently undergoing CBT for anxiety, emetophobia and related depression. The problem I have is not knowing what symptoms are linked to what. My temperature is constantly changing, I always have cold hands and feet, I always have vivid dreams and nightmares that cause me to shout out or talk in my sleep, I very rarely sleep through the WHOLE night without waking up. A few weeks ago I woke up completely drenched in sweat and it frightened the life out of me. I either have loose bowel movements or constipation when my stomach is bad. I suffer from terrible period cramps that actually begin the week before I come on (NOW for example!). I feel nauseous all the time. I often suffer from the shakes and I get terrible wind and am always burping. But what symptoms are down to anxiety and what ones are due to the issue with my stomach? OR are they ALL linked. I won't know until I have more tests done but I do know that the NHS will not fob me off and tell me it's nothing to worry about.
I'm 20 and no matter what age any of us are we shouldn't have to put up with this. If your GP has diagnosed you with IBS but hasn't sent you for tests, then they are wrong and you need to have tests done first. The symptoms of IBS match other things too like Thyroid problems and cancer. If your GP is just refusing you tests and a diagnosis - SUE THEM. The NHS is there to keep you healthy and well and if they aren't doing their job then make a case of it. OR - as a simpler option - change your GP, I know it's a hassle but it will be worth it if you can see someone who helps you. And, finally, those of you who have had every test done under the sun and have yet to gain any satisfaction or answers, don't give up hope. There may be some new issue we all have that they just haven't discovered yet!