thanks for the advice. I have tested negative for coeliac disease as well. It seems the only thing the doc can think of is Crohns, but no positive results from any tests so far.
Hopefully I'll eventually figure it out, thanks for the tips.
Apologies - you didn't state in your original post that you had already had an upper endoscopy.
Have you been tested for coeliac disease? You should also have your GI do some testing on your pancreas - I had a friend in San Francisco when we met over the Crohn's and Colitis foundation of America internet site (now defunct) some 5 yrs ago and although only 37 yrs old, she went on to get cancer of the pancreas. She had the capsule endoscopy, but it was a waste of time. She went to the UCSF hospital and had great treatment, although sadly died this year. I can give you her gastro's name if you want it.
I think your symptoms are very valid, and you must be proactive in finding a diagnosis and treatment.
I went 9 months, at 24 yrs old, in 3 different hospitals as an in-patient, before my Crohn's was eventually diagnosed and I weighed only 60 lbs, although eating well. Crohn's is a very difficult disease - not all patients "present" the same. As for me I didn't have any pain or bleeding prior to diagnosis, just severe diarrhea and weight loss.
As for me, I wouldn't touch a capsule endoscopy with a barge pole, as we say in England. Often with Crohn's you can have a stricture (narrowing) of your small intestine, and if that darned capsule gets stuck you are in for major surgery.
Do your own research, as on coming onto this site, and get a second opinion.
Take care,
Liz.
See thats the thing, i've had an upper endoscopy done by my last GI in my hometown (I'm currently in college) and he said he really didn't see anything to abnormal. However while I was still sedated he pressed on my stomach to see how I would react when I was asleep, and sure enough I cringed every time. I'm really sick of doing so many tests, i've had everything examined from my liver and gall bladder to a Glucose tolarance test. So far nothing is abnormal. However 2 month ago I randomly passed out while brushing my teeth. When I awoke I felt aware of what was going on around me but every time I tried to speak my speech was slurred as if I was drunk. Having not drank anything this worries me. I guess what I'm trying to get at is that I'm so tired of doing tests to try to figure out what this is, and from stories I hear from people with Crohn's, this could be a very likely cause. Unfortunatly, my GI has come to the conclusion that the capsule is the best thing to determine this. This was about 2 weeks ago though and I still haven't heard back from them.
Perhaps your GI could do an upper endoscopy as opposed to the capsule endoscopy. At least with the normal endoscopy, the GI is able to take biopsies and get pathological results. This will I believe, be a lot cheaper than the capsule and if Crohn's is suspected, is the major investigation, along with colonoscopy of the large colon.
By the way, I have had Crohn's for some 37 yrs and am on weekly methotrexate (a chemo cytotoxic drug, highly toxic to the liver.) My gastro can't understand why my monthly LFT tests are normal, as I drink too much white wine in the evening! The only time I stopped alcohol altogether was when I was on FEC chemo for breast cancer some 4 yrs ago. All I could drink was ginger ale and ginger beer, both non-alcoholic. They did quell the nausea.
I too am rather slight, 124 lbs, and I think the problem is in being unable to properly metabolise food when you have Crohn's, particularly in the small intestine. Luckily I don't have to diet!
Take care, and hope you get a proper diagnosis and treatment.
Liz.