I have endured gastro-intestinal symptoms for a long time such as cramps, gas, constipation, fatty stools and diarrhoea. As a result I was diagnosed with IBS twelve or so years ago.
Along with this I have experienced low weight and unexplained weight loss for nearly a decade. This has progressed from me finding it difficult to stay at a low but healthy BMI, to struggling to stay in the underweight rather than dangerously underweight category.
I went to a doctor (not my usual GP) as I was worried about my weight loss and felt that it might be related to my GI problems. I explained that I felt as though I was not getting any energy from my food and was worried that despite gorging myself on high calorie food, I could not even maintain my weight, never mind gain any. This doctor said it was probably nothing to worry about as I am young and healthy. At this time I had never heard of coeliac disease.
Not too long afterwards my sister started experiencing similar symptoms and saw our usual family GP who gave her a battery of tests. Her coeliac test game back positive which led to me looking into coeliac disease and realising how well it could explain the problems I was experiencing. I went to the same doctor who duly gave me tests for coeliac, iron levels, and inflammatory bowel disease - and expressed surprise that I'd had no such tests.
After waiting what seemed like an age, all my tests finally came back. To my annoyance, the coeliac test was negative. I was so hopeful that I might have found the answer to my problems that I felt somewhat defeated, and sure that I was just going to by palmed off again as a time waster. The only thing that came out unusual was my iron levels, which were low. As a 25 year old man who puts a lot of effort into my diet this seems very difficult to explain.
When I went back to my doctor he took my weight (60kg). Which he noted was a 9kg reduction from the last time I had been measured just five months prior. He also agreed that there was no easy way to explain why my iron levels were so low and told me he was going to refer me for an upper and a lower endoscopy with biopsies. He even said that in his opinion he feels coeliac disease is still the best candidate for the cause of my problems despite the negative blood test.
I must say I feel fantastic that my problems are finally being taken seriously, though I have absolutely no idea what my endoscopies throw up. I really hope it turns out to be coeliac as it could be something much worse or even worse it could be inconclusive in which case I have no idea what might happen next.
I wonder, has anyone else had an experience like this where their symptoms indicated the need for biopsy even after a negative blood test. If so what was the result? Are there any other conditions that might turn up which would cause the same profile of symptoms?