So I was diagnosed in 2003, have been extremely faithful to gluten-free diet, and along the way found that I couldn't tolerate dairy either. Two years ago I had a followup biopsy and was told my gut had "healed completely".
However, I never gained any weight. My BMI is 19, just above NIH "underweight" category.
Then, in December, I went to ER with fever, chills and extreme organ pain (mostly in the areas of the kidneys and liver/gall bladder). I'd been having mild organ swelling intermittently for years, and now it's suddenly become rather severe.
I had blood work, CT scan, ultrasound, and everything checked out fine. No heightened IG's either. Mild anemia. Doctor is saying there's a chance I was misdiagnosed with sprue (he's owning it, he was the guy who dx'ed me the first time) and I may have Crohn's instead. He's getting me the genetic test, which I didn't have the first time (diagnosed via biopsy).
I haven't been back to the ER, but I've got regular mild organ pain and sometimes have trouble swallowing or urinating.
After reading a couple of other posts, I've begun to avoid citrus and alcohol, and I'm focusing on drinking plenty of water. All of *seems* to help, but it's really hard to say. My naturopath has had me on an herbal tonic, too.
Has anyone else had similar problems? Anything that made it better?