Reflux is pretty common, actually, although I totally understand your implicit connection between that and the gluten sensitivity.
I think when DRs are looking for celiac disease they are looking for a specific kind of damage to the villi in the small bowel, which is not consistent with what you have.
Entocort treats inflammation in the terminal ileum. about 80% of people with Crohn's have inflammation in the terminal ileum. I'm just making connections, not a diagnosis.
There are many people turning up with sensitivity to gluten that is not celiac disease. Wikipedia has some good information on this topic, although it is pretty technical. I am not certain how you could tell on scope the difference between someone who is gluten sensitive and someone who has celiac disease - I mean, are my villi damaged by gluten exposure? I don't think so. But I am clearly gluten sensitive. My rheumatologist did all kinds of bloodwork on me 5 years ago and swore I did not have celiac disease - he was very surprised at my last visit (a month ago) when I reported that I had significant improvement after 6 months on a gluten-free diet.
Lactose intolerance is also very, very common. In fact, every human being produces lactase (the enzyme required to digest lactose) as an infant, and then gradually produces less lactase as they age. With the exception of people descended from northern Europeans, almost everyone will be lactose intolerant to some degree in adulthood. Lactose intolerance may wax and wane day to day, meal to meal. However, if you have inflammation in the terminal ileum, where a lot of lactase is normally produced, you are probably going to be much more sensitive to lactose than you would be otherwise. That's my experience, anyway. My lactose intolerance was really the first symptom I had of Crohn's. Currently I am not very sensitive to lactose at all, and even had ice cream this past weekend without nausea. That's big news for me! I'm sure it is because my inflammatory bowel disease seems to be in remission, maybe helped by the fact that I've been gluten free for more than 6 months now.
Back to reflux. Sometimes our stomachs make too much acid, or the valve at the bottom of the esophagus is too relaxed. Take a ppi for a few weeks (like Prilosec) and see if you feel better. My reflux was worst when my inflammatory bowel disease was flaring. Now it's really not a problem.
49 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Pentasa (3g/day)Colazal (9 pills/day), Sulfazine (1.5 g/day), Prevacid, folic acid, vit. D (2K iu), flax seed oil (2 tsp/day), mesalamine enema as needed. Gluten free as of 5/30/11.