How Much Should A Gi Understand About Celiac?

[Asharia]

I have recently moved and had to get a new GI doctor. My first appointment with her (back in March) left such a bad taste in my mouth, I haven't been back. She accused me of knowingly cheating on my gluten-free diet because my antibodies were up, and didn't believe me when I said I wasn't. Now, six months later, after being even more strict about my diet I've had no resolution of antibodies or symptoms. I called the office and set up an appointment, and even the receptionist asked me if I was cheating!

I'm dreading talking to these people tomorrow - is it possible a newly-trained gastroenterologist (she is in her mid 20s) doesn't yet know that people with celiac have varying degrees of symptoms and sensitivities? Should I expect her to know/understand about cross contamination issues?

I know the easy answer is to find a new doctor.. but the 'intake' appointments are always booked months in advance, so it's a lot easier to stick with the same person.

[Skylark]

Yes, it's absolutely possible that a newly trained doctor hasn't seen enough people to understand about varying degrees of sensitivity. Also, cheating on the gluten-free diet is really, really common. People who cheat and try to lie about it are much more common in her office than super-sensitives. You have to be firm with her, explain that you understand that most of the people she sees with antibodies that stay high are cheating or misunderstanding the diet, but that you are being quite careful and think you understand what to eat. It may take a little work because she's seen antibodies fall with most people who are reasonably careful.

Ask her for help troubleshooting to get her on your side. Maybe she will have some insight. Also feel free to post what you're doing and eating here. We might be more use than your GI.

Could there be gluten in a medicine, a vitamin, a cosmetic, your shampoo? Are you eating too much processed "gluten free" food (that often has ppm traces of gluten) when you're someone who might need to eat ONLY naturally gluten-free food you cook yourself? Is your whole house gluten-free? Did you throw away old cutting boards, scratched up pots, wooden spoons, and other things you can't really scrub clean? Is the pet food gluten-free? Someone was getting CC'd from dog food. Have you completely stopped eating out? Do you get your spouse to brush teeth before kissing if he/she has had gluten food? These are all things that have gotten people on the board.

[melikamaui]

I went through a similar issue. Our pediatric GI did not believe that I knew how to "properly administer" (his words, not mine) a gluten-free diet to my child. He said it was "too hard" and that "basically no one gets it right". When I assured him that I knew we were 100% gluten-free he didn't believe me. Not until the tests results proved it. The he ate a lot of crow. If you are absolutely certain that you're not getting CC'd somehow, stick to your guns. Doctors need to start listening better and believing what we say.

[peeptoad]

Yes, it's absolutely possible that a newly trained doctor hasn't seen enough people to understand about varying degrees of sensitivity.

Well, that would explain my GI doctor I suppose.