Gi Doc Appointment, Questions To Ask

[kayo]

My appointment with Dr. Cheney of the Celiac Center at Beth Israel Deaconness Medical Center (Boston MA) is finally coming up this week. I've waited about 5 months for this appointment. I'm looking forward to working with their nutritionist too.

When I made the appointment way back in November I did not yet have my enterolab results. I now know that the bloodwork shows a gluten and soy intolerance (in addition I am super lactose intolerant).

My dairy, gluten and soy free diet is going very well and I have never felt better. I've lost a lot of inflammation and space, rather than weight. So many of my symptoms are simply gone.

I have been so disappointed in the past couple of years with trying to get a doctor to acknowledge and understand these food intolerances and how they affect my overall health, my RA (rheumatoid arthritis) & Sjogren's. I've been rying to figure this out for years to no avail. I'm worried my hopes are up that Dr. Cheney will be the doc who finally helps figure this out.

I'm preparing a list of questions before I go but having a hard time organizing my thoughts. I feel like I've been shot down by so many docs who just want to shove pills down my throat. They have no interest in learning or understanding the why's. That's what I want from this appointment. Someone who will join me in figuring out if it's celiac or non-celiac, is it Crohn's, colitis? etc. To me IBS, which I was diagnosed with bout 5 years ago, doesn't mean a thing. It's just a lazy diagnosis too easily handed out.

So what types of things would you ask? or types of things you have asked your own GI doc?

Got any tips for me before I take the plunge?

I'm not sure I want to have the scope done. It seems invasive and I can't tolerate general anesthesia due to RA complications. Also, I'm not willing to go back on dairy, soy or gluten just to have testing done. So I'm wondering what this doc can do for me that I haven't done myself by sticking to the diet.

Thank you in advance for your input!

I'll be sure to update this post after my appointment too.

[Mac55]

Good luck with your appointment! I really don't have any useful info, as I haven't traveled down that road, yet. I'm sure others will be able to help. I'm thinking of go BI too. My neurologist and endocrinologist are there and it seems like they have a pretty good Celiac Center. I'll be very interested to hear how your appt goes. I hear you on not just wanting to shove meds down your throat. My experiences with other departments there has been very good. At my last neuro appointment (for silent migraines) they even told me they don't like to keep people on meds long-term and hope to find the cause. Both also call me directly. One just called the other day to check on me after my mom was there for her appointment. Can't ask for better care than that. Good luck! I'd love to hear an update!

[Mac55]

Just saw the date on your post. How did your appointment go??