Hi all,
Here's the scoop on my visit to the GI today for my results. Apart from the CT scan results, I didn't learn very much more than I already knew. I got all my questions answered, pretty much.
The CT scan didn't show anything abnormal or things growing where they shouldn't. Big sigh of relief there. And no organs pushing against the stomach or intestines which is something he thought might be occurring.
He confirmed the diagnosis of MC (LC). He also confirmed the severe inflammation in my stomach (GERD diagnosis last year).
He has half a dozen MC patients so he's familiar with it and was speaking with some knowledge.
I asked about Entocort but he doesn't want me on it yet and would not prescribe it. He says that's a later treatment. First he wants me on Pentasa (aka Asacol?), 8 500 mg tablets a day (4 times 2). He's also sending me for yet more bloodwork. I'm just happy to get something that addresses the inflammation not the symptoms.
My pharmacist, who has Crohn's so knows all those drugs very well, said IHO this is the right prescription for now. She's the first to say something if she doesn't agree, and often tells you what to say to the GP.
To my surprise the GI did agree that diet plays a part in making MC worse, and although the colonoscopy didn't show gluten damage, he does think that I might well have it at least for now, especially as a gf diet has helped me. His position seems to be that because my LC is so bad, gluten is causing a problem. If we can control the LC, he says, I may be able to have gluten again. We'll see. Same with dairy. This is better than a denial that diet is involved! A bit of fence sitting from him perhaps as I was adamant that diet did matter and being gf was really helping.
He admits it's trial and error working out what works for each patient. At least he's honest that he doesn't know yet how to improve it for me. We start with the Pentasa and work our way through the recommended drugs. I've to go back in 30 days.
Results of my GI visit
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Results of my GI visit
Maxine
It's too bad he's reluctant to prescribe Entocort, but it does sound like he's more familiar than most GIs with MC. At least he recognizes a relationship between diet and MC. But he doesn't that eliminating gluten is permanent for most of us.
Gloria
Gloria
You never know what you can do until you have to do it.

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