It's been awhile since I've checked in here, but it's been a very trying year. I was first diagnosed with mastocytic enterocolitis back in June of 2011. Since then I have had a small bowel follow through, upper scope, serology testing and a pill cam...and finally have a changed diagnosis to Crohn's disease.
The first test that showed the Crohn's was actually the serology testing (from Prometheus Labs). Then finally after finding nothing (besides a hiatal hernia) with the other test my doctor decided a pill cam was in order.
It showed inflammation in my distal small bowel, and now have my official diagnosis of Crohn's disease.
I returned because my symptoms weren't getting any better. I had HORRIBLE joint pain, eye problems, migraines, and all kinds of pain all over...he suspected Crohn's even though I had the positive mastocytic enterocolitis....and he was right.
Just wanted to give everyone an update, and I hope all is well!!!
Update
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Hi Mendy,
Well, that's a heck of a note, to say the least. I wonder if your doctor is aware that MC, (and probably, ME, as well), is also very active in the terminal illeum. I wonder if he could be looking at the inflammation of MC, and mistaking it for Crohn's. Did he take biopsies to confirm Crohn's? That's a new blood test, and it might not be as specific as they seem to think it is. It might trigger on MC, as well.
I'm not trying to claim that you don't have Chron's - I'm just wondering if he could have misinterpreted the evidence. In some cases, unless bleeding or obvious gross lesions are present, it's difficult to tell the difference - even under the microscope. Of course, any Crohn's treatment should treat the MC, also.
Thanks for the update
Tex
Well, that's a heck of a note, to say the least. I wonder if your doctor is aware that MC, (and probably, ME, as well), is also very active in the terminal illeum. I wonder if he could be looking at the inflammation of MC, and mistaking it for Crohn's. Did he take biopsies to confirm Crohn's? That's a new blood test, and it might not be as specific as they seem to think it is. It might trigger on MC, as well.
I'm not trying to claim that you don't have Chron's - I'm just wondering if he could have misinterpreted the evidence. In some cases, unless bleeding or obvious gross lesions are present, it's difficult to tell the difference - even under the microscope. Of course, any Crohn's treatment should treat the MC, also.
Thanks for the update
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Tex, before I even got diagnosed I had a CT scan show inflammation of the colon in general. I have believed all along I had Crohn's and not the other. As far as the serology test, they ran the one specific to tell if it's UC or Crohn's. It is supposed to have over a 95% accuracy.
He is aware that it can affect the terminal illeum, and thats why it took so many test for the diagnosis.
Thanks for the reply:)!! I am starting ASACOL HD 800 mg 3x daily..so hope it does provide some relief:)!
Take care!
He is aware that it can affect the terminal illeum, and thats why it took so many test for the diagnosis.
Thanks for the reply:)!! I am starting ASACOL HD 800 mg 3x daily..so hope it does provide some relief:)!
Take care!
OK, I'm convinced. You may need something besides the Asacol, though, because mast cells tend to cause the same problems with Crohn's or UC, that they cause with MC. IOW, you may need to treat the mast cell problem, which caused the original ME diagnosis, in order to get all your symptoms under control. A Crohn's disgnosis doesn't negate a diagnosis of ME, it merely confirms the reason why it exists.
Other members of this board have found that after they get the inflammation that's causing the Crohn's, (or any other IBD), under control, their symptoms become a major problem, unless they address the mast cell problem, and get that under control. Hopefully, Joe will see your post, and respond, since he was/is in a similar situation, and he's had a lot of experience with that.
Good luck with your treatment.
Tex
Other members of this board have found that after they get the inflammation that's causing the Crohn's, (or any other IBD), under control, their symptoms become a major problem, unless they address the mast cell problem, and get that under control. Hopefully, Joe will see your post, and respond, since he was/is in a similar situation, and he's had a lot of experience with that.
Good luck with your treatment.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Thanks for posting that, because I wondered exactly the same thing - I doubt that enough Asacol is released in the ileum to do much good, (but it's great for treating the terminal colon, where UC originates). I hesitated to bring it up, though, because I had already made so many "second-guessing" comments about her GI doc, that I thought it looked as though I was unfairly criticizing his performance.Zizzle wrote:I'm wondering why they put you on Asacol HD. That's usually used for UC and less for Crohns.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hey Zizzle and Tex. I wondered the same thing, so have no worries about questioning that. I also belong to crohnsforum.com the support group for people with Crohns. Believe it or not, it's one of the first drugs they try most Crohn's patients on. In studies it has been proven to be effective in both, although it remains mostly a treatment for UC.
They even have a sub forum for people on Asacol...and I found out that it has helped so many people with various IBD.
I have questioned my GI doc too Tex, but so far he seems right on the money (at least compared to what some other people have had to go through to get a diagnosis)
Thank you guys again:)!!
They even have a sub forum for people on Asacol...and I found out that it has helped so many people with various IBD.
I have questioned my GI doc too Tex, but so far he seems right on the money (at least compared to what some other people have had to go through to get a diagnosis)
Thank you guys again:)!!