For residents in London and the South of the UK, I would recommend the Gastroenterology Dept at St Mary's Hospital, Paddington, London.
Quick to biopsy, good lab for results and interpretation and great open-minded advice on trying out therapies.
List Of Recommended Doctors
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Thanks. I hope I listed their address details correctly. Their website is a bit unusual - I had to track down their address on another site, but I think I found the correct address.
Tex
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.
Does anyone know of a good MC doctor in the Dallas area? I live in Tyler (2 hours away) and we do have GI doctors but they do not see the variation that a doctor in Dallas would see.
-WHYCLEF
RX: Hyoscamine, WelChol, Citrucel, Paxil
TESTS: Colonoscopy (3), Endoscopy (1), Flex Sig (1), Pill Cam (1), Abdominal CT (2), Stool Test (5)
DX: Reactive Arthritis (01/2009), Microscopic Colitis (01/2012)
RX: Hyoscamine, WelChol, Citrucel, Paxil
TESTS: Colonoscopy (3), Endoscopy (1), Flex Sig (1), Pill Cam (1), Abdominal CT (2), Stool Test (5)
DX: Reactive Arthritis (01/2009), Microscopic Colitis (01/2012)
Tex,
Can't say for sure if they meet all your criteria but here are my recommendations based on personal experience:
Dr. David Doman, gastroenterologist, Silver Spring, MD. (About 10 to 15 minutes from DC and about an hour from Baltimore.) Teaches at GWU Med School in DC; co-authored the article I have previously posted here on mastocytic enterocolitis. Had the experience and insight to biopsy my gut for excessive mast cells during a colonoscopy which ultimately resulted in my diagnosis of mastocytic enterocolitis.
Dr. Lawrence Afrin, hematologist, Medical University of South Carolina, Hollings Cancer Center, Charleston, SC.
Highly recommend Dr. Afrin for anyone suspecting they have a systemic mast cell issue. I have previously posted Dr. Afrin's article on mast cell activation disorder and I recently went to see him for a consultation. I was equally impressed with him and MUSC as a facility. I wouldn't hesitate to recommend Dr. Afrin for someone seeking a consultation on systemic mast cell issues.
Great idea...hope this helps!
Julie
Can't say for sure if they meet all your criteria but here are my recommendations based on personal experience:
Dr. David Doman, gastroenterologist, Silver Spring, MD. (About 10 to 15 minutes from DC and about an hour from Baltimore.) Teaches at GWU Med School in DC; co-authored the article I have previously posted here on mastocytic enterocolitis. Had the experience and insight to biopsy my gut for excessive mast cells during a colonoscopy which ultimately resulted in my diagnosis of mastocytic enterocolitis.
Dr. Lawrence Afrin, hematologist, Medical University of South Carolina, Hollings Cancer Center, Charleston, SC.
Highly recommend Dr. Afrin for anyone suspecting they have a systemic mast cell issue. I have previously posted Dr. Afrin's article on mast cell activation disorder and I recently went to see him for a consultation. I was equally impressed with him and MUSC as a facility. I wouldn't hesitate to recommend Dr. Afrin for someone seeking a consultation on systemic mast cell issues.
Great idea...hope this helps!
Julie
Hi Julie,
I'll look up their contact info and list them.
One question - is Dr. Doman qualified for listing as a regular MC gastroenterologist, or are mast cell issues his thing?
Thanks,
Tex
I'll look up their contact info and list them.
One question - is Dr. Doman qualified for listing as a regular MC gastroenterologist, or are mast cell issues his thing?
Thanks,
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.
Sure. Here's a list for MC:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=14420
and here's a list for mast cell issues associated with MC:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=14421
Please be aware that a much higher percentage of us is affected by mast cell issues, than is commonly recognized. IMO, (and this is supported by research documentation), at least 70% of us have some degree of mast cell-associated issues.
Tex
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=14420
and here's a list for mast cell issues associated with MC:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=14421
Please be aware that a much higher percentage of us is affected by mast cell issues, than is commonly recognized. IMO, (and this is supported by research documentation), at least 70% of us have some degree of mast cell-associated issues.
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 very much Tex. I wasn't even aware before reading this board that mast cells could be an issue.
I have sent a note off asking the doctor to re-stain the old biopsies for tryptase. My primary care doc doesn't have a clue about this stuff, but can at least ask the pathologist, if they still have the slides, to re-stain them. If the pathologist diagnoses mastocytic enterocolitis, I will know that at least a year ago I also had mast cell problems, and I can assume I still do.
This might explain why a chocolate bar, although it has no ingredients identified as problematic by Enterolab seems to really do a number on me.
Boy, without tracking all of this down, I didn't have a hope of getting better.
I figure that at this point, I need to get a doctor who can offer some actual help.
Thank you again for your support.
--T
I have sent a note off asking the doctor to re-stain the old biopsies for tryptase. My primary care doc doesn't have a clue about this stuff, but can at least ask the pathologist, if they still have the slides, to re-stain them. If the pathologist diagnoses mastocytic enterocolitis, I will know that at least a year ago I also had mast cell problems, and I can assume I still do.
This might explain why a chocolate bar, although it has no ingredients identified as problematic by Enterolab seems to really do a number on me.
Boy, without tracking all of this down, I didn't have a hope of getting better.
I figure that at this point, I need to get a doctor who can offer some actual help.
Thank you again for your support.
--T
Two other questions (for now):
1) Are all the doctors on the list accepting of the Enterolab results? I ask because it's good to be prepared if they are skeptical, but it would be nice not to have to weather the skepticism.
2) If I have mast cell issues, do I also need to find an allergist and look for environmental stuff? As I said, I don't have a lot of obvious allergies, and I'd love to NOT collect another doctor, but if it would help, I'll do it.
I hope you're having a great Sunday!
--T
1) Are all the doctors on the list accepting of the Enterolab results? I ask because it's good to be prepared if they are skeptical, but it would be nice not to have to weather the skepticism.
2) If I have mast cell issues, do I also need to find an allergist and look for environmental stuff? As I said, I don't have a lot of obvious allergies, and I'd love to NOT collect another doctor, but if it would help, I'll do it.
I hope you're having a great Sunday!
--T
I can't answer question 1. I know that doctor Lewey supports those tests, but I don't have any information on the others, unfortunately.
Except for the allergists on that list, the odds of finding an allergist who understands the connection between mast cell activation disorder and MC, are mighty slim, IMO. Just finding an allergist who understands what mast cell cell activation disorder, (MCAD), is, would be a mighty lucky find. A few of them might recognize systemic mastocytosis, but few of us have a systemic problem.
If you can control the GI mast cell issues, then the classical upper respiratory allergy symptoms shouldn't be a problem - a simple type 1 antihistamine should take care of those. I'm having to do that right now, because of tree pollen here in Texas.
Tex
Except for the allergists on that list, the odds of finding an allergist who understands the connection between mast cell activation disorder and MC, are mighty slim, IMO. Just finding an allergist who understands what mast cell cell activation disorder, (MCAD), is, would be a mighty lucky find. A few of them might recognize systemic mastocytosis, but few of us have a systemic problem.
If you can control the GI mast cell issues, then the classical upper respiratory allergy symptoms shouldn't be a problem - a simple type 1 antihistamine should take care of those. I'm having to do that right now, because of tree pollen here in Texas.
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.
Good luck with the tree pollen. It's too bad our bodies react to some of this common stuff!
I see what you are saying about finding a knowledgeable doctor. MCAD seems like quite specialized understanding. I will stick with the doctors on the list, because it's frustrating to know more than the doctor! If the doctor doesn't "believe in" Enterolab, I don't really need that validation.
Thanks again!
--T
I see what you are saying about finding a knowledgeable doctor. MCAD seems like quite specialized understanding. I will stick with the doctors on the list, because it's frustrating to know more than the doctor! If the doctor doesn't "believe in" Enterolab, I don't really need that validation.
Thanks again!
--T