Hi everyone,
I'm beginning to think that I should really be tested for mast cell activation disorder or whatever other issues might crop up around mast cells. But how do I go about doing this? Do I have to go to a mast cell specialist? I know there are some very good doctors in the Boston area. Or do I go to my PCP first?
Thanks!
Elizabeth
Mast cell testing
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Hi Elizabeth,
Only a handful of doctors in this country are qualified to treat mast cell issues. As you are apparently aware, most of them are located at Brigham and Women's Hospital, but a few are scattered across the country.
This list includes a few of them, but there are others at that institution, or who have been trained there:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=14421
Most allergists are not going to be able to help you, and very few GI docs are up to speed on this, though that should change, as time goes on.
Good luck, and please keep us posted
Tex
Only a handful of doctors in this country are qualified to treat mast cell issues. As you are apparently aware, most of them are located at Brigham and Women's Hospital, but a few are scattered across the country.
This list includes a few of them, but there are others at that institution, or who have been trained there:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=14421
Most allergists are not going to be able to help you, and very few GI docs are up to speed on this, though that should change, as time goes on.
Good luck, and please keep us posted
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.
That's true for most issues, but I'm not sure that will apply to mast cell problems. Doctors who don't know how to treat mast cell issues are also not likely to know which tests to use, or how to interpret the results, so that's sort of a variation of a Catch-22 situation. Maybe Mary Beth or Julie can shed some light on your situation.
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.
My GI did some blood work to ck my histamine levels. He is on vaca so I am now just waiting on my results. I am in the Boston area so I am seeing a GI at Bringham's that is familiar with GI related mast cells. My appt is not until the end of April though. Ill let you know when i hear back from m y regular GI about my histamine levels though..
Jenny
Jenny
That would be really helpful, Jenny. I live in the Boston area and would be very interested to hear who you're working with. I don't have a GI because my experience has been that they're completely useless unless you want medication, which up to this point I really haven't wanted, and which is out of the question until after I give birth and stop breast feeding. IOW, not for quite awhile. But if you have someone good who also work with mast cell issues, I'd be really interested to hear who it is.
BTW, if I don't have a GI, would you recommend going to my pcp first to request testing? I can guarantee she won't know anything about what I'm talking about.
BTW, if I don't have a GI, would you recommend going to my pcp first to request testing? I can guarantee she won't know anything about what I'm talking about.
If you are able to see one of GI docs at BWH in Boston, that is absolutely your best bet! BWH is where the Center for Excellence for Mastocytosis is housed, so you will literally be working with the best of the best when it comes to understanding mast cell disorders. I have heard excellent reviews of both Dr. Greenberger (well recognized in the international community for his work on mast cells) and Dr. Matthew Hamilton (up and coming in the mast cell world) both of whom are gastros. Either one of them would be an excellent option and I guarantee they will be able to figure out if any of your issues are mast cell related.
Please let us know how your appointment(s) go and what they find in terms of potential mast cell involvement.
Good luck!
Julie
Please let us know how your appointment(s) go and what they find in terms of potential mast cell involvement.
Good luck!
Julie
Well, guess what?! I called the Brigham to make an appointment with Dr. Hamilton today, and they told me the earliest appointment was May 25. So then I got off the phone, and I thought, what if I tell them I'm pregnant - would that make a difference? So I called back, and the woman who answered the phone said she would see whether it was possible, but that she really couldn't guarantee anything. A few hours later she called back to tell me Dr. Hamilton has an opening THIS THURSDAY at 11 am! Wow! I haven't seen a doctor for my colitis since I was diagnosed 10 years ago, and I am so relieved to be seeing someone who could address both the colitis and the potential mast cell issues.
I'll let you all know what I hear. In the meantime, a huge thank you to everyone who keeps this board alive and vibrant and so incredibly trustworthy. I haven't needed a doctor for all of this years because I've been able to come here. Thank you, thank you.
I'll let you all know what I hear. In the meantime, a huge thank you to everyone who keeps this board alive and vibrant and so incredibly trustworthy. I haven't needed a doctor for all of this years because I've been able to come here. Thank you, thank you.
Beth,
Given your upcoming appointment, I thought you might like to have a copy (if you don't already have one) of the mast cell article that Dr. Hamilton co-authored last year. His fellow authors; Dr. Akin, Dr. Castells and Dr. Greenberger are the "royalty" of mast cell researchers and practitioners. It's a group with extensive credentials.
The paper discusses the up and coming diagnosis of mast cell activation syndrome. (MCAS, which is my diagnosis.) Doctors are working on coming to an agreement/understanding of MCAS diagnostic criteria, which is the focus of Dr. Hamilton's paper.
Here's the link: http://download.journals.elsevierhealth ... 006750.pdf
Great job getting that appointment so quickly! Please let us know how it goes.
Good luck,
Julie
Given your upcoming appointment, I thought you might like to have a copy (if you don't already have one) of the mast cell article that Dr. Hamilton co-authored last year. His fellow authors; Dr. Akin, Dr. Castells and Dr. Greenberger are the "royalty" of mast cell researchers and practitioners. It's a group with extensive credentials.
The paper discusses the up and coming diagnosis of mast cell activation syndrome. (MCAS, which is my diagnosis.) Doctors are working on coming to an agreement/understanding of MCAS diagnostic criteria, which is the focus of Dr. Hamilton's paper.
Here's the link: http://download.journals.elsevierhealth ... 006750.pdf
Great job getting that appointment so quickly! Please let us know how it goes.
Good luck,
Julie
Elizabeth,
Good thinking!
Good luck with the appointment. It should be an exceptional learning experience.
Tex
Good thinking!Good luck with the appointment. It should be an exceptional learning experience.
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.
I read that paper by Dr Hamilton and colleagues with great interest. Had to keep reading the abbreviation MC as Mast Cell though and not Microscopic Colitis!
I've also read a fascinating article on histamine, mast cells and the enteric nervous system here http://gut.bmj.com/content/55/4/445.full
The author mentions quite a few histamine receptors in the article. I had no idea there were so many.
I've also read a fascinating article on histamine, mast cells and the enteric nervous system here http://gut.bmj.com/content/55/4/445.full
The author mentions quite a few histamine receptors in the article. I had no idea there were so many.
I found this forum after researching mastocytosis on behalf of my mom and I was curious to hear how Beth's appointment went.
My mom has yet to be diagnosed with mast cell disease but carcinoid has been ruled out and a tryptase test is next. She has been to so many doctors I can't count them all anymore and a gastro she went to for a second opinion now thinks it could be masto. She is currently on prednisone so was told she can't take the tryptase test until she is off that drug. She is so miserable and has been for so many months now, that she threatens to overdose on her sleeping medication almost every other day.
I called Dr. Castell /Akin and no appointments were available until June so I tried Dr. Hamilton thinking since he is newer, we might get seen faster but alas, also was told not until June! I don't know if my Mom will make it until then and I am desperate to help her. We live in NJ and I can't believe that there is not a single doctor in the tri-state area who can help us with this disease.
Her symptoms include flushing, chest pain, severe cramping. Mostly acts up in the middle of the night which has led to sleep deprivation, foggy brain, and severe anxiety. My personal belief is that this was all set off for her due to intense stress (she cared for my Dad for the past 18 months until he passed from pancreatic cancer) and a routine endoscopy. I have read that the anesthesia used during endoscopy could actually be a trigger for masto.
Anyway, if anyone has any words of advice please do share. I may post this in the general forum area but I was curious to hear if Drs Castell and Hamilton worked out for Beth because at this moment, I would spend every $ in my savings account just to get an appointment with these experts.
My mom has yet to be diagnosed with mast cell disease but carcinoid has been ruled out and a tryptase test is next. She has been to so many doctors I can't count them all anymore and a gastro she went to for a second opinion now thinks it could be masto. She is currently on prednisone so was told she can't take the tryptase test until she is off that drug. She is so miserable and has been for so many months now, that she threatens to overdose on her sleeping medication almost every other day.
I called Dr. Castell /Akin and no appointments were available until June so I tried Dr. Hamilton thinking since he is newer, we might get seen faster but alas, also was told not until June! I don't know if my Mom will make it until then and I am desperate to help her. We live in NJ and I can't believe that there is not a single doctor in the tri-state area who can help us with this disease.
Her symptoms include flushing, chest pain, severe cramping. Mostly acts up in the middle of the night which has led to sleep deprivation, foggy brain, and severe anxiety. My personal belief is that this was all set off for her due to intense stress (she cared for my Dad for the past 18 months until he passed from pancreatic cancer) and a routine endoscopy. I have read that the anesthesia used during endoscopy could actually be a trigger for masto.
Anyway, if anyone has any words of advice please do share. I may post this in the general forum area but I was curious to hear if Drs Castell and Hamilton worked out for Beth because at this moment, I would spend every $ in my savings account just to get an appointment with these experts.
Hi Seneca,
I'm so sorry to hear about your mom's struggles.
I have a mast cell disorder (mast cell activation syndrome) as do a few of us here. I'm far from an expert but I do have some experience in that area. It sounds like your mom's doctor is going in the right direciton. Ruling out carcinoid is an important step when considering mast celll disorders. Getting a baseline tryptase level is also important. The next natural step is for your mom to try going on anti-histamines (assuming these are not contraindicated for some reason) both H1 and H2. (Zyretc and Zantac for example.) The gastro could easily put your mom on a trial of these meds if he/she is suspicious that this is a mast cell disorder. My gastro was also the phyisican that diagnosed my mast cell disorder. He started me off on the H1/H2 regime immediately and also consulted an allergist for guidance.
I see no reason why your mom's gastro couldn't consider the H1/H2 approach and perhaps call one of the specialists for consultation. There is the group up in Boston, but there are others as well. My best suggestion is that you visit the mast cell forum where they have a list of mast cell specialists throughout the country and see if someone else might be available to see her or at least consult on the case. The mast cell specialist I saw in S. Carolina (Dr. Lawrence Afrin) generally makes himself very available to physicians that are in need of consultation, so that might be an option as well.
Here's the site for the forum: http://mastcelldisorders.wallack.us/yabb/YaBB.pl
I'm so sorry to hear about your mom's struggles.
I have a mast cell disorder (mast cell activation syndrome) as do a few of us here. I'm far from an expert but I do have some experience in that area. It sounds like your mom's doctor is going in the right direciton. Ruling out carcinoid is an important step when considering mast celll disorders. Getting a baseline tryptase level is also important. The next natural step is for your mom to try going on anti-histamines (assuming these are not contraindicated for some reason) both H1 and H2. (Zyretc and Zantac for example.) The gastro could easily put your mom on a trial of these meds if he/she is suspicious that this is a mast cell disorder. My gastro was also the phyisican that diagnosed my mast cell disorder. He started me off on the H1/H2 regime immediately and also consulted an allergist for guidance.
I see no reason why your mom's gastro couldn't consider the H1/H2 approach and perhaps call one of the specialists for consultation. There is the group up in Boston, but there are others as well. My best suggestion is that you visit the mast cell forum where they have a list of mast cell specialists throughout the country and see if someone else might be available to see her or at least consult on the case. The mast cell specialist I saw in S. Carolina (Dr. Lawrence Afrin) generally makes himself very available to physicians that are in need of consultation, so that might be an option as well.
Here's the site for the forum: http://mastcelldisorders.wallack.us/yabb/YaBB.pl