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Thanks everyone!
We leave tomorrow on our big adventure. It has been in the 70s here and we are looking at 20s-30s and snow. Looking forward to the change and getting my fill of real winter. I'm sure I'll be checking in while we are gone but just in case . . . have a great holiday.
Love,
Mary Beth
Mast Cells . . . again
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Are you going to see Dr. Castells at Brigham and Women’s? I have spent a little time on another board where she comes highly recommended. If so, I hope you are able to spend a fair amount of time with her and are able to ask all of your questions. I will be very interested to read what you have to say following your appointment.
At my last appointment with Dr. Lewey, he told me that after another couple of months of treatment with gastrocrom, I should be back to “normal” and can begin to wean off all medications. After that, I shouldn’t have any more problems although I might have an occasional flair. Of course, he did allow for the possibility that I have food sensitivities, which my complicate things. We’ll address that possibility if my D continues beyond the next two months. Although this prognosis seems to contradict some of what I have read, I am optimistic that my mast cells will be under control soon.
Have a good trip and enjoy the weather.
At my last appointment with Dr. Lewey, he told me that after another couple of months of treatment with gastrocrom, I should be back to “normal” and can begin to wean off all medications. After that, I shouldn’t have any more problems although I might have an occasional flair. Of course, he did allow for the possibility that I have food sensitivities, which my complicate things. We’ll address that possibility if my D continues beyond the next two months. Although this prognosis seems to contradict some of what I have read, I am optimistic that my mast cells will be under control soon.
Have a good trip and enjoy the weather.
Yes, I am I am seeing Dr. Castells. I got very tired of seeing local doctors who didn't have a clue so I decided it was worth it to wait for an appointment with her. Cem Akin is also at Brigham and Women's and comes highly recommended. One of my main goals is to get an assessment by her so she can then talk to my local allergist. You are lucjy to have Dr. Lewey - he seems like an excellent doctor.
Mary Beth
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
Hello all,
I can certainly relate to your posts about doctors and mast cells. Ever since my biopsy that was positive for mastocytic enterocolitis I have had endless conversations with doctors about mast cells and their role in my health issues. My gastroenterologist, rheumatologist, hematologist and immunologist/allergist...no specialist has been left out of the conversation and their degree of understanding mast cell disorders varies widely. Case in point...
Recently I went to the hematologist for chronic anemia (a potential symptom of systemic mastocytosis - SM) and I asked if the anemia, in conjunction with the biopsy results and GI symptoms, were enough to warrant a bone marrow biopsy. (Diagnostic tool for SM.) My hematologist, who came highly recommended and should know about the implications of mast cells and blood disorders, acknowledged he would have to "reacquaint" himself with SM before he could answer my question. The doctor himself commented (humbly) that I seemed better informed on mast cell disorders than he was. Wish it wasn't that way, but I've come to expect this when dealing with mast cell issues. Frustrating to be sure, but not surprising; at least not anymore.
Mary Beth, I hope your trip was valuable. I've exchanged emails with Dr. Castells and like yourself am wondering if the time/expense would be worth a visit to Boston. Once the dust settles from your trip please let us know how it went. I hope you found it helpful!
Julie
I can certainly relate to your posts about doctors and mast cells. Ever since my biopsy that was positive for mastocytic enterocolitis I have had endless conversations with doctors about mast cells and their role in my health issues. My gastroenterologist, rheumatologist, hematologist and immunologist/allergist...no specialist has been left out of the conversation and their degree of understanding mast cell disorders varies widely. Case in point...
Recently I went to the hematologist for chronic anemia (a potential symptom of systemic mastocytosis - SM) and I asked if the anemia, in conjunction with the biopsy results and GI symptoms, were enough to warrant a bone marrow biopsy. (Diagnostic tool for SM.) My hematologist, who came highly recommended and should know about the implications of mast cells and blood disorders, acknowledged he would have to "reacquaint" himself with SM before he could answer my question. The doctor himself commented (humbly) that I seemed better informed on mast cell disorders than he was. Wish it wasn't that way, but I've come to expect this when dealing with mast cell issues. Frustrating to be sure, but not surprising; at least not anymore.
Mary Beth, I hope your trip was valuable. I've exchanged emails with Dr. Castells and like yourself am wondering if the time/expense would be worth a visit to Boston. Once the dust settles from your trip please let us know how it went. I hope you found it helpful!
Julie
Hi Julie,
It's always enlightening to read your insight on mast cell issues. I see that you've discovered one of the downsides of becoming an expert on a rare issue - you've severely narrowed the field of potential consultants.
I doubt that's a bad thing, though.
I hope you're having good success keeping your symptoms under control.
Tex
It's always enlightening to read your insight on mast cell issues. I see that you've discovered one of the downsides of becoming an expert on a rare issue - you've severely narrowed the field of potential consultants.
I doubt that's a bad thing, though.I hope you're having good success keeping your symptoms under control.
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.
Hi Everyone,
Returned from my trip to the northeast last night. We had a wonderful time with family and friends and even got to enjoy the snow for a bit. Luckily we didn't get snowound.
My visit with Dr. Castells went well. She finally confirmed mast cell activation disorder (took 3+ years to get here). I do not have the clonal type, which is more serious and often leads to cancer. She said that mast cells can get activated after vaccines and viruses and that often this type of MCAD calms down after a period of time, but that can take a few years. I have felt back to normal for a few months now and told her I was concerned about symptoms resurfacing. She referred me to an allergist in Austin that trained with her, Dr. Legere, for some sensitivity testing, mostly for drugs. We also discussed medicines I could use if needed. She and the fellow that is training with her spent a total of 45 minutes with me. She helped me to understand the diease better and answered many questions. I am glad I kept my appointment as I now have someone my local doctors can call for information since no one seems to know much about mast cell disorders..
I suppose it would be worth it for MCers with ongoing symptoms to get the biopsy/tryptase stain when they have a colonoscopy as they can check for clonal MCAD with this test. I had a bone marrow biopsy and wouldn't recommend going this route unless there were other indicators of systemic mastocytosis. I suspect many MCers get some mast cell activation intially but that in time it calms down.
The part that Dr. Castells didn't talk about (and I didn't bring up) was the role of leaky gut. I am certain that I was having related symptoms of food intolerance prior to my flu vaccine. I beleive the leaky gut came first and exacerbated the reaction from the flu shot, which caused a cytokine storm. I have no intention of adding gluten or other reactive lectins back to my diet. However, I see a direct correlation with my mast cells calming down and my ability to tolerate more foods. I had 37 reactive foods on my MRT and I can now eat almost all of them without difficulty.
For those interested in an appointment with Dr. Castells or another doctor in her group, it's a long process. You need to have all records sent to her to review to see if she will accept your case. You can PM me if you want more info on how to do this.
Mary Beth
Returned from my trip to the northeast last night. We had a wonderful time with family and friends and even got to enjoy the snow for a bit. Luckily we didn't get snowound.
My visit with Dr. Castells went well. She finally confirmed mast cell activation disorder (took 3+ years to get here). I do not have the clonal type, which is more serious and often leads to cancer. She said that mast cells can get activated after vaccines and viruses and that often this type of MCAD calms down after a period of time, but that can take a few years. I have felt back to normal for a few months now and told her I was concerned about symptoms resurfacing. She referred me to an allergist in Austin that trained with her, Dr. Legere, for some sensitivity testing, mostly for drugs. We also discussed medicines I could use if needed. She and the fellow that is training with her spent a total of 45 minutes with me. She helped me to understand the diease better and answered many questions. I am glad I kept my appointment as I now have someone my local doctors can call for information since no one seems to know much about mast cell disorders..
I suppose it would be worth it for MCers with ongoing symptoms to get the biopsy/tryptase stain when they have a colonoscopy as they can check for clonal MCAD with this test. I had a bone marrow biopsy and wouldn't recommend going this route unless there were other indicators of systemic mastocytosis. I suspect many MCers get some mast cell activation intially but that in time it calms down.
The part that Dr. Castells didn't talk about (and I didn't bring up) was the role of leaky gut. I am certain that I was having related symptoms of food intolerance prior to my flu vaccine. I beleive the leaky gut came first and exacerbated the reaction from the flu shot, which caused a cytokine storm. I have no intention of adding gluten or other reactive lectins back to my diet. However, I see a direct correlation with my mast cells calming down and my ability to tolerate more foods. I had 37 reactive foods on my MRT and I can now eat almost all of them without difficulty.
For those interested in an appointment with Dr. Castells or another doctor in her group, it's a long process. You need to have all records sent to her to review to see if she will accept your case. You can PM me if you want more info on how to do this.
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
Thanks for the update, Mary Beth!
I'm happy to hear that the consultation was productive. Did you have your biopsy slides sent to Dr. C. ahead? Is that how she knew you didn't have the clonal type? (good news, BTW). I'll bet you knew almost as much as the expert! HAH! Did she give any clue about incidence/prevalence of mastocytic enterocolitis?
What has been the time interval between when you were avoiding the 37 worst offenders and now being able to tolerate them again? Do you try to rotate at this point?
Thanks again.
Love,
Polly
I'm happy to hear that the consultation was productive. Did you have your biopsy slides sent to Dr. C. ahead? Is that how she knew you didn't have the clonal type? (good news, BTW). I'll bet you knew almost as much as the expert! HAH! Did she give any clue about incidence/prevalence of mastocytic enterocolitis?
What has been the time interval between when you were avoiding the 37 worst offenders and now being able to tolerate them again? Do you try to rotate at this point?
Thanks again.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Polly,
Yes, I sent all of my records ahead of time - she requires this before you can get an appointment. The BMB slides were sent but I think just a report of the colon biopsies was forwarded to her.
I didn't think to ask the prevalence of ME . . . wish I had asked that. I suspect it's higher than many realize. It makes sense that all inflammatory mediators will be more active with inflammatory bowel disease and mast cells are part of that response. Systemic masto and clonal MCAD are rare but I suspect non-clonal MCAD is not.
I avoided my 37 foods for 6 months and added them back gradually. I was really afraid to rock the boat at first. I do rotate my foods and try not to overdo any one food. I'm not vigilant about rotating every third day, but when I menu plan for the week I always work in variety. I am also making a big effort to eat foods in season as I think that's part of true paleo eating.
Mary Beth
Yes, I sent all of my records ahead of time - she requires this before you can get an appointment. The BMB slides were sent but I think just a report of the colon biopsies was forwarded to her.
I didn't think to ask the prevalence of ME . . . wish I had asked that. I suspect it's higher than many realize. It makes sense that all inflammatory mediators will be more active with inflammatory bowel disease and mast cells are part of that response. Systemic masto and clonal MCAD are rare but I suspect non-clonal MCAD is not.
I avoided my 37 foods for 6 months and added them back gradually. I was really afraid to rock the boat at first. I do rotate my foods and try not to overdo any one food. I'm not vigilant about rotating every third day, but when I menu plan for the week I always work in variety. I am also making a big effort to eat foods in season as I think that's part of true paleo eating.
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer