Mast Cell Disorders Forum - No Mast Cell Disease Without Proliferation??

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No Mast Cell Disease Without Proliferation?? (Read 5146 times)

Futurehope

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Clermont, Florida

No Mast Cell Disease Without Proliferation??
10/11/14 at 04:42:47

I was trying to pin down my diagnosis after my doctor answered me that I have "allergic gastrointestinal mastocytosis".

Via emails to her LPN, I asked if I have mast cell disease? IOW, is there anything wrong about my mast cells at all such as proliferation, incorrect shape, triggering too easily? Am I just an allergic patient whose mast cells are behaving normally by responding to an allergic trigger?

The response I got from the LPN (after speaking with the doctor) was:
"no cells proliferate. No mast cell activation activation syndrome without proliferation"

Does this sound correct? I thought we could have mast cells that trigger too easily, and that even though there is no proliferation there could be a problem as demonstrated by elevated mediators in the blood, urine or both?

This woman's answer to my question of whether my mast cells are normal or not has gotten me so totally confused and perplexed. I basically have not been told whether my mast cells are normal in all ways or not. I was advised to make another appointment in order to have a discussion with the doctor. I had basically asked, "well are my mast cells normal in every way possible...i.e. no proliferation, no poor shape, no easy triggering?" And, to this minute I have not been told anything. I guess they don't know the answer?

I'm thinking I should change doctors.

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peter Mentor Offline I Love YaBB 2! Posts: 294	Re: No Mast Cell Disease Without Proliferation?? Reply #1 - 10/11/14 at 09:57:53 good question when is mastocytosis a disease or mast cell activation an allergic reaction
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Bruce Hart

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Re: No Mast Cell Disease Without Proliferation??
Reply #2 - 10/11/14 at 16:04:56

Yes you are correct that MCAS is non-proliferative compared to mastocytosis and is tested for by elevated mediators and ruling out other explanations. Though monoclonal MCAS (MMAS) is confirmed by examining mast cells.

From your quote it sounds like the LPN is saying no mastocytosis and no MCAS, but is specifically stating MCAS without proliferation, as in saying "MCAS which has no proliferation", instead of just saying MCAS. Some publications use MCAS as a synonym with the top level MCAD, which I don't like because having a top level term and subtype with the same exact name is confusing. So maybe that's why the LPN said it that way.

Though I don't know how they can rule out idiopathic MCAS. The criteria for it is still tentative and unvalidated to ensure it catches all cases. Many patients who appear to have MCAS but fail to have it confirmed with tests are successfully treated with MCAS-based therapies.

In general, I guess they can reasonably rule out MCAS if they find a better explanation for the symptoms & findings. But in your case I'm not sure they can rule out MCAS unless they discovered you have something such as regular IgE-mediated allergies and identifying & avoiding them resolve your symptoms.

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Futurehope

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Clermont, Florida

Re: No Mast Cell Disease Without Proliferation??
Reply #3 - 10/12/14 at 00:54:17

Bruce, thank you for giving me a possible explanation for the LPN's response.

From my own unscientific explanation.......when an allergist skin tested me for trees, I tested negative. Yet if I read over an explanation for "oral allergy syndrome" which this doctor thinks I have, it says I could be reacting in my mouth to these other allergens. Well, the "normal" allergy testing for these trees and pollens comes out negative for me.

I can guess a few things from all this. Maybe when an allergist is skin testing me for reaction to trees, this skin test says nothing about my reaction to the actual pollen (which apparently causes cross reaction in oral allergy syndrome)? I don't know. Maybe skin testing for tree pollen does not show my gut's reaction to the allergens? Maybe the existing allergy testing is not showing all possible reactions, such as reactions in my digestive system as opposed to the skin? IOW, maybe I have a false negative on my testing for trees?

My current thinking today is that the only true way for me to note my reactions to foods is to do my own testing by challenging myself and waiting and watching for any response. If this is not done in a scientific setting, the allergy doctor cannot "prove" I have an allergy just because I say it is so.

And finally, maybe I do not have the "normal" IgE related allergy responses to food? Maybe my response is really only because of trigger-happy mast cells?

I do not think medical science has caught up with me.

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sarahkay1111

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Re: No Mast Cell Disease Without Proliferation??
Reply #4 - 10/12/14 at 11:46:14

Hi Futurehope,

I just want to share my experience with you. I saw both of the Mast Cell Specialists at the Mayo Clinic in Rochester, and one told me I did not have MCAS, and one said I might have histamine intolerance. I did not get a diagnosis from either of them, and little help. I was told my histamine test was "normal," even though the normal histamine level was 1-3, and mine was 197. I also had elevated prostaglandins in my urine twice (after 5 tests). They did not help me.

So if they didn't help me at Mayo when I saw the actual specialist, how many regular allergists and doctors are telling people there is nothing wrong with them? I would try to find a doctor who is good to you and who believes you. It's so important.

I saw Dr. Afrin this summer and he instantly gave me the diagnosis of MCAS and said not to bother doing further testing. If your symptoms are helped by antihistamines, etc.. that is a good indicator of what you have. I was also allergy tested and the only positive was dust. I cannot eat many foods, and they tested me for 50 foods, about 40 of which I could not eat, and I had no reaction to those foods. They just trigger my mast cells if I eat them. I really feel like if some food or smell triggers the cells in my throat, that's when I feel bad. My throat is the trigger area, unless I'm very physically stressed. Maybe your stomach or intestines are your trigger area? I have a friend whose skin is her trigger area. This is just my theory, but if I can avoid throat triggers (not easily done), then I will feel better.

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Futurehope

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Re: No Mast Cell Disease Without Proliferation??
Reply #5 - 10/12/14 at 12:17:37

Hi Sarahkay1111, You're a sweetie for reading about my difficulties.

Dr. Afrin was my physician for about 2 years until he recently moved to Minnesota. The reason I am so confused and stressed is that Dr. Afrin said I have MCAS, and this doctor is not clearly telling me. She is hinting at the fact that allergies and autoimmunity may be a component of my illness?

I switched to this doctor for four good reasons. 1) she is involved with mast cell patients. I know that because she would not even take me on until after I forwarded notes from Dr. Afrin 2) I moved to Florida and she is in Florida, 3) Dr. Afrin left MUSC, 4) my GI area is majorly involved and she is a GI doctor

I actually have postural orthostatic tachycardia (meaning standing without symptoms is a challenge) as well as painful bladder syndrome.
So, Dr. Afrin felt that the difficulty in my various body systems could be best attributed to MCAS, since mast cells are in different places.

I am seriously wondering whether a trip up to Boston to see Dr. Marianna Castells is in order for me? I'm too discouraged from this last encounter to do anything right now.

Meanwhile, both my GI tract and my bladder react to foods. I can tell because it happens within minutes. I cannot avoid "eating". That would be incompatible with life. So, I do the best I can trying to avoid triggers, and trying to ingest enough calories to maintain my 138 pounds. It's a challenge. I have no choice.

Obviously the H1, H2 and leukotriene inhibiter work somewhat for me but are no longer keeping me relatively normal.

Apparently I am in the middle of the worst of the ragweed pollen season in Florida and that may have something to do with my symptoms. But I am taking allergy shots and we'll see.

I appreciate you all and the insights and encouragement. Here's to symptom free days for everyone.

« Last Edit: 10/13/14 at 02:36:36 by Futurehope »

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