Mast Cell Disorders Forum

Jennifer R.

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I am not a mushroom!
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McAlester, OK

Diagnosis?
06/14/13 at 17:21:55

So after a plethora of tests I finally have bee told that I have an abnormally high level of mast cells throughout my intestines especially my small intestine. But I totally forgot to ask exactly which form of mast cell disease I have and it's the weekend so I can't call back. I don't have any cutaneous manifestations other than flushing and tingling itching. My liver hasn't been checked but I always have liver inflammation on blood tests and I take Cromolyn(s?) eye drops for my awful eye symptoms. So is this a form of systemic Mastosytosis? I'm going to be starting gastrocrom soon and I sure hope it helps. Just wish I had remembered to ask which kind I have because I like to do research and figure out things I can do at home to help. Thanks for any info/conjecture!

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Starflower

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Re: Diagnosis?
Reply #1 - 06/15/13 at 13:53:39

Hi Jennifer,

Welcome to the group!

What is your baseline tryptase? If that's high, you might want to have a bone marrow biopsy to rule SM in or out... although it's not critical unless your tryptase is REALLY high (like in the hundreds). Unless you have mast cell leukemia or aggressive SM (which are truly rare), the exact diagnosis doesn't matter much... it's more important to get your symptoms under control through a combination of trigger avoidance and medications. It's sounds like you already have a start

BTW... an abnormally-high level of mast cells in your intestines is called "mastocytic enterocolitis."

Heather

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We're all in this thing together
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Jennifer R.

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Re: Diagnosis?
Reply #2 - 06/17/13 at 09:36:22

Well the Nurse called me back today and when I asked her she said she wasn't cetain that he was calling it anything spicific yet. She looked at the chart then and it says MCAD. So confusing because I thought MCAD was just Mast cells that where overactive, not an overabundance. So maybe my blood tests are the reason he has it as just MCAD. I know there are several variations and no two people seem to be just alike because the Mast Cells are all over the body. I had seen something about the gut version you mentioned, I'll have to look into that further I think.

An I'm not in a hurry to do a bone marrow biopsy... chicken little here ; Huh

I don't know my exact blood result levels, normally I would get all that paperwork on my next visit but this Doc is Two hours away so we did the follow up by phone. I'll have to call them and get them to fax the info to me and I'll check and see what the tryptase is.

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Jennifer R.

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I am not a mushroom!
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McAlester, OK

Re: Diagnosis?
Reply #3 - 06/17/13 at 09:49:21

Got ahold of the office and they are going to fax everything to me on Wednesday. So I'll post the results when they come in.

On another note, I was already feeling really bad today with nausea, Menstrual cramping ect. But in addition to the nausea I have bloating and heartburn now. Probubly the gastrocrom I'm thinking? It had no taste so I was thinking the side effects would be mild if any but as a friend of mine pointed out, some of the most potent poisons have no taste... (ie Iocane powder LOL)

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Jennifer R.

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Re: Diagnosis?
Reply #4 - 06/17/13 at 10:08:26

OK, I think I've figured out what my confusion was. MCAD covers ALL Mast Cell Disorders... MCAS is just the syndrom without the overabundance of mast cells. I thought the two terms were refurring to the same thing. Kind of like they used to call fibromyalgia a syndroma and not it is being classified as a disease.

So that means my Doc hasn't put a specific name to it yet. But as you said, it's more important to get the treatment started. I'm sure he will pin down the exact name as we run more tests and see how the treatment affects me. He is hopeing that after being on the gastrocrom for 6 months to a year, that I can come off it. He says some of his patients are able to resume thier normal lives without reactions. I'm not quite sure what would keep the reactions from coming back, and the Nurse said that it doesn't always work.

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Starflower

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Re: Diagnosis?
Reply #5 - 06/17/13 at 13:29:18

For the last four years my allergist has been hopeful that this is just a "phase" and I can taper off my medications Grin

My symptoms have changed over the years. At first I was going into anaphylaxis once a month, but I felt fine in between. Then I started having a lot of problems with nausea, joint pain, and heartburn. A few months later I developed depression/anxiety, dizziness, and horrible menstrual cramps (which are still there, but not quite as bad). Now my most common symptoms are petechiae and diarrhea. When I really overdo it, I feel like I have the flu for a few days. The worst thing is that once in a while my lungs crackle from airborne triggers (latex, silicone spray, etc...). When I was visiting the ER once a month for anaphylaxis back in 2009 my lungs were never involved. Go figure. In my experience, the only thing predictable about masto is that it's unpredictable Roll Eyes

Anyway... you're right about MCAD. That's the new umbrella term for any kind of disorder involving mast cells.

Heather

ps - I thought the bone marrow biopsy was not that bad. I've had dental work that was a lot worse.

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We're all in this thing together
Walkin' the line between faith and fear
This life don't last forever
When you cry I taste the salt in your tears
(Old Crow Medicine Show)

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Jennifer R.

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I am not a mushroom!
Posts: 30
McAlester, OK

Re: Diagnosis?
Reply #6 - 06/19/13 at 03:34:57

I'm seeing Dr. Minor who is a specialist in this, so I'm hoping he knows what he's talking about when it comes to withdrawing from meds. He doesn't think it's just a phase, he's just hoping that they can get some control over my immune system:) Of course they said it doesn't work for everyone and durring the time I'm on the I'm supposed to avoid all my triggers. So I'm eating mainly fruits and vegi's. Avoiding EVERY trigger is a little hard because I have so many so I have messed up once this week. I've felt kinda icky on the gastrocrom so I'm not doing much and yesterday I had SUCH a mood swing. But it seems like a lot of people have way worse symptoms.

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