MCAS testing suggestions please

humanrising

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my new doc thinks i have MCAS. we did some tests which all seem to be negative.

I believe someone posted either here or on another thread a link to a list of tests and a shorten treatment protocol by Afrin.

I have his book and read it so I learned a bit but its also a lot of info for my brain..... a list would be grand!

I have a follow up in a few weeks and I want to be able to ask "smart" questions and know the whats and the whys.

if anyone is aware of a short list of tests what they mean and why I would so appreciate it!!!!
 

Learner1

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You might find these helpful, understanding many of us do NOT have elevated tryptase, so we use the other criteria:

"Tests - TMS - The Mast Cell Disease Society, Inc :TMS – The Mast Cell Disease Society, Inc" https://tmsforacure.org/tests/

"Diagnosis - Mast Attack" https://www.mastattack.org/diagnosis/

"Recent advances in our understanding of mast cell activation – or should it be mast cell mediator disorders?" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7003574/

This last paper is perhaps most important for patients here - two of my ME/CFS doctors are co-authors and it does a good job of describing the difficulties and controversies about diagnosing patients. Well worth reading:

"Diagnosis of mast cell activation syndrome: a global “consensus-2” in: Diagnosis - Ahead of print" https://www.degruyter.com/view/jour...dx-2020-0005/article-10.1515-dx-2020-0005.xml
 
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humanrising

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You might find these helpful, understanding many of us do NOT have elevated tryptase, so we use the other criteria:

"Tests - TMS - The Mast Cell Disease Society, Inc :TMS – The Mast Cell Disease Society, Inc" https://tmsforacure.org/tests/

"Diagnosis - Mast Attack" https://www.mastattack.org/diagnosis/

"Recent advances in our understanding of mast cell activation – or should it be mast cell mediator disorders?" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7003574/

This last paper is perhaps most important for patients here - two of my ME/CFS doctors are co-authors and it does s hood job of describing the difficulties and controversies about diagnosing patients. Well worth reading:

"Diagnosis of mast cell activation syndrome: a global “consensus-2” in: Diagnosis - Ahead of print" https://www.degruyter.com/view/jour...dx-2020-0005/article-10.1515-dx-2020-0005.xml
I will start from the last and work my way up! thank you so much!
 

Learner1

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See table 2. I found this paper to be a very concise summary of his book.

"Mast cell activation disease: a concise practical guide for diagnostic workup and therapeutic options"
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069946/
That is for MCAD, not MCAS. Too many MCAS patients with significant and debilitating symptoms get missed when they are held to the criteria for this diagnosis, and then don't get the treatment they need, unfortunately.
 

MCASMike

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To me the "easy test" is to take loratidine, aspirin, vitamin D3, and Luteolin supplement and see if your symptoms improve significantly. I think this works quite well if you are like me and have a whole bunch of symptoms consistent with MCAS. From what I understand the testing is highly problematic, assuming you can find a lab that knows how to do these tests! Famotidine might be good for GI issues but I had low stomach acid issues and no major GI problems now, so I have only taken one famotidine in the last few months.
 

Learner1

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To me the "easy test" is to take loratidine, aspirin, vitamin D3, and Luteolin supplement and see if your symptoms improve significantly
That's an odd bunch of things to try. Vitamin D is great stuff but it hasn't done much for my MCAS aspirin us loaded with cornstarch which is a major allergen.

Most patients I know would try an H1 and H2 antihistamines, and quercetin, which are easy to get, but they may need more from this list or the attached.

"Medications to Treat Mast Cell Diseases - TMS - The Mast Cell Disease Society, Inc :TMS – The Mast Cell Disease Society, Inc" https://tmsforacure.org/treatments-2/medications-treat-mast-cell-diseases/
 

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MCASMike

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Learner1, that's what I read in Afrin's book and on some sites, so while it may look odd, I wasn't the one who came up with it! Here is something you might want to read about D3:

https://www.mastattack.org/2016/06/effect-of-vitamin-d-on-mast-cells/#:~:text=Vitamin D3 can also induce,inflammation resulting from IgE activation.

Loratidine is a second gen H1. Cornstarch may indeed cause you problems but with MCAS, nearly anything can be a trigger and it's all individual. For me, without major gut issues, I try to eat a lot of different food items, though I avoid meat of all kinds for ethical reasons (I do consume some gelatin in some of the supplements I take, though). It's quite obvious when there's an issue. For instance, an all natural lemon "Italian Ices" dessert makes my nose run profusely, like nothing else I eat, so I try to avoid citrus and citric acid as much as is reasonably possible.

The first thing I took was some Antivert I had from a few years earlier, and within 24 hours my "head fog" was gone, but most of the other symptoms remained (I think the sensitivity to heat was relieved quickly too, and I slept more soundly). I switched over to loratidine within about a week and also started taking about 600 mg of aspirin throughout the course of a day. I then came upon Luteolin,, and purchased Mexican oregano and then celery seed (I make a tea with those and other things like marjoram, green tea, black cherry concentrate, etc.). After a week or so of that, I started to see some major relief, including: breathlessness upon minor exertion, leg weakness/pain, sleep apnea type issues, swallowing issues, all kinds of rash problems, blood pressure drop upon standing or walking up steps, etc. The only thing that didn't get relief were my eye issues, but Zaditor works great (it has ketotifen in it); it seems that when I read too much the eyes get irritated and I need to use those drops. I will be taking another DEXA exam some time next year, so that's when I'll see where my osteoporosis is at.

I should also mention that I have other medical conditions apparently not related to MCAS, so I can't play sports any longer or do anything too strenuous, but even standing up for too long leads to a recurrence of the leg weakness/pain, for example. When I was younger, this kind of thing would occur after I did too much physically, and it would take days or even about a week to go away. Now the weakness/pain can be gone within a few hours, just so long as I keep to the treatment protocol and rest. My point here is that it's certainly not clear to me that people with this condition can do too much with their bodies. Taking a short walk around the block may be too much, and I think a lot of people are seeking a 100% cure, which may not be realistic. I try to do just a little walking each day to prevent deconditioning, but I don't think more is possible. I may be able to take more of this or that, but I don't want to take the risk, because my other conditions prevent me from doing things like a lot of walking anyway. If anyone else can speak to this, I'd be curious to hear about your experiences!
 
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That is for MCAD, not MCAS. Too many MCAS patients with significant and debilitating symptoms get missed when they are held to the criteria for this diagnosis, and then don't get the treatment they need, unfortunately.
You're right. Thanks. I shared the wrong paper. There is a short paper by Afrin on MCAS that is a summary of his book, but I don't have it on hand.