Can you have MCAS without allergy symptoms?

[Prefect]

Can you have mast cell activation syndrome with head symptoms (cognitive and psychiatric problems and dizziness), mild POTS, and swollen nasal passageways as the only symptoms? ie, I never get any classic allergy symptoms like runny nose, hives, itchiness, lung issues, etc.

 

[Gingergrrl]

From my experience, it would be strange not to have any allergic reactions (to food, dyes, smells, environmental triggers, etc). Are your blood tests for mast cell disease high in the absence of allergic triggers/reactions or are you curious for some other reason?

 

[Prefect]

I haven't had any blood tests done for this condition because my understanding is it's difficult to test for (sometimes tryptase is normal, etc). Or are they straightforward test I can have my doctor do (who is already fed up with me)?

 

[Gingergrrl]

I haven't had any blood tests done for this condition because my understanding is it's difficult to test for (sometimes tryptase is normal, etc). Or are they straightforward test I can have my doctor do (who is already fed up with me)?

I have never had abnormal Tryptase and my MCAS doctor said this is more of a marker for mastocytosis which I do not have. I would recommend blood and urine for methyl-histamine and prostaglandins, combined with clinical symptoms. There is an excellent blog, website, and FB group called "Mast Attack" by Lisa Klimas which should answer your questions.

 

[ljimbo423]

Can you have mast cell activation syndrome with head symptoms (cognitive and psychiatric problems and dizziness), mild POTS, and swollen nasal passageways as the only symptoms? ie, I never get any classic allergy symptoms like runny nose, hives, itchiness, lung issues, etc.

My cfs started with cognitive, psychiatric problems and swollen nasal passageways or mild congestion, when I was still working full time. Over a few years all my symptoms got worse and I became disabled.

I had severe allergies and mild pots, until just recently. They have dramatically improved by treating dysbiosis, leaky gut and re-balancing my immune system with low dose immune modulating herbs.

I am absolutely convinced that my allergies, POTS and other symptoms are directly connected to dysbiosis and leaky gut.

All the best, Jim

 

[junkcrap50]

Yes, you absolutely can. Dr. Afin's book on MCAS describes how you can with many accounts of chronic disease symptoms that did not have allergy symptoms and were successfully treated with MCAS treatment.

I too would be interested in getting MCAS testing done, but after reading Dr. Afrin's book, testing is hard to do and has to be done in a very proper manner to get meaningful results.

 

[Prefect]

I too would be interested in getting MCAS testing done, but after reading Dr. Afrin's book, testing is hard to do and has to be done in a very proper manner to get meaningful results.

So you've applied what's in the book and have recovered?

 

[Prefect]

improved by treating dysbiosis, leaky gut and re-balancing my immune system with low dose immune modulating herbs.

So you had GI problems in addition to your other issues?

 

[ljimbo423]

So you had GI problems in addition to your other issues?

Yes I do, but you don't have to have GI symptoms to have dysbiosis and leaky gut. Functional medicine doctors that treat dysbiosis and leaky gut every day in their practices, say that GI symptoms don't tell you if you have dysbiosis and leaky gut or not.

My son has significant dysbiosis and leaky gut, and no GI symptoms, but tons of psychological symptoms, like ADHD, anxiety, mild depression, significant cognitive dysfunction (brain fog) etc. I believe all of these symptoms are caused by gut dysfunction.

Jim

 

[junkcrap50]

So you've applied what's in the book and have recovered?

Unfortunately, no. I haven't done any testing. I did start with some H1 and H2 antihistamines and oral cromolyn. But I had a bad reaction to the combo. I suspect it was either the H1 or H2. And I don't think I noticed anything from the cromolyn. But basically, what's in the book, and what Dr. Afrin does is just trial and error until a certain antihistamine and/or mast cell stabilizer works. It can take a long time and a lot of trial and error.

 

[ebethc]

My cfs started with cognitive, psychiatric problems and swollen nasal passageways or mild congestion, when I was still working full time. Over a few years all my symptoms got worse and I became disabled.

I had severe allergies and mild pots, until just recently. They have dramatically improved by treating dysbiosis, leaky gut and re-balancing my immune system with low dose immune modulating herbs.

I am absolutely convinced that my allergies, POTS and other symptoms are directly connected to dysbiosis and leaky gut.

All the best, Jim

which immune modulators did you take? I've had mixed results; not sure if it's the timing (too soon) or if I chose the wrong ones... Inosine did nothing, and mushrooms (chaga, cordyceps, reishi) were great at first, then made me worse..

 

[kangaSue]

Can you have mast cell activation syndrome with head symptoms (cognitive and psychiatric problems and dizziness), mild POTS, and swollen nasal passageways as the only symptoms? ie, I never get any classic allergy symptoms like runny nose, hives, itchiness, lung issues, etc.

Do you have GI problems too?

Mast cells are mostly produced in the gut so if you have issues causing dysmotility, then you will likely have an increase in gut stimulated mast cell activity rather than MCAS. Ketotifen or H2 acid blockers can be helpful for this.

 

[adelheid55]

@ljimbo423 I would be interested in those immune modulating herbs. Sorry if I'm derailing this thread, so perhaps it would be good to answer per PM?

 

[Prefect]

My point is, I drink 2-3 glasses of red wine and have a crapload of dark chocolate every night.

Shouldn't I feel something from that the very nights I do this? I feel the best before bedtime in fact.

I'm usually bad just before lunch (brainfog, lightheaded) the next day. Those would be some pretty damned lazy mast cell mediators.