2 schools of thought you will encounter with Mast Cell Activation Syndrome (MCAS)

[Hip]

It is important for so many reasons including getting the proper information for your individual case:

I can appreciate those reasons, but my understanding it that it's very difficult for even the best physicians to be sure about MCAS diagnosis. I think I read somewhere that it takes 5 or 10 years on average for a patient to arrive at an MCAS diagnosis, just because MCAS mimics many other things, so doctors often think about all sorts of other diseases before they consider MCAS.

 

[lafarfelue]

Here is a good infographic for MCAS testing

(I can't even get some of these tests in Australia, as far as I'm aware! )

I choose doctors now based on their knowledge (or openness to learn) about MCAS.

this may seem like a silly question, but how do you personally screen for whether they're genuinely open to learning (if they already don't know)?

I'm looking for a Dr who'll help me with MCAS but am worried about choosing someone who says one thing over the phone or via email, but does something else. Is there a language or specific tone that you watch for, outside of (for eg) 'yes, I will help you with MCAS testing'?

Based on medical research reading and interactions with patient-researchers, I think MCAS caused or contributed to my mother's severe pernicious anemia and am concerned that if I have it, I may develop (further) immune illnesses too. Or CCI etc.

I'm sort of hoping that treating possible 'slow leak' MCAS may help me with ME/CFS. It might be the cause of this weird life-long fatigue and 'weak' health that I've always had.

I should really start a separate thread for this! Sorry if this is hijacking!

 

[Inara]

Following some diagnostic criteria may also be useful. Proposed diagnostic criteria for MCAS are detailed here.

To my knowledge, there are several diagnostic criteria, mirrorring the "two camps". The criteria by Molderings et al, for instance, mention elevated tryptase as optional. The set of criteria you linked require elevated tryptase during a symptomatic episode, and the difficulties of that were discussed above.

 

[Gingergrrl]

I should really start a separate thread for this! Sorry if this is hijacking!

Hi @lafarfelue I think everything that you are asking is relevant to the topic of MCAS testing (and working with doctors who are MCAS literate or willing to learn about it if they are not). I am also happy to chat via PM (but have to warn you that I am sometimes slow to reply)!

We apologize @Blake2e if this is going off-track and please let us know! Also, how have you been doing lately, Blake, since you last updated your Rituximab thread?

(I can't even get some of these tests in Australia, as far as I'm aware! )

Is there a doctor, or clinic, in Australia that is considered to be an expert or specialist in MCAS? I actually do not know the answer (re: Australia) and back when I was desperately trying to find an MCAS specialist in 2015, I was only looking within the US and the specialists were few and far between. They are often allergists/ immunologists who have decided to specialize in MCAS like my doctor. He is about an hour from me and I was incredibly lucky to find him when he was still taking new patients back in 2015.

this may seem like a silly question, but how do you personally screen for whether they're genuinely open to learning (if they already don't know)?

It's not a silly question at ALL and I have several ways of doing this. When I need a referral to a specialist, I always start by asking my MCAS doctor b/c the hospital that he works for (where I see him) is now very familiar with MCAS b/c of him. So when I did my infusions, there was no question in my mind that I would only do them at the infusion center at his hospital b/c the nurses are trained in MCAS.

He referred me to the GI doctor who will be doing my colonoscopy in Aug and she sees many of his patients. She knew immediately that mine would have to be done in the hospital operating room (vs. an outpatient clinic) b/c I am higher risk and she chose an anesthesiologist who was also familiar/ comfortable working with MCAS patients. So in this case, I was very, very lucky.

In other situations, I've asked him for a referral (like to an MCAS literate dentist) but sadly he did not have one. In those cases, my next step is to ask in one of the private Masto Groups on FB who often have referrals (and is actually how I found my MCAS specialist). When none of that works, I do Google searches and try to find one on my own.

When my dentist retired, the dentist who took over his practice refused to work with me b/c he was scared I was an anaphylaxis risk and basically "fired me" as a patient (I guess he was worried about being sued). I saw two more dentists who were unable/ unwilling to grasp MCAS (or why I needed to know the ingredients in the materials that they used to fill cavities-- all the materials from the composite to the etchant, primer & adhesive) and I could tell that they either thought I was being difficult or I had some kind of delusion (vs. that I'd had anaphylaxis to certain dyes).

I finally found a holistic dentist who was very open to working with MCAS patients and other obscure medical issues. Without getting too off-track, it was not the right timing for me to proceed but when I am ready, she is the most viable option. She is going to run a blood panel to see which products are safest for me and then I can give them to my MCAS specialist so I can test each one as a skin patch for 48 hours (before drilling them into my mouth and THEN finding out I am allergic and having to get them removed )... or even worse, having them re-trigger my allergic reactions to food and my other autoimmune disorders which are in remission.

I'm looking for a Dr who'll help me with MCAS but am worried about choosing someone who says one thing over the phone or via email, but does something else. Is there a language or specific tone that you watch for, outside of (for eg) 'yes, I will help you with MCAS testing'?

I can tell by their reaction if I show them the emergency protocols packet from the Mastocytosis Society. I did this once with an ENT and she had never heard of MCAS but she reviewed the packet and it helped her make clinical decisions in my case and she even asked me if she could xerox it. If the potential doctor reads through my personal packet, my allergy list, etc, and discusses it with me in an open-minded way then I can tell that they take it seriously.

My dermatologist (who knew me for many years before I even got sick) is very smart and I was very lucky that she was knowledgeable about MCAS and autoimmunity. She 100% understood why I was doing IVIG and Rituximab (and understood the mechanisms for autoimmunity). She asked me questions like, "Which mast cell stabilizer are you taking?" and "What dose of IVIG are you doing?" and it was obvious to me that she understood. For an upcoming (potential) procedure she said she will talk to the surgeon re: which local anesthesias are safe for me.

But on the flip side, if a doctor (or dentist) speaks to me like I am insane, or is too afraid of potential anaphylaxis even though I have not had any since 2016, it is usually clear pretty quickly that it is not going to work for me!

Based on medical research reading and interactions with patient-researchers, I think MCAS caused or contributed to my mother's severe pernicious anemia and am concerned that if I have it, I may develop (further) immune illnesses too. Or CCI etc.

Have you been tested for pernicious anemia? I was having low-grade anemia for a long time and my main doctor decided to test me for it and it was negative. I had so many other autoantibodies that we almost expected it to be positive but it wasn't and I was able to normalize my levels by taking daily iron. I take several supplements b/c I am not able to maintain normal levels (of all kinds of things) without them and we think this is due to malabsorption from MCAS (since histamine makes the membranes more permeable).

For example, I have to take a very high dose of Vit D each day (10,000 IU's) just to barely maintain at the bottom of the "normal" range. I also take Hydroxo-B12 & Folinic Acid or my B-12 dips into very low numbers and same with Potassium (I take a prescription Klor-Con) and now the iron.

I'm sort of hoping that treating possible 'slow leak' MCAS may help me with ME/CFS. It might be the cause of this weird life-long fatigue and 'weak' health that I've always had.

Have you ever had anaphylaxis or an immediate severe allergic reaction to food, or a dye, or a medication, etc, or is it always more of a slow leak for you?

I hope I did not write too much ... also it was a slow process for me to find my current doctors and I could write a book on the series of nightmare doctors that I saw in past years

 

[lafarfelue]

Thanks for responding, @Gingergrrl! I needed to pace myself in responding back. Please do not apologise about delayed response, it really is par for the course with us all, I think

Is there a doctor, or clinic, in Australia that is considered to be an expert or specialist in MCAS?

MCAS isn't even recognised in Australia as an actual medical disease (AFAIK). I'm in the process of tracking down 'the best bet' in terms of an allergist or someone who'd be willing to explore MCAS. (It'll take me a long time for me, on top of fulltime work and just general ME/CFS life)

When I need a referral to a specialist, I always start by asking my MCAS doctor

Can you ask your doctor to find me an MCAS person here in Australia? (Although.. if they do have any suggestions of MDs they've heard of in their/a similar field, I'd be all ears!)

In other situations, I've asked him for a referral (like to an MCAS literate dentist) but sadly he did not have one. In those cases, my next step is to ask in one of the private Masto Groups on FB who often have referrals

Looks I might need to rejoin FB. I'm really against FB for multiple reasons (including ethical and personal health reasons). I already have trouble keeping up with this forum and chronic illness/disability Twitter sometimes. But I haven't found anyone via the forums here, and I've gathered a couple of suggestions via Twitter... but I really do need to exhaust as many options as possible.

I can tell by their reaction if I show them the emergency protocols packet from the Mastocytosis Society.

I kind of need to decide as best I'm able before meeting with them. I'm already counting on some hit-and-miss though.
I'm pretty sure that unless I somehow find someone who is, or tests that are, acceptable to Australia's universal healthcare system, I'll be paying privately. With working fulltime and insurance not working the same way here in Australia as it does in the USA, I need to preserve my energy and money as best I can. Hoping I can email the infographic I posted somewhere else here and see what their reactions will be, and decide better that way. Again, I'm not even sure some of the testing is available in Australia.

Have you been tested for pernicious anemia?

I have been and I show none of the markers or signs of it. But lucky me, I got ME/CFS instead, it seems haha! ah deary me. I'm fine, with just increased Vit D supplementation, thankfully.

Have you ever had anaphylaxis or an immediate severe allergic reaction to food, or a dye, or a medication, etc, or is it always more of a slow leak for you?

When I was younger I had what seemed fairly typical childhood reactions to penicillin and carrots. Initial allergy to cats and rabbits, which would eventually fade if I was around them for longer. Unsure what else. But otherwise, no not really. I've had post-nasal drip and 'reactive lungs' (read early morning and/or very cold weather cough to eliminate fluid build up) for as long as I can remember. Thought the post-nasal drip may be CSF leak, but after the OTC med 'self-test' where it disappeared completely, it seems not!

As my mum got older (around the age that I am now!), she started exhibiting increasing allergic symptoms and general health issues... environmental allergies, hyperPOTS, a jaw abscess, dermatographism, severe reaction to codeine (though unsure of course if that's the codeine itself or anything else in the med), severe intestinal issues (went on a low histamine and salicylate diet for years), malabsorption, acid reflux, losing all the cartilage in her knees for absolutely no discernible reason... just a laundry list of things that are seemingly unconnected. Unless mast cell disease is included in the equation.

She's being treated for arthritis now too, but I do wonder if she was treated for MCAS, if that would dissipate. We're both bendy and have had similar spinal, neck and joint issues (and it feels like my knees are getting crunchier and crunchier the past couple of years).

I seem to have responded well to the 'self-test' with OTC medications and supplements, though I couldn't really commit to the necessary accompanying diet because food prep is really difficult. However, my and my Mum's medical histories and the way my body responded to and rebounded from that self-test is enough for me to be sure I have something serious enough to warrant full examination.

I'm glad that MCAS specifically is receiving further attention and research. More people need to understand how profoundly and broadly it can affect our systems, even if only at a 'slow leak' level.

Some of this post is relevant to getting people thinking about mast cells and how so many disparate things can all be connected, but I will copy all of this post across to a new thread to discuss my own situation more thoroughly without further disrupting this thread. Will ping you, @Gingergrrl, once I have done so!

*edited to say* I will also post a link to my own thread here, in case anyone feels anything may be relevant to their own situation/health, or is simply just interested in my own MCAS search

 

[Gingergrrl]

Some of this post is relevant to getting people thinking about mast cells and how so many disparate things can all be connected, but I will copy all of this post across to a new thread to discuss my own situation more thoroughly without further disrupting this thread. Will ping you, @Gingergrrl, once I have done so!

Thanks for tagging me into your new thread @lafarfelue and I am going to reply to it later today when I have time to read it all more carefully

 

[Blake2e]

I'll have to check back on this thread later to reply to questions/comments (getting pretty late for me right now and got work in the morning).

Side note: dont worry about hijacking this thread, my main point in writing this post was to stimulate conversation.

 

[Blake2e]

Thank you for your opinion. Actually the MCAS doc, who is now speculating about the "pseudo-antibodies", is one of the experts of the first category ( I do not want to disclose names here in public, but one can pm me for that) and that is why I am literally in hell right now, b/c every doctor thinks, he as the world renowned expert must know these things and must be right... He also influences quite a few MCAS doctors with this theory. I went to really great lengths and expenses to see this person and it caused me to crash for weeks. I got Dx'ed with MCAS, but he dismissed my other diagnoses and now I have problems to make my other doctors believe me: I really am able to distinguish between my mast cells acting up or my rheumatologic disorder acting up (which he denies too - now everything is MCAS.) The second doctor I see in my country who treats my MCAS symptoms is an ENT, who specializes in AERD (not a mast cell specialist per se). I do not have any allergies, but I have severe NSAID intolerance and salicylate sensitivity, which literally makes it sometimes impossible to eat and I did not believe it myself at first, but a lotion with salicylates might be enough to almost send me into anaphylaxis and it did after a huge surgery, when I was triggered enough. (It actually stunned the doctors in the hospital and they did not include this episode in the medical report - why bother with something that nobody has seen so far and give prove that they misjudged the situation pretty badly until I got full blown facial, nose+throat swelling and hypotension?) That is why my ENT has decided to treat me with Omalizumab. I just started (about three weeks ago with a low dose, not that much of a change - very subtle if any). @Blake2e How long did it take to see the effects? My ENT just wants to try it for two to three months max...

Hmm, I would go full force 1st getting MCAS under control. That must be handled before you can hope to treat any other condition. After its under control, your remaining symptoms should be more than adequate to prove to anyone who think its all just MCAS,

Get that clinical note from the hospital regarding your severe allergic reaction to salicylates, then after MCAS is handled test that allergy as proof to docs your MCAS is controlled so it cannot be the cause of your other symptoms.

Omalizumab helped me almost immediately when I 1st started. It was subtle but still very apparent to me and very slowly made me improve until around the 6 month mark of using it when it stopped working. Rituxan and steroids is what I use now to make sure it continues to work for me, this is usually successful but sometimes doesnt work. If omalizumab/xolair works for me these days is highly dependent on how recent my last Rituxan was (1st 2 months after Rituxan, it is good but after that xolair stops working for me.)

I would try to get as much of omalizumab as you can. I dont see a good reason to start small, even if you react strongly to it.

Regarding the high plasma histamine - I have an HMNT mutation, that means my body is not able to clear histamine as fast as "normal people" do - about two times slower and I took HCQ (plaquenil) at the time and although I felt it helped tons with my rheumatologic disease it made my allergic symptoms much worse (HCQ blocks the HMNT enzyme even further). And now I am kind of stuck because nobody puts the pieces together. Rheumatology wants me on the HCQ, but it makes my MCAS worse. The mast cells doctor thinks we should just treat the MCAS and everything will fall into place (b/c my antibodies are pseudo and even if it is really an autoimmune disease, it would be mast cell driven - so just treat the mast cells anyway and forget about the rest).

HCQ actually was amazing for my MCAS when I first took it. For me it takes about 3 or so days before I clearly notice it's effect. But these days its useless for me as it needs time to build up in your system before it works and that wont work on me as my mast cells somehow make me resistant to drugs and prevent me from even metabolizing them.

HCQ has been used to successfully treat allergic diseases. If your histamine excess is caused by mast cell degranulation then theres a good chance that it could help. Histamine metablosim issues is also a problem, but I would think if mast cells are better controlled then your HNMT enzymes could take a hit and your histamine levels should still be at a better level. A but unexpected that it didnt help your MCAS, but how each case of MCAS operates seems to carry some bit of uniqueness.

I'm having a bit of trouble fully understanding your full clinical picture. Do you have a post that summarizes all your symptoms and what youre experiencing? I'm particular interested in the severity of your MCAS, as well as everything else. If you havent you should write out a summary of your medical situation, like I did in my log thread. Symptoms, diagnostic test results. Meds youve tried and what they helped.

As it took me years after my original CFS diagnosis to obtain a rheumatologic diagnosis (the only time I actually developed kidney troubles and I really do not want to take my chances to develop these kinds of problems again...) I am quite horrified that this happened to me, when I just wanted to change my situation for the better in obtaining the MCAS diagnosis, which was at first denied, because my rheumatologic disease could also activates mast cells (WTF!!! And now everything has changed to the opposite.)

Oh man, I can totally relate to your frustration. And it pissing me off a little just reading this. I would try pursuing treatment for MCAS and follow through with the Rheuma who originally diagnosed you with lupus and try to strategize in a detached manner how to go about convincing them to do what you want. Think of what they would need to see to justify providing treatment/

@Blake2e We seem to be alike in that regard: My POTS seems to be mostly acting up when my mast cells flare. I also get severe hypotension when my mast cells are acting up - almost to the point that I lose consciousness.

Interesting, I'm only hypotensive when my MCAS is being what I consider to be mild and I nap multiple times a day for easily 3+ hours if I dont use all my will power to get up and pop stimulants/nootropics --I guess that is also losing consciousness but I've never actually fainted. When its my MCAS is more moderate my POTS starts up and my BP starts to approach 120/80 with a crazy high heart rate. Then when severe, my diastolic jumps and stays at over 120 and systolic typically stays b/w 120 and 160 at this MCAS severity and heart rate even more jacked up.

@Blake2e @Gingergrrl I had a long conversation with a hematologist last week about Rituxan treatment and he told me my rheumatologic condition is not bad enough to try it and as it does not target mast cells (the MCAS expert made sure to include his disapproval of Rituxan in his statement) it would not help me anyway. I mean, of course, what happened to Whitney or Olaf Bodden is a warning, you cannot "uninject" Rituxan... I am on Imuran now to control my rheumatologic disease, which is where I come from, considered less toxic and dangerous than Rituxan - of course one can stop it at anytime, but it actually causes cancer and is cytotoxic and in the first months I had a hard time with AZA (Imuran) induced leucopenia. So it is not a friggin' gummy bear either.... They use it sometimes off-label here for severe MCAS and allergies, too (as wells cyclosporine) - but it did not help me with that, sadly. Now as my rheumatologic disease is in remission the doctors are thinking we could basically put me on yet another higher dose of antihistamines and use the HCQ again (if Xolair/Omalizumab helps - to avoid the long-term side effects from the Imuran), which is imho in combination with the HMNT mutation what brought me to the place I am now. Sorry for repeating myself here, but as long as my AI disease is not flaring I have a hard time finding a new rheumatologist to treat me, because they think my disease is controlled now (and maybe it was MCAS all along...). I have a CTD, which is often not that easy to diagnose either - like MCAS.

Rituxan is definitely less toxic and, in my view less risky, than Azathioprine. If your rheuma disease are in remission right now then I would do what your other docs suggested. Focus on controlling your MCAS. Incessant MC activation aggravates every aspect of the body, so there is a strong possibility that it can worsen other conditions. And if your rheuma disease are in remission then why are seeking more treatment for it? Im a bit confused with what youre actually trying to do.

CTD (cumulative trauma disorder, right?) could be tough, especially if its the result of long term illness. I'd really recommend trying to keep yourself as psychologically distant from your health as much as possible. Approach it with the same sense of detachment like you would with any other puzzle or game. Being emotionally detached and approaching this in a cold calculating way is what I credit to be my best weapon with dealing with all this health stuff. People are often shocked to find I have no signs of depression or downer feelings regarding my health despite it being as crippling as it used to be and often still is. And when I do they are always very short-lived. Conquering the mental aspect of illness can be initially tough, but once you learn how to, it becomes pretty easy to come out unfazed in the face of tragedy. I was "suicidal" but with very little of the usual associated feelings, mine was a pure logical conclusion. If after I've tried everything and nothing worked then I would simply "quit" this unbeatable game rather then let it forcefully make me quit this game of life. (In the short term, if my MCAS kills me itll be through starvation, sleep deprivation or heart failure. In the long term probably circulatory collapse or degeneration of all my nerves).

You got the right mindset of persistence. Maybe I'm just misunderstanding, but I only get a muddled sense of what youre actually trying to accomplish and what your current problems actually are. And I saw your other post about you having undergone surgery, what was that for?

So anyways - thanks for reading and for the input of course, I know this is quite complex - especially @Blake2e and @Gingergrrl. I also want to say, although it my sound a bit like a rant, I really do expect none of my doctors to work magic on me and I know it takes persistence and patience to get anywhere, but after years of fighting, after sometimes being dismissed and after meeting doctors who actually tell me my history is too long, I have too many diagnoses, and my case is too complex to treat (I actually get that, but I cannot change it, it is not something I wished for) I am just tired and sometimes frustrated. No one really tries to put the pieces together it seems and nobody really wants to take a risk in treating me - so they just send me on my way...

I wish everybody a nice Sunday!

No problem. I'm glad if I could be useful. I like figuring out complex problems, I actually find it kinda fun. A bit like solving brain teasers and I like bragging about accomplishing things so-called "professionals," in any field, can't.


Edit: I think CTD as in connective tissue disorder is actually what youre referring to. If so what info do you have about the type you have? Ehlers danlos, some type of connective tissue autoimmune, or is it actual lupus?

 

[Blake2e]

A few comments here:

1. Dr. Theoharides has stated tryptasecis not a reliable marker for MCAS. He encouraged measure of other metabolites.
2. I saw an allergy immunologist who belongs to the tryptase camp, and quickly decided he was useless... Better to move on, I think, if the doctor's not willing to learn and isn't goung to help.
3. The doctor who diagnosed me did chromagranin A and plasma PGD2 through Quest who sent it to Interscience. Both were quite high while my histamine and tryptase are always low.
4. My doctor thinks my MCAS is autoimmune, as just one more autoimmune disease - I have 3 other autoimmune problems, including POTS.

I have a question though. How do you know if Rituximab is helping MCAS? My MCAS symptoms are generally more subtle, except if I'm in the middle of a reaction to a random something and then I get hives, dizziness, chest tightness, nausea, intestinal symptoms, etc.

I know Rituxan is helping my MCAS b/c my MCAS is about as subtle as being hit over the head with a brick. My whole body starts to deteriorate and freak out. Diarrhea multiple times a day unless I just stop eating, intense nausea (rarely actually vomiting), severe tachycardia (non-stop POTS, and feeling like I'm getting high dose distilled norepinephrine directly IV-ed into me all day and night), profuse putrid sweating out every and all pores in my body, zero appetite, losing sensation and motor control in hands and feet -- all this all the time as I'm literally allergic to almost every ridiculous thing you can imagine, and more acute exposures further intensify all this and cause impending feeling of doom.

So for me it is easy to tell if a drug like Rituxan is working. No other drug has worked for me for as long as Rituxan has.

 

[Blake2e]

There's a new paper out belonging to the "tryptase camp" it seems:
https://www.ncbi.nlm.nih.gov/pubmed/31256161
Open Access.

Based on all I've read I agree that tryptase is the gold standard of MCAS diagnosis. Out of every diagnostic test I've seen studies on for MCAS, tryptase definitely does seem like the best one, and I think this article is simply just reviewing that. Clicking and skimming (the whole study not just abstract) through their own listed sources (most of which I've already thoroughly combed through in the past) confirms the validity of trypase as the gold standard but they all note exceptions which the article doesnt even waste a breath on. Black and white, simplistic take. The article doesnt even touch piecemeal degranualation, mast cells dont just pop and always release all their junk. Mast cells are heterogeneous in phenotype and function. What comes out is dependent on a varying factors, a major one being microenvironemnt, essentially which of its receptors is gets stimulated.

I actually mentioned this concept of piecemeal degranulation to one of the allergists I described earlier in this post as type 2, and his response was essentially an incredulous "Wut bruh?" Btw he was an elderly man likely in his late 60s. Telling me he personally knew the guy who first coined that term and accused me of using buzzwords. I didnt say anything in response and just waited for him to at least give a basic explanation why what makes good sense to me is wrong. He noticed me waiting for it and all he could retort with was ethos and pathos of the type I wrote about earlier in this thread. The guy even acknowledged me as "highly intelligent" b/c of my career choice and used it as part of his best argument which was in essence "youre a smart guy why dont you believe me when I say you dont have MCAS??" You could flatter me all you want, and while my already bloated ego enjoys it, objectivity and truth is all I truly care about as thats what holds actual tangible value in this world.

Strangely enough I often read studies about how great tryptase is as a diagnostic tool is and while I do agree with that, however most cases I read on online (I'm only counting the ones that explained their MCAS sufficiently and how they were diagnosed) and cases I've learned of in meat-space about others evaluated/diagnosed/treated for MCAS, I noticed most dont have elevated tryptase levels. A little interesting, not sure what it exactly means globally but reliable anecdotes do hold a power of their own and can trump studies.



***

Why all this fuss about the difficulty doctors have in MCAS diagnosis, which is one of the hardest conditions to accurately diagnose?

There are some more subtle cases that are indeed difficult to diagnose. But I disagree with it being one of the hardest conditions to diagnose. If youre in the know it isnt that hard. After hearing me say I suspect a mast cell disorder, my main Allergist knew right away I had it when he looked at me in out first appt and my allergy symptoms arent so typical. And with just some simple tests he performed during that appt he confirmed it. And we just did lab testing to get a proper diagnosing and for insurance purposes. MCAS is actually pretty common, though extreme cases like mine are pretty rare from what I gather.



***

this may seem like a silly question, but how do you personally screen for whether they're genuinely open to learning (if they already don't know)?

I'm looking for a Dr who'll help me with MCAS but am worried about choosing someone who says one thing over the phone or via email, but does something else. Is there a language or specific tone that you watch for, outside of (for eg) 'yes, I will help you with MCAS testing'?

How do you screen docs? Simple practice evaluating people's level of intelligence and personality. One thing I look for is genuine nerdy passion. When you go into the biochem and pathophysio do they jump right in with you with a nerdy excitement? That's what you want. Theres a whole science to evaluating a person and I could probably write a few volumes on it, but the above is the crux of it for what you want.



***

When my dentist retired, the dentist who took over his practice refused to work with me b/c he was scared I was an anaphylaxis risk and basically "fired me" as a patient (I guess he was worried about being sued). I saw two more dentists who were unable/ unwilling to grasp MCAS (or why I needed to know the ingredients in the materials that they used to fill cavities-- all the materials from the composite to the etchant, primer & adhesive) and I could tell that they either thought I was being difficult or I had some kind of delusion (vs. that I'd had anaphylaxis to certain dyes).

I finally found a holistic dentist who was very open to working with MCAS patients and other obscure medical issues. Without getting too off-track, it was not the right timing for me to proceed but when I am ready, she is the most viable option. She is going to run a blood panel to see which products are safest for me and then I can give them to my MCAS specialist so I can test each one as a skin patch for 48 hours (before drilling them into my mouth and THEN finding out I am allergic and having to get them removed )... or even worse, having them re-trigger my allergic reactions to food and my other autoimmune disorders which are in remission.


I can tell by their reaction if I show them the emergency protocols packet from the Mastocytosis Society. I did this once with an ENT and she had never heard of MCAS but she reviewed the packet and it helped her make clinical decisions in my case and she even asked me if she could xerox it. If the potential doctor reads through my personal packet, my allergy list, etc, and discusses it with me in an open-minded way then I can tell that they take it seriously.

My dermatologist (who knew me for many years before I even got sick) is very smart and I was very lucky that she was knowledgeable about MCAS and autoimmunity. She 100% understood why I was doing IVIG and Rituximab (and understood the mechanisms for autoimmunity). She asked me questions like, "Which mast cell stabilizer are you taking?" and "What dose of IVIG are you doing?" and it was obvious to me that she understood. For an upcoming (potential) procedure she said she will talk to the surgeon re: which local anesthesias are safe for me.

Very interesting. Ive been putting off going to the dentist (but still taking great care of teeth despite allergy to a toothpastes and all other oral hygiene products) as I'm a little concerned with having something placed in my mouth and having that be another allergen that is constantly triggering me.

 

[LiLaLu]

Omalizumab helped me almost immediately when I 1st started. It was subtle but still very apparent to me and very slowly made me improve until around the 6 month mark of using it when it stopped working. Rituxan and steroids is what I use now to make sure it continues to work for me, this is usually successful but sometimes doesnt work. If omalizumab/xolair works for me these days is highly dependent on how recent my last Rituxan was (1st 2 months after Rituxan, it is good but after that xolair stops working for me.)

That is good news - I am happy that the combination is working. There are some mast cell specialists (like Prof A), who are of the opinion RTX has no place in treating MCAS. The only place where according to his opinion would make sense is, if one has *consistently* elevated anti-IgE oder anti-FcEpsilonRI Antibodies. So even if you are positive one time - it does not mean it is autoimmune in his opinion. But I think RTX has a place in difficult cases with a severely deranged immune systems.

HCQ has been used to successfully treat allergic diseases. If your histamine excess is caused by mast cell degranulation then theres a good chance that it could help. Histamine metablosim issues is also a problem, but I would think if mast cells are better controlled then your HNMT enzymes could take a hit and your histamine levels should still be at a better level. A but unexpected that it didnt help your MCAS, but how each case of MCAS operates seems to carry some bit of uniqueness.

It seems that in persons with AERD/salicylate sensitivity and MCAS there are often genetic abnormalities regarding histamine metabolism, which make the treatment a bit more difficult - at least that is what my GI specialist is saying and he has a lot of experience with persons with salicylate intolerance (which he think is a phenotype of a certain MCAS form.) I can even react to salicylates in soaps with severe facial swelling, so I am one of his most severe cases.

Oh man, I can totally relate to your frustration. And it pissing me off a little just reading this. I would try pursuing treatment for MCAS and follow through with the Rheuma who originally diagnosed you with lupus and try to strategize in a detached manner how to go about convincing them to do what you want. Think of what they would need to see to justify providing treatment/

My rheumatologist is a nice guy, but he does not want to treat off-label - he wanted me at a university hospital so that they could pursue different approaches, but I got sent back to him with the recommendation to just use the guidelines for treatment (and to leave the MCAS and my other immunologic problems to other specialists). Which I find kind of obscure, if your whole immune system gets nuts - you have to look at the full picture, you cannot treat just lupus or just MCAS - it is not working imho. But I mean, I am lucky - after a hard fight I actually got diagnosed after several years, although I had symptoms and strange labs indicating a problem years beforehand when I got diagnosed with CFS because noone knew really what was going on. If I hadn't pursued the diagnosis and had seen specialists - I still would not have a correct diagnosis I think... and then you get diagnosed with some form of psychosomatism in the end.

Interesting, I'm only hypotensive when my MCAS is being what I consider to be mild and I nap multiple times a day for easily 3+ hours if I dont use all my will power to get up and pop stimulants/nootropics --I guess that is also losing consciousness but I've never actually fainted. When its my MCAS is more moderate my POTS starts up and my BP starts to approach 120/80 with a crazy high heart rate. Then when severe, my diastolic jumps and stays at over 120 and systolic typically stays b/w 120 and 160 at this MCAS severity and heart rate even more jacked up.

That sounds very annoying. I am sorry - I hope you are better now. It my MCAS takes a turn for the worse I do get tachycardia (160-180 bpm) and I get severe hypotension and I can faint if it is bad enough. Also I start sweating severely and I can generate so much heat, that my glasses steam. (Looks quite funny, does not feel funny). Do you suffer from frequent anaphylaxis? Some doctors here are only diagnosing MCAS if you have full blown anaphylaxis...

Rituxan is definitely less toxic and, in my view less risky, than Azathioprine. If your rheuma disease are in remission right now then I would do what your other docs suggested. Focus on controlling your MCAS. Incessant MC activation aggravates every aspect of the body, so there is a strong possibility that it can worsen other conditions. And if your rheuma disease are in remission then why are seeking more treatment for it? Im a bit confused with what youre actually trying to do.

I have written you a PM - as I said - I am not comfortable sharing everything here in the open part of the forum. But I am admiring your logs and the work you are sharing. I am sure, they help many people - they certainly helped me, so thank you...(I hope this is okay, is somebody has any specific questions - please feel free to ask/PM me.)

My CTD (connective tissue disease) is not completely in remission, although better than before AZA treatment - I still get flares way too often and I do not like taking AZA, when maybe another medication could also help my MCAS and help maintain a prolonged remission with regard to my rheumatologic disease.

CTD (cumulative trauma disorder, right?)

Connective tissue disease - it is often very difficult to actually diagnose which CTD you have - especially at the beginning. So is it SLE or is it Systemic Sclerosis or Sjoegren's or a mixture - it is not that clear cut.
I have features of several CTDs.

I know Rituxan is helping my MCAS b/c my MCAS is about as subtle as being hit over the head with a brick. My whole body starts to deteriorate and freak out. Diarrhea multiple times a day unless I just stop eating, intense nausea (rarely actually vomiting), severe tachycardia (non-stop POTS, and feeling like I'm getting high dose distilled norepinephrine directly IV-ed into me all day and night), profuse putrid sweating out every and all pores in my body, zero appetite, losing sensation and motor control in hands and feet -- all this all the time as I'm literally allergic to almost every ridiculous thing you can imagine, and more acute exposures further intensify all this and cause impending feeling of doom.
So for me it is easy to tell if a drug like Rituxan is working. No other drug has worked for me for as long as Rituxan has.

I can relate - I can really relate to that. You have my empathy. You have a lot of IgE antibodies, too? Am I right?

Strangely enough I often read studies about how great tryptase is as a diagnostic tool is and while I do agree with that, however most cases I read on online (I'm only counting the ones that explained their MCAS sufficiently and how they were diagnosed) and cases I've learned of in meat-space about others evaluated/diagnosed/treated for MCAS, I noticed most dont have elevated tryptase levels. A little interesting, not sure what it exactly means globally but reliable anecdotes do hold a power of their own and can trump some studies.

I think in MCAS you will most likely do not see tryptase labs like in a mastocytosis patients, but you might see a rise in tryptase like the 2 + 20% rule from baseline. But what is you baseline, if you are almost constantly reacting I wonder? And if you are reacting severely, I for instance have other problems than going to a lab and getting tryptase drawn and of course making sure, that they handle it adequately.

 

[Blake2e]

That is good news - I am happy that the combination is working. There are some mast cell specialists (like Prof A), who are of the opinion RTX has no place in treating MCAS. The only place where according to his opinion would make sense is, if one has *consistently* elevated anti-IgE oder anti-FcEpsilonRI Antibodies. So even if you are positive one time - it does not mean it is autoimmune in his opinion. But I think RTX has a place in difficult cases with a severely deranged immune systems.

The 2 other MCAS allergists I saw both said the same thing to me when they saw that Im on Rituxan. [Edit: didnt finish thought. They said that to me but they were clearly wrong, at least in my case.]I think that's a fine general rule he has, Rituxan is typically used for B cell related issues such as autoimmunes. And not every MCAS has very high IgE levels like I once did.

It seems that in persons with AERD/salicylate sensitivity and MCAS there are often genetic abnormalities regarding histamine metabolism, which make the treatment a bit more difficult - at least that is what my GI specialist is saying and he has a lot of experience with persons with salicylate intolerance (which he think is a phenotype of a certain MCAS form.) I can even react to salicylates in soaps with severe facial swelling, so I am one of his most severe cases.

The facial swelling I get doenst go past just being mild. I can sympathize with being ultra sensitive to an allergen that even the tiniest amount of it can lead to extreme reactions.

That sounds very annoying. I am sorry - I hope you are better now. It my MCAS takes a turn for the worse I do get tachycardia (160-180 bpm) and I get severe hypotension and I can faint if it is bad enough. Also I start sweating severely and I can generate so much heat, that my glasses steam. (Looks quite funny, does not feel funny). Do you suffer from frequent anaphylaxis? Some doctors here are only diagnosing MCAS if you have full blown anaphylaxis...

Thats really crazy tachycardia, I never recorded anything over 160 BPM, but I also purposefully avoid measuring it as it stresses me out. During my POT screening they got me as high as 158, it felt fast but not that fast compared to how nuts my autonomic dysfucntion could make my heart go.

Heat MCAS generates is no joke, could be 15 F outside and I'd have to take my coat and sweater off since I overheat so much.

I can relate - I can really relate to that. You have my empathy. You have a lot of IgE antibodies, too? Am I right?

Highest recorded was just below 900 kU/L and that was a 4 or so months before peak MCAS sensitivity so it was likely even higher. Last I checked I was at 311. Whats your IgE like?

I think in MCAS you will most likely do not see tryptase labs like in a mastocytosis patients, but you might see a rise in tryptase like the 2 + 20% rule from baseline. But what is you baseline, if you are almost constantly reacting I wonder? And if you are reacting severely, I for instance have other problems than going to a lab and getting tryptase drawn and of course making sure, that they handle it adequately.

A problem I was having was getting it drawn when I was not reacting to anything to get a base value. But despite being so reactive, my tryptase was never elevated in any significant way.

 

[LiLaLu]

The 2 other MCAS allergists I saw both said the same thing to me when they saw that Im on Rituxan. I think that's a fine general rule he has, Rituxan is typically used for B cell related issues such as autoimmunes. And not every MCAS has very high IgE levels like I once did.

I get the general rule... But I think if you have a case with very high IgE or with many different autoantibodies it can be worth a shot imho. Problem is doctors are trained to act according to guidelines and there are none in our cases. There is one case report about RTX as a treatment of severe idiopathic anaphylaxis and this is often MCAS. This is the only case I found in literature so far about Rituxan use in something that might be MCAS. In chronic spontaneous urticaria it is also used with success and in some cases this condition is an autoimmune disease targeting mast cells.

The facial swelling I get doenst go past just being mild. I can sympathize with being ultra sensitive to an allergen that even the tiniest amount of it can lead to extreme reactions.

It can get pretty bad in my case - at one point I actually could not see anything, but right now I am mostly just "puffy"...

Highest recorded was just below 900 kU/L and that was a 4 or so months before peak MCAS sensitivity so it was likely even higher. Last I checked I was at 311. Whats your IgE like?

It is normal. Salicylate sensitivity is a non IgE mediated mechanism for instance and I seem to suffer more from activation of such inflammatory pathways than the typical allergic IgE pathways and of course I do have autoimmune special effects...

A problem I was having was getting it drawn when I was not reacting to anything to get a base value. But despite being so reactive, my tryptase was never elevated in any significant way.

I can relate to that, too. Same here. I actually missed the 2 + 20% rule by 0,2 and that really annoyed me. If I had the blood drawn maybe 15 minutes earlier or later that day I might have fulfilled this criterion. And like you I also have trouble "finding" the baseline as my mast cells are acting nuts most of the time.

 

[Gingergrrl]

I am catching up on your threads @Blake2e (and it is great to see you @LiLaLu and I am so hoping that just ONE of your doctors will come on board and start to help you )

Rituxan is definitely less toxic and, in my view less risky, than Azathioprine.

I agree with this, and I don't think any one would disagree from a clinical perspective. The issue (for the government or the insurance company) is that that AZA is so much cheaper than Ritux.

Ive been putting off going to the dentist (but still taking great care of teeth despite allergy to a toothpastes and all other oral hygiene products) as I'm a little concerned with having something placed in my mouth and having that be another allergen that is constantly triggering me.

I am in the exact same situation, Blake, and have seen both a regular dentist and a holistic dentist and have several (minor) cavities that need to be filled but am literally frozen re: how to proceed b/c the chances are so high that whatever is placed in my mouth, I will be allergic to and it could re-trigger my MCAS and autoimmunity which are in remission.

I have investigated porcelain fillings (vs. composite) and also ozone and remineralization (but this can be problematic in autoimmunity according to a literature review that I read). I need to go back to the holistic dentist and do the "Clifford Test" which is super expensive blood test, that might be a scam, BUT it would help narrow down which materials I react to and then she can choose the best materials and my MCAS doctor said that he would create skin patches that I could wear for 48 hours.

I am doing a colonoscopy at the end of Aug and when it is over, my next project is figuring out how to do this dental work (which is really a problem for people w/MCAS like me who are allergic to dyes which are in all the dental materials from the composites to the adhesives, etchants, primers, etc).

I think in MCAS you will most likely do not see tryptase labs like in a mastocytosis patients

This is my MCAS doctor's opinion (that you will usually not have elevated Tryptase in MCAS like you do in Mastocytosis).

The 2 other MCAS allergists I saw both said the same thing to me when they saw that Im on Rituxan. I think that's a fine general rule he has, Rituxan is typically used for B cell related issues such as autoimmunes.

My MCAS doctor prescribed Ritux for me for B-cell autoimmunity after he saw my MCAS go into remission from high dose IVIG and the improvement in my breathing and muscle strength. He spoke w/my main doctor, and also looked at labs & articles that I brought him, and he agreed that (long-term) IVIG was like a band-aid vs. Ritux had the potential to bring about complete remission. IVIG was also much more expensive for my insurance so we were able to present our plan in a coherent way to them.

But in my case, the Ritux was for autoimmunity, not MCAS, which was already in remission from IVIG. Although we continue to assume that I remain allergic (anaphylaxis level) to food dyes, contrast dyes, and the meds that I have been allergic to life-long. It is possible this is no longer the case but I am not willing to take the risk!

 

[Blake2e]

I get the general rule... But I think if you have a case with very high IgE or with many different autoantibodies it can be worth a shot imho. Problem is doctors are trained to act according to guidelines and there are none in our cases. There is one case report about RTX as a treatment of severe idiopathic anaphylaxis and this is often MCAS. This is the only case I found in literature so far about Rituxan use in something that might be MCAS. In chronic spontaneous urticaria it is also used with success and in some cases this condition is an autoimmune disease targeting mast cells.

I think I got lucky with convincing my docs to give me Rituxan. My main Allergist is a biochem nerd like me and gets into it with me, and like me, hes open to something if theres good data supporting it. That right there is pure luck that I found a doctor like that. Then on top of that, this Allergist and the original Hem-onc that prescribed me Rituxan are very religious. So I 100% agree with you. Most docs are stuck following FDA approved indications. FDA has a lot of problems, mainly corruption, and doing as they say like it's word from G-d is ridiculous to say the least. When I convinced my docs to give me Rituxan, I reviewed about a dozen studeis, 1 or 2 were MCAS related and the rest related to IgE disease.

It can get pretty bad in my case - at one point I actually could not see anything, but right now I am mostly just "puffy"...

If I got outright noticeable reactions like that I dont think I wouldve been able to graduate professional school.

It is normal. Salicylate sensitivity is a non IgE mediated mechanism for instance and I seem to suffer more from activation of such inflammatory pathways than the typical allergic IgE pathways and of course I do have autoimmune special effects...

Non-IgE mediated MCAS can be hard to track since its pathophophysio can be hard to pin down. For this, Rituxan may have some immunomodulating effects that improve this but it likely wont be the solution for this specific problem

I can relate to that, too. Same here. I actually missed the 2 + 20% rule by 0,2 and that really annoyed me. If I had the blood drawn maybe 15 minutes earlier or later that day I might have fulfilled this criterion. And like you I also have trouble "finding" the baseline as my mast cells are acting nuts most of the time.

My tryptase ranged from 3.4 to 4.7. I also had trouble finding the right time to test it after an acute reaction. I did it both 20 minutes after a bad reaction and 2 hours after the reaction (when the symptoms were easing up). I seem to just not have this mediator elevated. I still dont have a good baseline, since I've been having more good days I should probably check them now. But I no longer really care enough to.


***

I am catching up on your threads @Blake2e (and it is great to see you @LiLaLu and I am so hoping that just ONE of your doctors will come on board and start to help you )

Just got my Xolair today and I'm already noticing a good difference. I think for me the key is Rituxan every 2 months. The big tell for me will be when my IgE total is below 50 (last I checked it just over 300), and how my symptoms feel then.

I am in the exact same situation, Blake, and have seen both a regular dentist and a holistic dentist and have several (minor) cavities that need to be filled but am literally frozen re: how to proceed b/c the chances are so high that whatever is placed in my mouth, I will be allergic to and it could re-trigger my MCAS and autoimmunity which are in remission.

I have investigated porcelain fillings (vs. composite) and also ozone and remineralization (but this can be problematic in autoimmunity according to a literature review that I read). I need to go back to the holistic dentist and do the "Clifford Test" which is super expensive blood test, that might be a scam, BUT it would help narrow down which materials I react to and then she can choose the best materials and my MCAS doctor said that he would create skin patches that I could wear for 48 hours.

I am doing a colonoscopy at the end of Aug and when it is over, my next project is figuring out how to do this dental work (which is really a problem for people w/MCAS like me who are allergic to dyes which are in all the dental materials from the composites to the adhesives, etchants, primers, etc).

For me, repeated exposure to anything will add that to my list of allergens. If it was done all at once, then it might be fine? Not sure. But this probably doesnt matter as my allergies are non-stop and one more thing on top of all that wont make much of a difference in how I feel. It all needs to be suppressed anyways.

Colonoscopy, just as a precaution?

This is my MCAS doctor's opinion (that you will usually not have elevated Tryptase in MCAS like you do in Mastocytosis).

For the longest time I always read elevated tryptase has more to do with mast cell population size like that found in mastocytosis and it only transiently goes slightly up during allergic reactions for some cases and when it does its hard to capture on a blood test.

 

[LiLaLu]

I think I got lucky with convincing my docs to give me Rituxan. My main Allergist is a biochem nerd like me and gets into it with me, and like me, hes open to something if theres good data supporting it. That right there is pure luck that I found a doctor like that. Then on top of that, this Allergist and the original Hem-onc that prescribed me Rituxan are very religious. So I 100% agree with you. Most docs are stuck following FDA approved indications. FDA has a lot of problems, mainly corruption, and doing as they say like it's word from G-d is ridiculous to say the least. When I convinced my docs to give me Rituxan, I reviewed about a dozen studeis, 1 or 2 were MCAS related and the rest related to IgE disease.

Wow - great you found such a biochem nerd... and I agree you have to review studies. But I found that quite often doctors are getting really upset if you present them the research - even if you approach them extremely carefully.

Non-IgE mediated MCAS can be hard to track since its pathophophysio can be hard to pin down. For this, Rituxan may have some immunomodulating effects that improve this but it likely wont be the solution for this specific problem

That is true, but I think I would be helped a lot if my immune system would stop producing autoantibodies of all sorts and maybe if my immune system calms down, the MCAS would be a bit more easily handled. But of course - that is speculation...

My tryptase ranged from 3.4 to 4.7. I also had trouble finding the right time to test it after an acute reaction. I did it both 20 minutes after a bad reaction and 2 hours after the reaction (when the symptoms were easing up). I seem to just not have this mediator elevated. I still dont have a good baseline, since I've been having more good days I should probably check them now. But I no longer really care enough to.

We are about in the same range - I am a bit lower about 2,5 actually - after an reaction I got it to 4,5 - but that's it.

For me, repeated exposure to anything will add that to my list of allergens. If it was done all at once, then it might be fine? Not sure. But this probably doesnt matter as my allergies are non-stop and one more thing on top of all that wont make much of a difference in how I feel. It all needs to be suppressed anyways.

I do notice this, too. Do you rotate the things your eating, so that your body does not have the chance to build up or are you so limited food wise, that you cannot rotate? I am kind of stuck with only very few foods and mostly elemental diet (yummy - not) and after a time I even started to reacting to the elemental diet and had to switch formulas.

@Gingergrrl

Regarding your dentist. I am about to have another treatment with orthodontics and I would rather don't do it... So I can absolutely relate how you feel. What I felt is kind of accurate is a BDT (Basophil degranulation test, they check if your basophils produce leukotrienes, which is also a mast cell mediator and if so, you will probably react with an inflammatory like allergic response to it.) Maybe you can pursue something like this in the US?

I agree with this, and I don't think any one would disagree from a clinical perspective. The issue (for the government or the insurance company) is that that AZA is so much cheaper than Ritux.

Yeah it is - my doc suggested going on an even higher dose yesterday. I find it actually kind of funny right now. At first everybody was worried because my labs changed pretty strongly as a response to AZA and right now... "You seem to be tolerating it just fine, we just have to tolerate a few side effects and your labs being kind of screwed."

But in my case, the Ritux was for autoimmunity, not MCAS, which was already in remission from IVIG. Although we continue to assume that I remain allergic (anaphylaxis level) to food dyes, contrast dyes, and the meds that I have been allergic to life-long. It is possible this is no longer the case but I am not willing to take the risk!

Getting IVIg for MCAS is still kind of impossible for most I think... even in pretty bad cases the cost and lack of experience in the medical profession are a huge problem and studies are lacking - there are only a few case reports.

Getting RTX for autoimmunity was the best choice in your case imho. I am happy that you are better. But I can totally relate that you do not want to get in such a reactive state again and do not want to take any risks MCAS wise. But I think you are in a much better place now and I think and hope that you can tolerate a few more bumps along the road now...

Edited for clarity and mistakes.

 

[Gingergrrl]

Just got my Xolair today and I'm already noticing a good difference. I think for me the key is Rituxan every 2 months. The big tell for me will be when my IgE total is below 50 (last I checked it just over 300), and how my symptoms feel then.

That is great news that you are already feeling better from the Xolair. I have never measured IgE in relation to (prior) IVIG or to Rituximab. My doctors did measure it several times in the past few years and it was always elevated so I just assumed that it always will be in my case.

If it was done all at once, then it might be fine? Not sure.

Re: dental work, at this point, it would be impossible to know what I would react to without getting the materials and doing some kind of skin patch test (before things are drilled into my mouth/gums ). I am pretty sure that composite fillings are not an option for me b/c they are all "tooth colored" and contain yellow dyes. I think the porcelain fillings (which are dye-free) are my best option.

I don't think I am willing to risk it with the dental ozone (from what I have read) b/c it is contraindicated in autoimmunity. I just need to call the holistic dentist's office back and set up a time to go pick up the Clifford Test kit and make an appt for the blood draw with Quest. I am just dreading the entire thing to be honest.

Colonoscopy, just as a precaution?

It is a precaution (and I have no symptoms) but my mom died of colon cancer last year and all of her doctors (and all of my doctors) said that I need to do it.

That is true, but I think I would be helped a lot if my immune system would stop producing autoantibodies of all sorts and maybe if my immune system calms down, the MCAS would be a bit more easily handled. But of course - that is speculation...

This makes sense to me and I find it strange (and unlikely) that in both of our cases, and so many others that I know of, that we would have just randomly at the same time developed all of these obscure autoantibodies AND gotten MCAS. It seems much more likely that the two events were connected even if we do not yet know how.

Do you rotate the things your eating, so that your body does not have the chance to build up or are you so limited food wise, that you cannot rotate? I am kind of stuck with only very few foods and mostly elemental diet (yummy - not) and after a time I even started to reacting to the elemental diet and had to switch formulas.

I know you were asking Blake, but when I was having anaphylaxis to food in 2015, once I became stable enough on meds, I was able to rotate about 4-5 foods and then started following the SIGHI diet (from Switzerland) and slowly added in more foods that were low histamine.

@LiLaLu Is the elemental diet something that you eat or drink by mouth or are you tube fed now?

Regarding your dentist. I am about to have another treatment with orthodontics and I would rather don't do it... So I can absolutely relate how you feel. What I felt is kind of accurate is a BDT (Basophil degranulation test, they check if your basophils produce leukotrienes, which is also a mast cell mediator and if so, you will probably react with an inflammatory like allergic response to it.) Maybe you can pursue something like this in the US?

Thank you for this info and I just wrote it down so I can Google it. I had not heard of the BDT test. Is it something that specifically relates to dental work (to figure out what you are reactive to like the Clifford Test)? I wasn't sure if I understood? (Sorry we are going off-track, Blake )

Yeah it is - my doc suggested going on an even higher dose yesterday. I find it actually kind of funny right now. At first everybody was worried because my labs changed pretty strongly as a response to AZA and right now... "You seem to be tolerating it just fine, we just have to tolerate a few side effects and your labs being kind of screwed."

I really wish that they were not having you go higher on AZA (especially now that your labs are abnormal from it!) vs. trying Ritux or other less dangerous options.

Getting IVIg for MCAS is still kind of impossible for most I think... even in pretty bad cases the cost and lack of experience in the medical profession are a huge problem and studies are lacking - there are only a few case reports.

My doctors did not have me try IVIG for MCAS and had hoped it would improve my muscle and breathing weakness (and other symptoms). We also did not use MCAS as the diagnostic code for IVIG (even though MCAS was one of my diagnoses) but we used something else. When IVIG almost immediately put my MCAS into remission, it was a huge surprise! My MCAS doctor said that he has had many patients in which IVIG put their MCAS into remission but in my case, it was not why we did it and that was sort of an added bonus.

Getting RTX for autoimmunity was the best choice in your case imho. I am happy that you are better. But I can totally relate that you do not want to get in such a reactive state again and do not want to take any risks MCAS wise. But I think you are in a much better place now and I think and hope that you can tolerate a few more bumps along the road now...

It definitely was the best choice for me and one of the best decisions I have ever made. I just can't risk the dental work (something I am potentially allergic to) being drilled permanently into my mouth and having it trigger a huge reaction and end my remission. It's something I agonize over but since I figured out a way to safely do the colonoscopy (even though it took me about 1.5 yrs to solve!) I am hoping to have an a-ha moment re: how to safely do the dental work.

 

[stridor]

I have not read this entire thread. I rarely come to this site any longer as CFS has been behind me for a while. I still follow Freddd´s protocol. My histamine issues are pretty typical. Dermatographism, rashes and hives. From single hives up to my entire back or often both ribcages.

I have a lot of food sensitivities which can bring this on (as well as folliculitis, eczema and psoriasis of the scalp). I don´t have a colon and live with permanent SIBO. I have some type of yeast and am missing the gram (+) bacteria. So, permanent dysbiosis as well.

Recently, I have been starving some of the bacteria with a FODMAP diet and using a product called Biome Balance. It has a lot of ingredients similar to parasite products. This approach has allowed me to have less and less outbreaks. This is my 5th day in a row without a hive...touch wood. That is opposed to 1-4 outbreaks a day.

For the record, coconut kefir did the same thing until I sensitized to the coconut. Again, I suspect that there was a change with gut flora. There are e-coli which if a person has a leaky gut, (100% of people with SIBO do), will leak LPS (lipopolysaccharides) into the bloodstream and the immune system goes nuts.

You can look up LPS and just about any psychiatric condition and see that there is a lot more research to be done. So when is MCAS, not MCAS? When a sensitive and unstable histamine system is being bombarded by molecules it defines as invading bacteria and reacts strongly. As everyone knows, 80% of the immune system is lined up at the gut wall. This is the first place to look for the source of our problems.

 

[LiLaLu]

Just a quick answer

Thank you for this info and I just wrote it down so I can Google it. I had not heard of the BDT test. Is it something that specifically relates to dental work (to figure out what you are reactive to like the Clifford Test)? I wasn't sure if I understood? (Sorry we are going off-track, Blake )

You can test all kind of things, but especially dental materials. Maybe this helps: https://www.imd-berlin.de/fileadmin...lisch/122_Basophil_degranulation_test_BDT.pdf

I really wish that they were not having you go higher on AZA (especially now that your labs are abnormal from it!) vs. trying Ritux or other less dangerous options.

Would wish that, too - for more info see my member's only post. I do not feel that comfortable sharing everything here. I hope you do not mind using the other thread.

My doctors did not have me try IVIG for MCAS and had hoped it would improve my muscle and breathing weakness (and other symptoms). We also did not use MCAS as the diagnostic code for IVIG (even though MCAS was one of my diagnoses) but we used something else. When IVIG almost immediately put my MCAS into remission, it was a huge surprise! My MCAS doctor said that he has had many patients in which IVIG put their MCAS into remission but in my case, it was not why we did it and that was sort of an added bonus

It gives me hope, that there are some people like you... that got their MCAS under control. I am worried because my MCAS has been progressing at an incredibly high speed over the course of the last year...
I think nobody here would consider IVIg for MCAS, just for autoimmunity after everything else has failed and one's life is in danger.

It definitely was the best choice for me and one of the best decisions I have ever made. I just can't risk the dental work (something I am potentially allergic to) being drilled permanently into my mouth and having it trigger a huge reaction and end my remission. It's something I agonize over but since I figured out a way to safely do the colonoscopy (even though it took me about 1.5 yrs to solve!) I am hoping to have an a-ha moment re: how to safely do the dental work.

You can do that and you will figure something out. I am sure!!! You are so strong and such a fighter and you will make the right decision. I do not know about the Clifford test, but you will do the right thing.

 

[Gingergrrl]

You can test all kind of things, but especially dental materials. Maybe this helps: https://www.imd-berlin.de/fileadmin...lisch/122_Basophil_degranulation_test_BDT.pdf

Thank you for this info and I am going to look at it later. I am not sure yet if this test is available in the US (but have not checked yet).

Would wish that, too - for more info see my member's only post. I do not feel that comfortable sharing everything here. I hope you do not mind using the other thread.

Definitely, and I prefer Member's Only threads or PM's as well.

I think nobody here would consider IVIg for MCAS, just for autoimmunity after everything else has failed and one's life is in danger.

My MCAS doctor actually prescribes low dose IVIG in his other cases to try to re-set the immune system away from the allergic reactions (or in his cases with immune deficiency). We did high dose IVIG (in my case) b/c I had so many other autoimmune problems in addition to MCAS.

You can do that and you will figure something out. I am sure!!! You are so strong and such a fighter and you will make the right decision. I do not know about the Clifford test, but you will do the right thing.

Thank you I am not sure about this Clifford Test either but am thinking I might call them this week to get more info. My gut feeling is that it cannot hurt and anything that can provide additional info re: which dental materials I have a better chance of tolerating can only work in my favor.