Mast Cell Activation

[firewatcher]

I think it is more a clinical diagnosis rather than based on test results. The urine methylhistamine can prove that histamine relase took place but I think it is hard to "catch" an episode and the urine tests are often negative even in people who do have MCAD. (I'm sure Julie or one of the others will correct me if I've got that wrong).

Flop

From my understanding, Flop, you are correct. It is the constellation of symptoms more than the methylhistamines. But IF you can get the "enriched" sample and it is high for methylhistamines it aids in a questionable dx.

"Yes, my allergist still has me carry orders for serum tryptase/blood and methylhistamine and prostaglandin-D2/urine in my wallet so that I can have them checked after an episode. Your PCP can easily order these tests. They are best done immediately after (w/i an hour or so of) an episode of extreme symptoms/flushing/anaphylaxis. The problem I have is that I'm pretty wiped out after an episode. I usually fall asleep. I couldn't imagine driving into the lab to get tested when I feel that bad...

If you can get these tests done and they show any high levels; you probably should look further into MCA.

Julie"

[EarthMother]

is it possible to be highly allergic to something one day and not the next?

This is a really interesting question. As I did a detailed log of everything I ate for over three months while I was on a rotation diet and then a statistical analysis on the spreadsheet to see if there was any correlation with particular foods and ensuing "flares". But I was never able to pin point a culpret. Some days it seemed like "corn" wold trigger a reaction. Or avocado. Or cheese. But then other days I could eat a quesidilla with guacamole and not have a problem at all.

Looking back it certainly could have been blood sugar issues, since that is a problem I learned later that I was having at that time.

However, there is another possible cause I came across while reading about "brain toxins". For people who are sensitive to MSG there is a whole list of foods that contain high levels of "free glutamates". In some cases depending on how sensitive you are ... it may not be how much free glutamate a particular food has in it ... but how many free glutamates are in the meal as a whole, or even how many you consumed that day. So in my case, the chedder cheese may have been fine if all of the other foods I had eaten that day were relatively low in free glutamates. But if I was loaded up on these MSG triggers already then any one of the high glutamate foods could have sent me over the edge.

Now, I don't even know if these "brain toxins" are real or not. But it does make sense if you apply the same thought/logic to histamine producing foods. If you are already at your threshold than any food that contains histamine producing reactions might set you over the edge on one day but on another day (when you may by chance be lower on histamine overall in your body) the same food would not produce any reaction.

This is of course for people who have food "sensitivities" and not out right allergies. If you are truly allergic to peanuts or shell fish this doesn't apply. But for those of us who seem to have reactions when we eat ... but have not been able to pin point the specific allergen, it could be that it is about the overal "load" rather than the individual item.

TOTAL SPECULATION ON MY PART!

~EM

[iheartcats]

is it possible to be highly allergic to something one day and not the next?

This is a really interesting question. As I did a detailed log of everything I ate for over three months while I was on a rotation diet and then a statistical analysis on the spreadsheet to see if there was any correlation with particular foods and ensuing "flares". But I was never able to pin point a culpret. Some days it seemed like "corn" wold trigger a reaction. Or avocado. Or cheese. But then other days I could eat a quesidilla with guacamole and not have a problem at all.

Looking back it certainly could have been blood sugar issues, since that is a problem I learned later that I was having at that time.

However, there is another possible cause I came across while reading about "brain toxins". For people who are sensitive to MSG there is a whole list of foods that contain high levels of "free glutamates". In some cases depending on how sensitive you are ... it may not be how much free glutamate a particular food has in it ... but how many free glutamates are in the meal as a whole, or even how many you consumed that day. So in my case, the chedder cheese may have been fine if all of the other foods I had eaten that day were relatively low in free glutamates. But if I was loaded up on these MSG triggers already then any one of the high glutamate foods could have sent me over the edge.

Now, I don't even know if these "brain toxins" are real or not. But it does make sense if you apply the same thought/logic to histamine producing foods. If you are already at your threshold than any food that contains histamine producing reactions might set you over the edge on one day but on another day (when you may by chance be lower on histamine overall in your body) the same food would not produce any reaction.

This is of course for people who have food "sensitivities" and not out right allergies. If you are truly allergic to peanuts or shell fish this doesn't apply. But for those of us who seem to have reactions when we eat ... but have not been able to pin point the specific allergen, it could be that it is about the overal "load" rather than the individual item.

TOTAL SPECULATION ON MY PART!

~EM

I wonder about this - I sometimes get hives (on my chest usually) eating. I can also get them after showers/stress/etc. I can feel the burning start and there they go, but primarily only on my chest. I can eat the same thing 4 times a week and only have this one meal. I was concerned about food allergies at one point - but I could never pinpoint it to anything either. I haven't had a hot beverage in ages, but wonder if that would do it, too...

I never took the details like you did (you are awesome for doing that) but I don't think it's just one food for me either. I eat eggs, milk, soy, etc. without any trouble usually. But tonight some Mac & Cheese and Carrots? Some hives. I do avoid nuts since I had a rash with Cashews once just because it's a pretty bad allergy to have...otherwise I try not to let it get to me because often times the hives are gone within an hour or less.

I am getting an allergy test (skin) Monday. I have to go off my Allegra Friday - Monday (which will be annoying, but at least it's winter. Lessens the allergies outside). I'll post if I find out anything I don't know I'm allergic to. I know I am allergic to dust mites, pollen, some molds, etc. Rather standard fair.

I'm glad I'm not the only one who hives/flushes randomly.

[iheartcats]

I'm back from the allergy test - my histamine control really blew up and was itchy, but I have no food allergies. I've been very careful about nuts for no reason - which is frustrating because I had to give up desserts when going out to eat. Now the allergist feels confident I can eat away...the hives aren't really tied to anything specific. Chocolate cake is coming up...

He's seen this before (random hives)...and the heat hives (shower, hot, etc) are from Mast Cells leaking, just like we've talked about. He is wondering if it's tied to POTS/Autoimmune...and he has seen people with my symptoms (the allergy-hives part) get better in a couple years and they go away. Makes you wonder!

I have been tested for standard allergies before (Outdoor Mold and Cats are mild to moderate, Dust Mites and Pollens are severe). My cat doesn't make my symptoms worse so he's staying (of course!) but no more cats unless I get allergy shots. For my more standard allergies he's comfortable starting me on an allergy shot regime after I see Grubb, even if I am on a Beta Blocker.

He does want me tested (that Tryptase thing, ANA, and IGE) to rule out Mastocytosis (usually shows on the Tryptase). And the others as standard test he does for something that's problematic with Autoimmune conditions. I've tested positive for ANA before, so who knows what's going on with the Autoimmune stuff. It's hard to pin down with POTS, I think.

He agrees it's probably not Mastocytosis, and isn't familiar with MCAD but at least was interested in hearing about it. I may drop off some paperwork for him since he didn't brush it off.

I am switching from Allegra to Zyrtec because Zyrtec can work better for skin hives/allergies (grrr..I just bought 90-days of Allegra, too!) and if that doesn't do it to add Zantac. If it continues to be really bad, or gets really bad seasonally, I can do Allegra in the AM, Zantac in the AM, and Zyrtec in the PM (but that makes you tired so I feel it's worst-situation treatment).

It'll be a week or two before the blood tests results so we'll see how things go. I hope everyone keeps contributing to this thread because even if we don't have Masto or MCAD, allergies seem tied to POTS/Autoimmune disorders, etc. and keeping them under control can really be helpful for our symptoms. I've heard Grubb likes to keep allergies under control, too, so looking forward to seeing him armed with all my info!

[juliegee]

Hey Cat Lady-

So happy that testing's behind you! I won't go off my allergy meds for testing any more- too dangerous. Your appt. sounds very positive. I'm glad you're getting your tryptase checked. Jennifer's right. Right after that hive outbreak/panicky feeling would have been a great time to check tryptase, methlyhistamine, etc. I've got my finger's crossed that your new med regimen does the trick. By all means, drop off some of the MCAD articles for your allergist. Because of your symptoms and POTS DX, it's a real possibility. Keep us posted on your progress.

Julie

[iheartcats]

My Tryptaste test was negative (fortunately - and as expected - but Allergist wanted to be safe).

I've been on Zyrtec and am still getting random hives, albeit not as bad as before. Still annoying, though! My Allergist said give Zyrtec a try and I can always add Zantac (both of these meds are OTC in the States) if the hives didn't improve enough.

Well, they are still bothersome enough I'd like to give Zantac a try. I didn't ask what dosage, but am assuming whatever the box says.

For those of you that take an allergy medicine + Zantac, what was your starting dose? I'll probably just go by what is on the box until my follow-up appointment in a couple months and go from there. But I hope it helps! These hives are frustrating.

[janiedelite]

For those of you that take an allergy medicine + Zantac, what was your starting dose? .

I take 10mg zyrtec once a day and 150mg zantac twice a day. I have really bad acid reflux and nausea, though, so you can take 75mg twice a day of zantac.

[flop]

I take Ranitidine (Zantac) 150mg twice a day. That is the dose for acid-reflux but it certainly helps my allergies (it was prescribed by my GP for allergies on my suggestion).

In the UK the OTC dose available to buy is only 75mg.

Flop

[iheartcats]

I think I'll start with 75mg twice a day (that's the box I grabbed, anyway!) so I have room to increase dosage if I need to.

It's cheaper if I get it through insurance so will ask the doctor if I should increase next month.

Thanks so much!

[ramakentesh]

An interesting read. Dr Julian Stewart suggested that while there are a select group of POTS patients (who generally demonstrated elevated norepinephrine levels) who also have comorbid Mast Cell issues there wasnt any clear evidence on whether one was causing the other. Or more, which was causing which.

Some POTS patients may also have an autoimmune illness (Dr Grubb believes that 90% of POTS patients have autoimmune mediated peripheral neuropathy). People with autoimmune illnesses also complain of food intolerances and unusual allergic reactiveness.

Tumor Necrosis factor Alpha is implicated in many inflammatory and autoimmune illnesses and it is also believed to be 'vaso-reactive'.

An interesting area and I look forward to further research as it is published.

[firewatcher]

An interesting read. Dr Julian Stewart suggested that while there are a select group of POTS patients (who generally demonstrated elevated norepinephrine levels) who also have comorbid Mast Cell issues there wasnt any clear evidence on whether one was causing the other. Or more, which was causing which.

Some POTS patients may also have an autoimmune illness (Dr Grubb believes that 90% of POTS patients have autoimmune mediated peripheral neuropathy). People with autoimmune illnesses also complain of food intolerances and unusual allergic reactiveness.

Tumor Necrosis factor Alpha is implicated in many inflammatory and autoimmune illnesses and it is also believed to be 'vaso-reactive'.

An interesting area and I look forward to further research as it is published.

Mast cells are the supposed "cellular missing link" in the development of autoimmunity. The mast cells supposedly bind to your own cells, marking them as "foreign" and BAM, the immune system starts to destroy YOU instead of a virus, allergen, etc. The research is really new and most of the relevant articles that I can find are in the Mast Cell Article thread. The "big" one that started all this was the halting of new MS lesions by a histamine blockade. I don't think it's a chicken/egg thing with POTS, I think that somehow we hyperadrenergic types simply have a genetic predisposition to systemic overreaction. There are probably a lot of other people out there who have similar MCAD symptoms and develop autoimmune disorders, it has just been noticed more by our researchers, like EDS.

[juliegee]

An interesting read. Dr Julian Stewart suggested that while there are a select group of POTS patients (who generally demonstrated elevated norepinephrine levels) who also have comorbid Mast Cell issues there wasnt any clear evidence on whether one was causing the other. Or more, which was causing which.

Some POTS patients may also have an autoimmune illness (Dr Grubb believes that 90% of POTS patients have autoimmune mediated peripheral neuropathy). People with autoimmune illnesses also complain of food intolerances and unusual allergic reactiveness.

Tumor Necrosis factor Alpha is implicated in many inflammatory and autoimmune illnesses and it is also believed to be 'vaso-reactive'.

An interesting area and I look forward to further research as it is published.

Through my mast cell group, I've become friendly with one of the researchers doing some of the Tumor Necrosis factor Alpha work and I'm connecting her with Dr. Rowe at Hopkins. I want more research done connecting POTS/NCS/NMH with mast cell disorders!

[flop]

Wow, this really is an interesting and evolving field of research. The more I read, the more I suspect that I am also one of the POTS/MCAD bunch.

My norepinepherine levels were within normal limits so I was told that I am not hyperadrenergic. However I do get an elevated BP on standing and exercise (along with a marked tachycardia) and I think that elevated BP is a sign of hyperadrenergic POTS? My BP duing testing was often 95-110 diastolic wich is very high compared with my supine levels of 70-80 mmHg.

Flop

[firewatcher]

Wow, this really is an interesting and evolving field of research. The more I read, the more I suspect that I am also one of the POTS/MCAD bunch.

My norepinepherine levels were within normal limits so I was told that I am not hyperadrenergic. However I do get an elevated BP on standing and exercise (along with a marked tachycardia) and I think that elevated BP is a sign of hyperadrenergic POTS? My BP duing testing was often 95-110 diastolic wich is very high compared with my supine levels of 70-80 mmHg.

Flop

My norepi levels were low normal, but my endo did not test them like an autonomic specialist would. I don't think that they have to be high, you just have to overreact to it. My dx was based on BP and type of response to the standard orthostatic tests.

[ramakentesh]

Some of the major researchers on POTS (Julian Stewart and hte Baker Institute) are not even sure that any POTS patients are truly hyperadrenergic (as in primary cause being excessive norepinephrine levels).

The relative overactivcity of the sympathetic nervous system could be an excessive response to venous pooling - more excessive in some patients than others. Elevated levels of angiotensin II could also account for increased NE levels with reduced Nitric Oxide causing vaso constriction.

[ana_22]

Does the tryptase test exclude systematic mastocytosis?

[juliegee]

Ana,

In a nutshell- YES. If your tryptase level is normal, you most likely do not have systemic mastocytosis. Of course, there are a very few rare exceptions. However, if you continue to have mast cell symptoms that improve with H-I, H-2, antileukotreines, etc.- you still need treatment. In that case, there is a likelihood that you are dealing with MCAD.

Julie

[bensman]

In researching mast cells, I came across this thread through my Google search. What a great thread! Those of you involved in this conversation have some brilliant minds. I learned a great deal reading through it.

Thanks!

[RichGotsPots]

I read these affect the way your body reacts to heat:

• Allergy medicines (antihistamines)
  
• Some blood pressure and heart medicines (beta-blockers and vasoconstrictors)
  
• Diet pills and illegal drugs such as cocaine (amphetamines)
  
• Laxatives
  
• Some medicines that treat mental health conditions (antidepressants and antipsychotics)
  
• Seizure medicines (anticonvulsants)
  
• Water pills (diuretics)
  

[Serbo]

seeing my endo tomorrow about this allergy blow up I have had. Going to request MCAD testing, has the testing moved on @ all, or is it still the same 2 tests? Getting annoyed now not being able to walk or go near my dogs.

[anaphylaxing]

Just in case any of you are interested. I Have ?MCAS/D, POTS, adrenal insufficiency too and just started a blog (yesterday) to track my symptoms/prorgression

http://mastcelladrenalinsufficiencypots.blogspot.com/

[juliegee]

Might be a traditional allergy- ever been tested? If so, standard treatment and shots might help.

MCAD is suspected, when there is a unique constellation of symptoms AND no (IgE) allergy. However, to confuse the issue, some with MCAD can also have traditional allergies

As far as diagnostic criteria, the World Health Organization (WHO), has still NOT reached a consensus from their September 2010 meeting in Stockholm. A consensus proposal HAS recently been published, with many of the same authors who wrote the criteria for systemic mastocytosis. I would be very surprised if the final consensus differed very mush from this:

Int Arch Allergy Immunol 2012; 157: 215-225

Position Paper

Definitions, Criteria and Global Classification of Mast Cell Disorders with Special Reference to Mast Cell Activation Syndromes: A Consensus Proposal

Peter Valenta, b, Cem Akinc, Michel Arockd, Knut Brockowe, Joseph H. Butterfieldf, Melody C. Carterg, Mariana Castellsc, Luis Escribanoh, Karin Hartmanni, Philip Liebermanj, Boguslaw Nedoszytkok, Alberto Orfaol, Lawrence B. Schwartzm, Karl Sotlarn, Wolfgang R. Sperra, Massimo Triggianio, Rudolf Valentap, Hans-Peter Hornyq, Dean D. Metcalfeg

Abstract

Activation of tissue mast cells (MCs) and their abnormal growth and accumulation in various organs are typically found in primary MC disorders also referred to as mastocytosis. However, increasing numbers of patients are now being informed that their clinical findings are due to MC activation (MCA) that is neither associated with mastocytosis nor with a defined allergic or inflammatory reaction. In other patients with MCA, MCs appear to be clonal cells, but criteria for diagnosing mastocytosis are not met. A working conference was organized in 2010 with the aim to define criteria for diagnosing MCA and related disorders, and to propose a global unifying classification of all MC disorders and pathologic MC reactions. This classification includes three types of ‘MCA syndromes’ (MCASs), namely primary MCAS, secondary MCAS and idiopathic MCAS. MCA is now defined by robust and generally applicable criteria, including (1) typical clinical symptoms, (2) a substantial transient increase in serum total tryptase level or an increase in other MC-derived mediators, such as histamine or prostaglandin D2, or their urinary metabolites, and (3) a response of clinical symptoms to agents that attenuate the production or activities of MC mediators. These criteria should assist in the identification and diagnosis of patients with MCAS, and in avoiding misdiagnoses or overinterpretation of clinical symptoms in daily practice. Moreover, the MCAS concept should stimulate research in order to identify and exploit new molecular mechanisms and therapeutic targets.

Many in the mast cell community are very disappointed with the new proposed criteria. A huge subclass of patients are left in diagnostic limbo with this very strict diagnostic criteria. MANY have difficulty obtaining laboratory documentation of elevated mast cell mediators. Research has proven that intermittent elevated serum tryptase is NOT a reliable indicator of mast cell activation. Serum tryptase and other "accepted" mediators have a very short "shelf life" and are very difficult to catch after an episode as the patient is very often too ill to travel to a hospital for testing. Additionally, many hospitals are not equipped to do this testing. More research is needed to develop better, more reliable, and widely available testing of mediators that are released during mast cell activation. In the meantime, it is very important to find a doctor, who will treat you appropriately and keep you safe, if you cannot meet the current diagnostic criteria.

[Serbo]

^ Thank you for info Julie, much appreciated.

Saw my Endo today she did a serum tryptase test, and urine collection. I was feeling rough but no had no hives or itchyness at the time so I'm not sure if the tests will be of use.

Seeing my Derma in a week, hopefully he will do full allergy testing and repeat tests.

There is certainly something not right. I was standing in the same room as my dogs for 3 minutes earlier and suddenly felt like I was about to faint. I do get dizzy with stress/stimulation (normal for POTS!), but never the hives or allergic response as I understand an MCAD patient would.

Thanks

Aaron

[juliegee]

Good for you, Aaron. In another post I asked WHY you were taking an antihistamine. You just answered that question The serum tryptase will most likely rule out mastocytosis, but not MCAD. And, traditional allergy testing is a great idea. On the off chance you are allergic to NOTHING, MCAD could be a distinct possibility....although you can have traditional allergies with overly reactive mast cells too.

I break out in full-body hives and experience a huge BP drop with pistachios and all testing (scratch & RAST) shows I am not allergic.

I saw that you are having a hard time with antihistamines, maybe give nasalcrom a try. Its an OTC mast cell stabilizer.

Let us know what your testing reveals.