Mast Cell Activation Syndrome (Mcas)

[IrishHeart]

I have a question.  If you know that you can eat large amounts of high histamine foods without symptoms, can you pretty well rule this out as the source of continued problems?

 

 

 

I would think so, yes. but perhaps Jess and Lisa have some other thoughts. 

 

 

ETA: I am not "sure" about anything regarding this thing, however, since it does not seem to be very predictable or consistent.

[IrishHeart]

Of NOTE:

"It is thought that approximately 1% of the population suffer from histamine intolerance (with 80% of these being middle-aged women), similar numbers to what is commonly seen with the likes of food allergies, celiac disease, etc.

 

As with these other reactions however, it is thought that this number might be an underestimation, particularly in light of most individual’s likely lacking awareness of histamine and its potential effects."

 

 

and

 

"Given the associations with other inflammatory states, including neoplastic conditions, it may be prudent, if a diagnosis of histamine intolerance is made, to also look for these underlying conditions (coeliac disease, Crohn’s disease, ulcerative colitis, colonic adenoma). It also pays to assess for some of the nutritional cofactors that are either involved with normal DAO activity (vitamin B6, copper), or histamine breakdown (vitamin C)."

 

Makes sense that someone with celiac or other GI autoimmune diseases would be affected by this HIT then. 

 

 

These thoughts came from a very good article on histamine intolerance with citations here

 

Open Original Shared Link

[GottaSki]

I have a question.  If you know that you can eat large amounts of high histamine foods without symptoms, can you pretty well rule this out as the source of continued problems?  This would be continued problems that come and go, but not in relation to eating high histamine foods.  Can it be for example, that stress is your trigger, and high histamine foods need to be eliminated during a stressful period, but in absence of stress, you can eat all the high histamine foods that you want without experiencing any symptoms?

 

Interesting question.

 

Since there is no one protocol that works for everyone with mast cell disorders, I don't think this is a yes or no question.  If limiting high histamine and histamine inducing foods along with antihistamines and mast cell stabilizers helps the body from reacting to triggers by limiting the amount of histamine and other mediators being released in the body during mast cell degranulation, then it seems prudent to reduce or remove these foods.

 

If a person did have only the one trigger of stress and removing histamine foods during times of stress relieved symptoms then it seems to follow that they could eat more of these foods when not under stress....I just don't see a scenario where there is one clear trigger or a way to know which life event or combination of events would be the catalyst of symptoms.

 

In my opinion, there are just too many pieces to this puzzle for a clear answer.

[Adalaide]

I've mostly be lingering and watching. But I thought I'd just poke my nose in and say that I have this issue too. It took months of being beat over the head with the obvious before I admitted it, mostly because I'm stubborn and it was a third entire group of foods to eliminate and I was very resistant. It made a world of difference for me though. Honestly, the most remarkable and immediate was that I stopped using my allergy medication which I had been taking daily for half my life and only sort of worked. I'm waiting to see what spring is like though, since I do have severe tree pollen allergies.

 

For me personally, the two absolute worst offenders are tomatoes and hard cheeses. Processed is worse, and the harder the worse off I'll be. On the other hand, chocolate doesn't seem to bother me at all. Most other things fall somewhere in between. I balance my preservatives, other cheeses (A POX UPON... SOMETHING!) and pretty much everything else I eat very carefully. Most of the time. And when I don't, I end up with days like today and remember why I'm doing this.

 

I do the whole allergic to heat thing over this too which is darn inconvenient in the summer. I have to plan my whole life around the weather, plan what I'm doing at certain times of day. I almost can't leave home between certain hours at all and even in the evenings in summer and into fall I don't leave home without a sack of ice packs. (Thank you Lisa, saved my butt more than once last year!)

 

The whole thing is annoying, but manageable and life gets better following an appropriate diet. And, for some of us if necessary, we need to follow additional plans to minimize exposure through means other than diet but I'm not sure how many other people that bothers. Even with what seemed at first to be micromanagement of my entire life over this, it's as much second nature now as being gluten free and I'm so much better off. I'll review before hitting farmers markets and roadside stands in the spring (because I have SO MANY things I can't eat, personally), throw a sack of ice packs in my backpack and not give any of this a second thought.

[IrishHeart]

I've mostly be lingering and watching. But I thought I'd just poke my nose in and say that I have this issue too. It took months of being beat over the head with the obvious before I admitted it, mostly because I'm stubborn and it was a third entire group of foods to eliminate and I was very resistant. 

 

 fortunately people who care about you are more persistent than most?

 

...and just be careful of the risotto.xx love, "mom"

[jebby]

Interesting question.

 

Since there is no one protocol that works for everyone with mast cell disorders, I don't think this is a yes or no question.  If limiting high histamine and histamine inducing foods along with antihistamines and mast cell stabilizers helps the body from reacting to triggers by limiting the amount of histamine and other mediators being released in the body during mast cell degranulation, then it seems prudent to reduce or remove these foods.

 

If a person did have only the one trigger of stress and removing histamine foods during times of stress relieved symptoms then it seems to follow that they could eat more of these foods when not under stress....I just don't see a scenario where there is one clear trigger or a way to know which life event or combination of events would be the catalyst of symptoms.

 

In my opinion, there are just too many pieces to this puzzle for a clear answer.

I agree with Lisa that there are too many variables to be able to answer your question for sure. I am on a relatively large mast cell forum and there are many who have minimal symptoms from eating histamine-releasing foods but who have other triggers for MCAS, such as exercise, heat and cold, etc. Although I am have been diagnosed for less than a year, I can say for sure that my mast cell symptoms were out of control last May and September, the 2 months that I have hay fever symptoms the worst (and hence, a higher than normal histamine level at baseline).  I also have no idea if I've had this diagnosis for years and if it was masked by feeling so crappy and run down from undiagnosed celiac disease (I have always had an aversion to most of histamine-rich foods) or if it came on suddenly after I had my 4th child in 2012 (that's when I started to notice all kinds of bizarre symptoms like wheezing and palpitations, brain fog, and out of control IBS).  Now I am rambling, but the point I am trying to get across is that I'm not convinced that it can be ruled out based on not having perceived reactions to high histamine foods.

One last thing I'd like to add is that T.H., who used to be active on the "super sensitive" celiac forum on here was also diagnosed with MCAS in the last year. I am pretty sure that she won't mind that I am sharing this, as she herself posted a thread on mast cell problems on here a while back. We were both diagnosed around the same time.

[Adalaide]

 fortunately people who care about you are more persistent than most?

 

...and just be careful of the risotto.xx love, "mom"

 

Yeah. Amazingly delicious things made of wine and parm are not on my "often" list! It will definitely be on my anniversary list and birthday list every year though because pain be damned, it was so worth it. I really think my stupid IIH and histamine crap play off each other and the capers and lemon? Yeah, both tyramine things I shouldn't be having so the two dishes together for dinner were bad bad bad for me.

 

BTW, when I was at the eye doctor yesterday he asked if I take nsaids and such to manage my IIH headaches and I said that while they work really well, I get rebound pain from a histamine intolerance. I was afraid at this point, because... doctors. Instead he just looked at me with total sympathy and was like yeah, that's really difficult to manage, it's a terrible balancing act. I thought I'd about fall out of the chair! He actually sat there with a straight face and took me seriously instead of looking at me like I was crazy or looking away so he could roll his eyes.

[IrishHeart]

Addy, sometimes we get lucky and a doctor actually knows as much as we do.  Even my GI doc says I know more about celiac

than his colleagues. (scary, right?) 

 

And Jess knows when we talk about doctors with disdain and sarcasm, based on our cumulative bad experiences, we do NOT mean any disrespect to her.

She's different. 

[IrishHeart]

.  Now I am rambling, but the point I am trying to get across is that I'm not convinced that it can be ruled out based on not having perceived reactions to high histamine foods.

One last thing I'd like to add is that T.H., who used to be active on the "super sensitive" celiac forum on here was also diagnosed with MCAS in the last year. I am pretty sure that she won't mind that I am sharing this, as she herself posted a thread on mast cell problems on here a while back. We were both diagnosed around the same time.

 

This begs the question, then...if some of us are having sporadic bouts  of symptoms even in the absence of gluten or possible CC

 

and we have symptoms reminiscent of a glutening

 

then perhaps we are not very sensitive to trace gluten, but in fact, experiencing symptoms due to accumulated histamine in the body.

 

I presented this to my doctor who said "yes, of course, that is possible because as you know it's not always about the gluten."

 

Which is why we all need to consider OTHER reasons for why we may be feeling unwell, despite our clean diets. This is why many of us continue to read and look for answers rather than just assume

"I have celiac. I still feel lousy and this is the way it's supposed to be".

 

I don't buy that! I think we can all achieve a better level of good health.

 

Just a thought!

[anti-soprano]

Hi All,

I wanted to validate a few things from finally reading the literature that has been recommended.  

 

1. Last June I got on this site and b*tched a blue streak because I had tried to wax my face with Nads (natural compound- not chemicals) and I broke out in welts everywhere on my face!  NOW I can laugh about it!!  This finally makes sense.  Apparently,"friction, pressure, or vibration on the skin" is a trigger for me. It's just wonderful to make that connection.  I have avoided waxing since then, because I've been afraid of a repeat performance.  Good thing. I'll just be a little more hairy than the rest from tweezing only.

 

2. Prior to my celiac diagnosis in Aug 2012, I was taking copious amounts of acid reducers as I thought I had GERD, including Zantac for many years.  When it was determined that I did not have GERD, I went off the medication.  That was about July 2012- a month before dx. Interesting, eh? Perhaps these medications are indeed masking some people's awareness of the problem.

 

Thanks again!!  I'll give you an update tomorrow.  I'm taking a highlighted print out of Dr. Jess' blog

[anti-soprano]

Back from the allergist.  I'm not really sure what to think.  He is testing me for serum tryptase to rule out mastocytosis.  If that is positive, then he plans to do the urine test.  When I said that people with MCAS usually test withon normal range for the tryptase, his answer was basically "why do you need a diagnosis for MCAS if you're just going to treat it with antihistamines anyways?".  I kind of see his point, but was wondering what you all thought. Have all of you with it been clinically diagnosed and is there an advantage to obtaining that clinical diagnosis? 

[GottaSki]

I do not have an official diagnosis as such...we have ruled out Mastocytosis, yet I have ALL the symptoms.  I do have positive 24 hour histamine and prostaglandins and am working with both Allergy and Celiac Doc to figure out a protocol that will work to bring my mast cell symptoms under control.

 

For me, I don't see a need for a clinical diagnosis - IF I was successfully controlling my symptoms.

[IrishHeart]

My Doc --who has put me through enough testing and spares me anything further unless TOTALLY necessary just said this

"Obviously, you have HIT and some sort of mast cell dysregulation".... Does that count as a clinical DX? It does for me. I am done with testing at this point.

 

I just had the really fun follow up endo/colono with biopsies a few months ago.   whoohoo!

[Adalaide]

I haven't even brought up testing with my new doc. I suppose maybe I will at some point if I feel like I need to, but for now I don't see a point. If my neuro stuff doesn't pan out to a definitive conclusion I suppose I will need to pursue testing but until then I'm just rolling with treating.

[mamaw]

Is  there  a  specific  support  group  for MCAS????

[jebby]

Back from the allergist.  I'm not really sure what to think.  He is testing me for serum tryptase to rule out mastocytosis.  If that is positive, then he plans to do the urine test.  When I said that people with MCAS usually test withon normal range for the tryptase, his answer was basically "why do you need a diagnosis for MCAS if you're just going to treat it with antihistamines anyways?".  I kind of see his point, but was wondering what you all thought. Have all of you with it been clinically diagnosed and is there an advantage to obtaining that clinical diagnosis? 

Hi Shellie, In my case I thought it was important to have an answer for my bizarre multi-systemic symptoms, and since taking regular doses of antihistamines did not control my symptoms at all, I wanted to have other mast cell stabilizers prescribed (and covered by my insurance). I also wanted to be able to be 100% sure that I had the diagnosis of MCAS before I started to spread the word about it and tell my story to my physician and non-physician colleagues. Lastly, I wanted my allergist to see that yes, it is possible to have this "rare" diagnosis that seems not be be very rare at all! He has actually been very interested in my case since I was diagnosed, or at least he pretends to be when we run in to each other at work events.

However, I can see also see the other side of things too. If one figures out that they have a histamine overload, and on their own they are able to control symptoms, then there may be absolutely no point in undergoing expensive testing (unless they feel that they need a firm diagnosis, like I did). I am actually surprised that your allergist seemed so underwhelmed by it all, but perhaps it takes a lot to make an allergist excited. I did a one month of pediatric allergy rotation during my residency and it was pretty unexciting....

[jebby]

Is  there  a  specific  support  group  for MCAS????

There are a few Facebook closed groups for mast cell disorders. I am part of one called MCAD. The Low Histamine Chef, Yasmina, also has one called Histamine Intolerance. I am not aware of any other online support groups but am interested to know if anyone else knows of any.

[IrishHeart]

Is  there  a  specific  support  group  for MCAS????

 

 

I think we may be looking at it right here 

 

The Low Histamine Chef has good stuff!

[greenbeanie]

... perhaps it takes a lot to make an allergist excited. 

 

This made me chuckle...It definitely seems true of the allergists I've seen. I suppose if you're used to dealing with people in anaphylactic shock, anything less dramatic might seem boring.

 

I've been following this thread with great interest. I realized a few weeks ago that a sulfite intolerance has been making me miserable. My tongue swelled up during my gluten challenge last spring, then stayed swollen for months afterward (even when gluten free). This had happened on and off before, but it had never stayed swollen for so long. A CT scan and a dozen other tests failed to determine the cause, though it did interest my allergist enough to pull her colleague into the room and discuss me as a curiosity. None of us suspected a sulfite issue at first because I wasn't eating anything at all with preservatives. It turns out that the naturally-occurring sulfites in fresh foods are enough to set me off. Once I realized this, the swollen tongue was almost normal within three days!

[IrishHeart]

, though it did interest my allergist enough to pull her colleague into the room and discuss me as a curiosity.

 

 

I share your position as a "curiosity" amongst the medical pros....not sure if I feel special, weird,  or pissed off. 

 

[bartfull]

I have been avoiding this thread because I don't WANT this! It took years to shed my denial about celiac, even though deep down I knew I had it.

 

But I do have a lot of the symptoms of this.

I am German.

I still have some gastro symptoms.

I still have fatigue.

I have had wheezing all my life, especially during exercise.

I have bone pain.

I still have brain fog.

I have gotten chest pains when stressed or exercising for years.

I have had intermitent racing heart for years.

I am EXTREMELY sensitive to sunlight. (My friends have called me a vampire most of my life.)

 

I am allergic to bee stings and even SMELLING honey leaves me gasping for breath.

I swell up like a balloon from gnat bites, mosquito bites and other bugs.

I am allergic to asperin and Advil.

I haven't been able to drink wine for years.

Extreme hot or cold leaves me gasping for breath.

I can't breathe in the presence of most perfumes and avoid the laundry aisle in the grocery store. (Dryer sheets are the WORST!)

I have breathing trouble when I am stressed.

 

I thought it was all due to my asthma, but maybe my "asthma" is due to this?

 

But the food thing has me confused. I can't eat soy, spinach, or drink wine. Chocolate seems to bother me sometimes, but other times it's OK.

 

I have never had any problems with avocado, cheddar, dates, sausage, yogurt, vinegar, bananas, or eggs.

 

The rest of the foods on the list are things I haven't tried or don't eat anyway.

 

And corn is the very worst offender for me, even worse than gluten. I don't see that on the list. Maybe I DON'T have this?

 

I'm so confused!

[jebby]

Hi Bart,

Welcome to this MCAS thread! Your posting popped up while I was on this forum.

You really have a ton of the symptoms of MCAS. In my original post that IH linked to, one of the references is a recent German study showing the 17 percent rate in the general population.

Back when I was diagnosed last year I reacting to a lot of the foods, but not all of the foods. I thought I was reacting to corn for a while, but I was actually having mast cell reactions to processed corn that is sulfted, like corn starch. I tested that out by eating straight up corn on the cob a few times without symptoms. Corn starch, flour, etc. made me wheeze and get my other symptoms. I had skin prick allergy tests for all of the foods I was reacting to and they were all negative.

Have you found that you've had any improvement in your symptoms when taking an antihistamine? 

For some reason these mast cell issues really seem to travel hand in hand with celiac, and like others have stated earlier, may be playing a big role in why some of us are super sensitive. 

Jess

[bartfull]

I haven't taken antihistamines. I have so many reactions to drugs that I avoid them like the plague. The only drug I take is tylenol made at a compounding pharmacy.

 

I have no insurance so I haven't seen a doctor in years, except the one at the free clinic. And my diet is very limited because I seem to be intolerant to so many things, plus I live in the middle of nowhere and can't get decent produce. I stopped eating the bananas and avocados because most of the time they are rotten on the shelf. I have a hard time finding even sweet potatoes that are decent. I mostly eat meat, rice, cheese, and broccoli when I can get it. Eggs on the weekend. And All natural vanilla ice cream. That's about it. Every day. I am so sick of food!

[anti-soprano]

Hi Bart-

Just so you know, my tongue is a problem as well.  It doesn't get really, really swollen.  But it scallops around the edges and sometimes my speech is slightly affected.  I'm not sure if other people hear it or I am the only one because I know it's more difficult to get certain consonants out.  This happened to me first after my reaction to Bactrim- or at least that was the first time I observed it.  It lingered for what seemed like ever.  On again, off again.  I went to every doctor I knew and finally to the dentist who said it was likely caused by tension. After that I relaxed a bit and ignored it.  But it was there every so often.  I know now that as my other symptoms get worse (hives, itching, numbness in my face), so does my tongue.

 

I thought I lived in the middle of nowhere!  I will stop complaining now.  How far away is the nearest decent grocery store?  I'm not suggesting you go there, just curious!  

[bartfull]

Nearest decent grocery store is over 60 miles so it's about 125 mile round trip. Not impossible, but certainly not something I want to do every week on my only day off. During the winter I take Sundays off so I could go there, but during the summer I work seven days a week. Of course people have gardens in the summer and keep me supplied with yellow squash, so that's nice.

 

I'm still not sure if I have this. I mean, yeah, I get chest pains, but it's only three or four times a year, usually when it's really hot.  Back when I had insurance I ended up in the emergency room a couple of times and they assured me I was not having a heart attack. They suggested I see a cardiologist, but of course I never did. The racing heart used to be really bad. It was pretty much over 120 beats a minute ALL the time. But now it only happens once in a while.

 

The wheezing has been with me all my life, as well as the sun sensitivity. The fatigue too. I remember once, not too long ago, telling a friend who has an excess of energy that I have NEVER had energy, and it was only when I said this that I realized it was true. I have pretty much felt lousy all my life.

 

When I was three years old I had a bad case of tonsilitis. I know it sounds crazy, but I remember waiting to feel good again, and it seems I never did. From that point on I have been tired and fatigued. Seriously. I even had doctor's notes excusing me from strenuous exercise in school. I just couldn't run like the other kids. I'd get wheezed up, and sometimes felt like I was going to black out. 

 

At this point, I'm not looking for miracles. I've never really felt good and I expect it'll be that way until I die. Going gluten-free and corn-free has help my psoriasis. And for a short while my digestive symptoms cleared up and I had energy. But it only lasted a few weeks. The psoriasis is still gone (except on my feet. But at least my hands are clear now.)

 

And it looks like if this is the cause of my feeling lousy, there's really not much I can do about it. I guess I can avoid cheddar and eggs and dates. Those are the only "bad" foods I've been eating on a regular basis. And I guess I can try to find an antihistamine that isn't full of corn. (IS there such a thing?)

 

Or I can chuck it all and go to McDonald's. (Just kidding!)