Hello!

I´d like to introduce myself and tell my story, which started long ago, namely when I was 9 years old (I´m now 31). I have to warn you - neither am I a good storyteller, nor is English my mother tongue. Please bear with me

I had suffered from insomnia and anxiety even before the age of 9, but only then did I start to suffer from fatigue. After lunch, I always had to sleep in the afternoon, this is how it started.

From 12 on, I started to feel a general malaise in extreme summer heat. This is something that progressed - in the summer months I am out of order.

Hayfever started when I was 15, but nothing too serious, Anti-Hs helped.

I was sometimes flushing after eating, and when being excited or scratching my skin, I had red blotches for some 20 minutes. People used to call my attention to these hives on my neck, but I shrugged it off, cause it didnt itch & I knew they would disappear in a couple of minutes.

The fatigue & insomnia gradually worsened, but it was all explained with a traumatic childhood.

Then, 4-5 years ago, in addition to my fatigue, I started to have days with severe brainfog, I felt completely hungover without having drunk any alcohol. Doctors blamed it on depression. I knew that couldnt be true, cause yes! depression can make you feel completely drained, but it cant make you feel intoxicated, and this is how I felt on some days.

Same happened when I got a combined vaccine, only that I felt like that for whole 3 weeks... I felt so hungover I could barely manage to get through the day, but it got gradually better, thank god.

Then, finally, 3 years ago, my histamine tolerance got diagnosed, that explained it all! When I stood away from high-histamine foods, I didnt have that hangover anymore, I was so happy. I had found a way to almost feel like a normal person after such a long time. I was still fatigued, to a lesser degree, though & still couldnt take the summer heat, but that was "normal" for me.

Slowly, very slowly I started to get more & more sensitive to histamine foods, I had to cut out more & more. Alcohol is now off-limits completely, some supplements, fermented, and all histamine foods have to be avoided much more strictly than before, now also sugar, dairy and gluten started to lead to reactions, which became worse. Before, it was a slight hangover & fatigue the next day (no longer). Now it is all that, only more severe and triggered more easily plus neck pain, permanent urge to void, brain fog, severe anxiety, depression, heart arrhythmia, tight chest/difficulties breathing, that can lead up to 4 days now.

Some non-food triggers appeared the this fall: passive smoke, low oxygen, hunger (this is an extreme trigger for me) / hypoglycemia, my menstruation, hairdye, and above all weather changes affect me for days. One weather change can lead to migraine-like histamine hangovers for days. With the weather changing every 2-3 here I am mostly in a haze


I´ve been having diarrhea for more than 10 years, but that, too got a bit out of control lately... constant nausea came in addition in december 2012 (that has lessened), extreme tense aching neck muscles up to a point that made sitting impossible (slightly better again), lose "popping" joints all over my body (which cannot be explained by the scoliosis that just got diagnosed). Due to my restricted diet and diarrhea I lost close to 2 stones in 4 months... I am not having any menstruation anymore for 2 months.


I had to stop working, cause I didnt manage to push through the exhaustion, brain fog & nausea with shopping and preparing my special-food each morning, which I am heavily dependent on.

I am hardly meeting up with friends anymore, cause I have to cancel so many appointments, never knowing if my health will fail on me or not.

So, could it be that this is not histamine intolerance anymore but rather a strange case of mcas? I´ve never had anaphylaxis... I had histamine induced tachycardia, but that´s that. I don´t have any cutaneous signs apart from the flushing, only once did I have urticaria after having smoked salmon... But I wont eat such things anymore, I am not suicidal.
Hangover, brain fog, breathing problems, fatigue and feeling poisened are my main symptoms, but I dont have any immediate reactions. I get them 12 hours after ingesting food... only non-food triggers lead to immediate reactions.

When I read about cases of "real" masto or sever mcas, then I see that what I have is sometimes ridiculous in contrast. Yet, I cannot function anymore. Travelling or working are completely impossible...

I am grateful for each response!

Kisses, Pinkmink

Hi Pink and welcome to the forum!  I hope we can help you!


I have to say that Lynda did a good job of covering the bases and raised the very first question on my mind too - who "diagnosed" you as having histamine intolerance and HOW?    Histamine intolerance is a valid daignosis and you can get that by showing exams proving that you have an MAO difficiency, or is it DAO I believe (don´t quote me cause it´s been a while since I´ve had to study this, but I do know that there are tests which prove that you  have a deficiency in breaking histamines down.)  Anyway, this is VERY, VERY different from a MC disorder.   A histamine intollerance is very simple really and only means that your body gets an overload of histamine due to it´s inability to break it down and get rid of it.   In other words, your sink is stopped up, period.  By being on anti-histamines and a low-histamine diet you deal with your problem and go on your merry way.  

This is entirely untrue of a mast cell disorder.   Our MCs are broken and dysfunctional and because of this there is a chronic dumping of MC mediators into our bodies.  This means that there is a whole lot MORE going on than just histamines and there are a ton more consequences and damage and symptoms as the result of this.  Histamine is our major contender for mediators being dumped but there are a great many other mediators and they each have different functions and affect different parts of the body.   This would explain your horrendous fatigue and pain and many other symptoms which fall outside of just a mere histamine intollerance.   Also, if you have a histamine intollerance it seems to follow that once you hit a certain limit, anaphylaxis would indeed be a part of this, but this is not always the case with MCAS or a MC disorder.  Why?  Because of genetics and the fact that more than just one mediator is being released and since MCs are selective in their releasing and also talk with other cells, they may not be triggered to release the right combo of mediators which would put you into anaphylaxais, which is why we masto patients differ between ourselves so much.  

This is what makes me think that whoever diagnosed you does not understand masto and is clueless how to diagnose an MCAS patient.  But in order to really diagnose a histamine intollerance you have to know masto well enough to consider it and rule it out!  There´s just too much competition and without proper testing having a doctor "diagnose" you purely on your symptoms is just plain neglegence and fool hardy!

Pink, I live in Brazil and I´ve spoken with bunches of patients around the world and know several of the researchers in Europe and other countries.  Let me know where you are and I can see if I can find a doctor where you are.   If you are here in Latin America I can help you even more because we are finally gaining our own reference center and I am working with these doctors to help put it on its feet.   I can help you find some doctors perhaps who can take a good look at your constellation of symptoms and who knows, finally find you a true diagnosis and that of true treatment.    

Let me know, and I´ll see what I can do to help you.   Let us know what tests you have undergone and what treatment you are on now and where you are and let´s see how we can help you here!!

Lisa

Hi pinkmink,

I just had a thought.  A lot of us can react to dyes and fillers in medications and foods.  Have you tried different antihistimines?  Maybe another one would be worth a try. I have reactions to quite a few of the regular antihistimes.

Do you have compounding pharmacies where you live?  They make medications from scratch ( by hand).  Then you just get the drug itself and not all the "junk" that is put into them.  That way you can tell if it is the fillers or the medication itself.

The other thing is that sometimes our bodies are so reactive that we can have problems just starting or trying a new medication.  Could you start with a very small amount and then increase it if you don't react to it? I put a tiny bit inside my cheek when I try something new...that way it doesn't travel through my whole body.

Remember,  if you are going to try anything just make ONE change at a time ok?  You could at least check with you doctor to see what he thinks too.

I hope this helps.

Hugs to you,   Lynda

Bad luck living in Vienna.
I had some very bad experience with collegues of Valent who sent me away asserting that a tryptase level of 15 does not qualify as a hematologic disorder...
I got my tryptase tested at www.faz.at. They also needed some convincing to do so but there was a younger female doctor who knew some about MCAS and filled a questionary with my symptoms. I go there every half year to check my tryptase level.
There are a handful of possible mutations which influence how mast cells misbehave and which symptoms one can get.
Unluckily the only medicine effectifly blocking that activating mechanisms are new and expensive. Some people in Germany with MCAS benefit from treatment with Imatinib. Masitinib may be available in the end of this year worldwide.

I first also thought I may have low HNMT but the genetic test (340€) was negative and my elevated tryptase level shows that I got too many mast cells and my reaction to typical triggers also shows that they are easily triggerd which clearly indicates I got MCAS. Because of the bad influence of Dr. Valent MCAS is not accepted in Austria and I also was first sent to the psychiatrists which just got me on the wrong path and cost me time. In the end I found out on my own what was wrong.

My current medication is 2xAerius, 2xZaditen, 2xSingulair, 2xFoster, 2xNasonex, 3xVitamine C 500mg and Vitamine D3 which helps just a little.

A very accurate list of food I cannot tolerate is at: http://www.histaminintoleranz.ch/download/SIGHI-Merkblatt_histaminarmeErnaehrung...

Some compressed Info about MCAS ist at http://www.histaminintoleranz.ch/histaminose_mastzellaktivitaetssyndrom.html
For more Info I look at http://www.ncbi.nlm.nih.gov/pubmed Sometimes I also can get nonfree papers from friends.

Another forum (in german) is http://www.mastozytose.de/forum/

All Info about the HNMT Test is here http://www.histaminintoleranz.ch/diagnose_gentests.html
There is a lot of discussion about it at: http://www.libase.de/wbb/index.php?page=Board&boardID=124

So interesting thank you both.

I have been diagnosed with MCAD but was initially diagnosed with histamine intolerance. I had v low DAO. Out of interest my doc recently tested my DAO and it is now high!

So it is not that.

I have symptoms just like yours pinkmink that go on and are not instantaneous.

I also had low DAO which got normal after some weeks of histamine free diet.

Mast cell mediators can have very different effects on each individium. How much and which mediators are produced and released is also different in everbody and how we react do these is too. I also was very sure I had the HNMT genetic defect, before I discovered it is MCAS. A delayed response to food can indicate that mutated, easily triggerd mast cells are accumulated in your large intestine.

I also had constant diarrhea for two years but when I changed my diet and took Aerius und Ketotifen it got much better. Unluckily my muscle pain, fatigue, headache and sleep problems did not get much better.
After being triggered my chronic symptoms get worse, and often after one, sometimes after two or three days of rest and strict diet reach my "normal" level again.

I also am unemployed and unable to work since two years and if there is no change in my health condition soon I have to apply for disability pension. I may have to go to court to deliver an expert opinion from german doctors. Im afraid of that step because it means a lot of paperwork and insecurity.

That means there is nothing at all that helps the fatigue and the feeling of being hung over? To be honest, this bothers me so much more than any diarrhea ever could. Given I ever receive diagnosis, I am unsure wether I should take medication at all then. I wouldnt want to load myself up with lifelong medicaton (which will have one or the other long term effect), if only some minor symptoms can be managed by it...

Yeah, I am unemployed, but since I am "healthy" I will be forced by the employment agency to work 40 hours a week, I was told some days ago. This is absolutely impossible. I could work 10-15 hours/week, not even that is easy, but manageable, everything beyond that destroys me.  
It often feels to me that all I can do is drop dead at work, that is my only escape.

I know that no doctor on earth would let me go on disability. All I can get is strong neuroleptics etc because "it´s all in my head" (my histamine reactions to hunger, the anxiety when flaring etc).

If disability is doable for you, Spartaco, I would do it. It will be tough to get there, but at least you have some expert opinions on your side.

Sorry for my negative comments, I´m in a very bad mood right now. Ate 60 grams of fish 4 days ago, but I am still feeling like shit. Fish & the current weather changes are killing me.

PS: Are you guys on some facebook groups? I´m in an English and a Germand one right now... they are helpful!