Check out the slides on histamine.  

http://www.allergynutrition.com/resources/seminars/Pivotal%20Role%20of%20Histami...

These slides are not a very high-quality resource for understanding histamine intolerance.  Here's a better one (from a peer-reviewed, academic journal):

http://ajcn.nutrition.org/content/85/5/1185.short

One thing I find particularly troubling about the slides is the case studies.  Subject #1 was having problems with urticaria from taking a shower.  The slides call this "pressure urticaria," but it also could have been from the heat and/or the water.  Anyway... somehow, she was magically cured by following a low-histamine diet.  Thinking logically, why would that work??  Was she eating while taking a shower?

This thread belongs in the "Non Mast Cell Disorders" category.  While I do think histamine intolerance is real and something each one of us should consider as an alternative or co-morbid condition... it's not a mast cell disorder.

Heather

ps - Excellent advice, Ramona  ICUS has a similar warning on its website.

Thank you Heather

Red, that is exactly what I fear--I know how bad you can feel and sometimes be near the edge of accepting anything that promises relief--but the truth would give us an empty promise only. Thats one huge reason that this board is so important. When we feel weak, others here stand for us, support us. We protect each other always!
hugs
Ramona

So, let´s sum this up so we can all get on the same page......

There are some people who have a histamine intolerance.  

There are also others who have difficulty metabolizing histamine.  

However, when we are dealing with a Mast Cell Disorder, this is a defect upon the mast cell itself which causes it to release TOO MUCH histamine amongst other mediators.    

This is not that the body is over producing it, but that the body is releasing too much of it.  This is a totally different mechanism from the other two above.  An MCD patient tolerates their histamine and they also metabolize it properly.  There is nothing wrong with those functions and mechanisms.  Instead, their mast cells have a dysfunction and this dysfunction means that their mast cells are not working properly causing an irregular release of mediators which include histamine.   Yet, it´s not only histamine which is the problem here for there are other mediators which cause some impressive reactions which the patient in their ignorance may blame totally on histamine release.  

This is why a MC disorder is so very difficult to pin down for there are numerous symptoms being caused by numerous mediators and even though histamine is one of the mediators which is normally found in abundance it is not the only one!!!  The symptoms which a patient and even doctor could wish to totally blame on histamine release in reality is an OVERLAPPING of symptoms.   Histamine is a very strong neurotransmittor and the mast cell released a great many other neurotransmittors and if you were to research the other MC mediators you will find that they have overlapping jobs of vasodilation and vasoconstriction and broncodialation and many other properties and they all overlap.  And if we consider the basophils they also are called into action by the MC mediators and they could be releasing their granules based upon the MCs activation.   It´s a huge, complex, chemical chain reaction which malfunctioning MCs create which is a completely different mechanism than a simple histamine intolerance or a histamine metabolation defect infers.  

Let us not get lost with the needle in the haystack for the issue here isn´t the needle, but the haystack itself!


Lisa

I revised my prior post because I didn't think I expressed my concerns very well.

Point well made, Ruth and thank you so much for those wonderful comments.  Yes, this is a forum which is based upon patients who are looking for a diagnosis or who have been diagnosed with a MC disorder.  It's not intended for only those who have already gotten a diagnosis, not in the least.   We need to keep our minds open in considering other options, and yes, we also need to be careful for there is a lot of information on the web and it's certainly a jungle out there.  

If you don't mind I do want to add two things to this.   First is that we do indeed need to be careful as to what we are reading and studying.   Let's take this power point publication, yes, the doctor is a PhD and an immunologist to boot.  Who are we, as patients, to judge a doctor of this level?  Yet, what must be kept in mind, however, is that although the doctor is a PhD in immunology, this doctor may not be fully appreciating the malfunctioning mast cell and how it would be involved.  I know that this sounds rather courageous of me to say, but this is something Dr. Castells has said to me "Few doctors really understand mast cells".  I'm not saying that this PhD doctor isn't understanding mast cells and I'm not judging her capacity as a doctor, so please don't misunderstand me.  What I'm saying is that she's focusing upon healthy, normal mast cells and their roles in allergy and this is not what masto patients are undergoing.  Yes, a good slide show, but again she is coming from a different viewpoint and the mechanisms which masto patients undergo are totally different.  We must not forget this.    When you have an IgE response to allergy, the mast cell rather explodes releasing all of its mediators, I believe.  Whereas when you have a dysfunctional mast cell which has been triggered it does a partical, selective mediator release which is why the symptoms show differently and then you must include each patient's own genetic makeup to help mix things up even more.

My second point is that we, as patients, must be very cautious before jumping to conclusions about our cases based upon what we are reading, be it medical articles, case reports, slide shows, or condensed information.  It's one thing to learn about how the mecanisms function, like in this slide show.  It's a good show for teaching about IgE allergies and that's valid learning information, but to take this information and apply it directly to your case is taking things too far.   As Ruth said, " If we really want to understand and advocate for our own health issues we need to do the hard work of learning and scrutinising what we read, but a more simplistic explanation such as this might be a starting point for some who otherwise wouldn't get to the more comprehensive documents."  This is extremely important!   Yes, we need to learn, but we must be cautious for not everything applies to us and our particular problems.  Learn, but learn and have it balanced by other information and doctor support.

Thanks Ruth, great points!!!


Lisa

Prior to the current mast cell movement, there were various theories and understanding of what happens biochemically in the body during anaphylaxis.  Current understanding of IgE Food allergies, food intolerances, histamine intolerance, and others overlap with mast cell understanding to date.  

I have been diagnosed with MCAS by a top mast cell specialist and do not question the existance of MCAS, but am trying to connect the dots by studying biochemistry to explain what is happening in my own body, and sort out my own triggers.  I am looking to existing publications, powerpoints, articles, blogs, newsletters, etc to fill in the missing blanks.  

No matter where the histamine comes from, it needs to be catabolized (broken down).  Ineffective breakdown pathways are implicated in poor histamine metabolism, with DAO and HNMT as two necessary enzymes to break down histamine.  DAO breaks down histamine in cells and HNMT within the cells.  This is important to understand, since the HNMT pathway leads to N MethylHistamine, a key mediator often tested to confirm MCAS.  Also some of us are more sensitive to exogenous histamine than others, and may play a part in why some of us do better on low histamine diets and others don't.  Considering some of us tolerate certain meds better than others, one reason could be that certain meds lower DAO production, raise histamine levels, or trigger the release of histamine.  

I have food allergies, food intolerances, anaphylaxis and less severe mast cell reactions, which provoke different reactions in me.  Sorting all these reactions out, I am better able to identify the actual triggers.  

Dr Janice Vickerstaffr Joneja, is a researcher, educator, author, and clinical counsellor with thirty years of experience in the area of biochemical and immunological reactions involved in food allergy and intolerance. She holds a Ph.D. in medical microbiology and immunology, and has been a member of the academic faculty of the University of British Columbia and other universities. Currently, she is an adjunct professor in the Faculty of Agricultural Sciences at the University of British Columbia, and an Honorary Research Fellow in the School of Biosciences at the University of Birmingham in England. Dr. Joneja is also a dietitian (RD), registered in the College of Dietitians of British Columbia, a member of Dietitians of Canada, and the American Dietetic Association. For 12 years she was head of the Allergy Nutrition Program at the Vancouver Hospital and Health Sciences Centre. She is the author of five books and a dietetic practice manual on food allergy, and her work has been published in peer-reviewed scientific and medical journals, as well as in popular magazines. Dr. Joneja is a respected lecturer at universities, colleges and hospitals internationally, and regularly appears on television and radio call-in shows as an expert in her field.
http://www.allergynutrition.com/pages/p1/about_dr_joneja.php

While the powerpoint I shared provides a basic description of the role of histamine, I can't figure out why there is so much animosity towards a simple powerpoint slideshow.  As with every resource, it is wise to weigh many factors: the date of the publication, the author, the potential confilct of interest, the references, and corraborating theories.  The author is considered a credible resource, has authored books on the topic, and offers pieces to the puzzle for me and possibly others.   I found this resource on another mast cell forum and shared it here, since it is a good intro into histamine metabolism, a difficult and complex topic.  

Lyn

Thanks for the info. I'm a newbie but I'm trying to learn as much as I can from various sources.  

I initially responded so well to wal-zyr and then it stopped.  My pain and swelling returned and oi is now intermittent so I'm interested in learning more about how to stop my symptoms (from possible / probable mast cell disorder) not just try to control them with symptom relieving meds.

Fwiw, I have a serious kidney / ureter infection and I'm not sure how long I've had it.  This infection could explain why wal-zyr stopped helping.

Tc .. Marcia