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Non Mast Cell Disorders, such as Ehlers-Danlos, POTS, MCS-CF, etc. >> Non Mast Cell Disorders, such as Ehlers-Danlos, POTS, MCS-CF, etc. >> Histamine Intolerance = Does it mean failure in catabolism in histamine metabolism? http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1358063213 Message started by Doozlygirl on 01/12/13 at 19:46:52 |
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Title: Histamine Intolerance = Does it mean failure in catabolism in histamine metabolism? Post by Doozlygirl on 01/12/13 at 19:46:52 Check out the slides on histamine. http://www.allergynutrition.com/resources/seminars/Pivotal%20Role%20of%20Histamine%20in%20the%20Symptoms%20of%20Food%20Intolerance/PowerPoint%20Slides%20%2833%29.pdf |
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Title: Re: Histamine Intolerance = failure in catabolism in histamine metabolism Post by Riverwn on 01/12/13 at 23:53:45 This is misleading when it comes to our disease(s). This person is a dietician treating people with food allergies. That is not what we deal with. “histamine intolerance” is defined by this dietician, as people who have a low threshold of histamine capable breakdown compared to people with no histamine problem. All histamine problems are seen and treated from this perspective. That isnt what we are dealing with here. Our own experts define and handle mast cell diseases as a problem with mast cells themselves, which are abnormal in either amount, shape and in behavior. They release excess histamine when exposed to certain triggers, which act like allergens, but are not. The excess of histamine release is caused by this exposure, and occurs at unpredictable times which is part of the reason that histamine level with mast cell patients can be so dangerous--that unpredictability of reaction and level of that reaction. Treating mast cell patients by targeting diet is only a small part of the picture in treating mast cell disease and can only be in what to avoid by each individual patient themselves--and cannot prevent our disease merely by avoidance (but will certainly help some levels of histamine). Help, not cure. There is NO cure for our disease at this time. This is an alert for members here that some dieticians are like snake oil peddlers and can put your health at risk with attempts to sell their books and services. I am not saying this particular person is one--I AM saying beware of people offering easy cures--or for that matter ANY cure at all--there arent any at this time. Be safe, be aware, Ramona |
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Title: Re: Histamine Intolerance = failure in catabolism in histamine metabolism Post by Starflower on 01/13/13 at 02:15:51 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. |
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Title: Re: Histamine Intolerance = failure in catabolism in histamine metabolism Post by redbird on 01/13/13 at 04:51:39 Ramona you are so right... currently there is no cure for our disease..hopefully sooner than later... so having said that...our goal...my opinion only....we should strive to have a better quality of life....and sometimes quality is so bad that we are willing to listen to those who ...cannot cure us... redbird |
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Title: Re: Histamine Intolerance = failure in catabolism in histamine metabolism Post by Riverwn on 01/13/13 at 05:14:00 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 |
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Title: Re: Histamine Intolerance = failure in catabolism in histamine metabolism Post by Joan on 01/13/13 at 07:18:49 Revised Post Lyn, I have a few thoughts about the link posted.... I'm not being critical of what you're researching or even the person who wrote this, but I do think people reading it would benefit from more information, which she likely filled in when she gave the talk that went with this presentation. In case people don't know what kind of information this is, it's a Power Point presentation by a nutritionist who has a strong interest in the way people's bodies react to foods and who lectures on the subject. Because it's such a general outline of a talk she gives (or gave), it could cause incorrect conclusions or confusion. There are other sources of this type of information that are more complete, so if something seems to fit someone's symptoms or issues, it might be wise to do additional reading on those topics of interest. Because it's a Power Point outline, it doesn't include references to any sources from which the information comes. That's not to say any of it isn't true, but we can't check that out if sources aren't cited. I'm not saying the author did anything improper here, as this was her visual aid for her presentation. As a matter of full disclosure, this is from a for-profit website by a person who has a business doing consultations and selling publications. I'm not implying that her information lacks credibility because she makes a living doing this. It doesn't appear to have been written or intended for people with mast cell disorders, although it might have information that would be helpful. The author may be very credible and knowledgeable about her field, but this particular presentation is too incomplete to be posted without a lot of added explanation. It's hard to tell what is from proven research and what are her own personal theories without hearing her talk, too. |
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Title: Re: Histamine Intolerance = failure in catabolism in histamine metabolism Post by Lisa on 01/13/13 at 08:25:17 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 |
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Title: Re: Histamine Intolerance = failure in catabolism in histamine metabolism Post by DeborahW, Founder on 01/13/13 at 09:24:40 There are some great thoughts here in this discussion. Please note that Doozlygirl merely listed the information. She didn't say that in her opinion it was correct or incorrect. That judgement call would be a result of discussion and research on this topic. The beauty of the forum is that we can share things and delve into them together as we try to figure them out and see what we can learn about them. Thus I thank everyone responding here, because that is exactly what you are doing. :) |
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Title: Re: Histamine Intolerance = Does it mean failure in catabolism in histamine metabolism? Post by Joan on 01/13/13 at 10:49:51 I revised my prior post because I didn't think I expressed my concerns very well. |
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Title: Re: Histamine Intolerance = Does it mean failure in catabolism in histamine metabolism? Post by ruth on 01/13/13 at 11:30:00 Thank you ladies for all the perspectives the post has elicited. I had a slightly different reaction to it so I am glad to see some balance being found. The first question this raised for me (the responses, not the initial post) is whether this forum is intended to be only for those who already have a mast cell disorder diagnosis, as some comments are so specifically about this information not applying to US, that someone without a confirmed diagnosis might feel somewhat excluded, and that exploring the alternative explanations for their symptoms is not an option here. As Heather said, perhaps it belongs in a different section, but does it not belong here at all? Correct diagnosis is really important and sometimes to do that you need to be able to consider the alternatives and be clear about the distinctions. The other reaction I had is that we all come from diverse educational and professional backgrounds. Not everyone is able to read and understand journal articles from a medical or scientific publication. Having a document like this is sometimes a useful starting point for understanding, and may then make the more technical explanations more accessible. I agree it is extremely limited, and not the ideal format for learning without the explanation that accompanied it. 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. And then there is the issue of credibility of the author. I have read some of her work, she has a phd in immunology in addition to her dietetic qualifications, her knowledge of food intolerances and allergies and her explanations I found extremely comprehensive with a solid scientific base, and very helpful. Limited for someone with a mast cell disorder, but of use nonetheless, purely for the purpose of understanding dietary factors. Ruth |
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Title: Re: Histamine Intolerance = Does it mean failure in catabolism in histamine metabolism? Post by Lisa on 01/13/13 at 13:07:26 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 |
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Title: Re: Histamine Intolerance = Does it mean failure in catabolism in histamine metabolism? Post by Doozlygirl on 01/13/13 at 15:51:45 Another great resource on histamine, which provides a fantastic easy to understand description of many aspects of histamine effects on the body provided with credible references. http://www.iainfoctr.com/articles/histamine.php Lyn Found another resource, but this one has a bit more medicalese. http://www.ehrs.org.uk/schwelberger.pdf |
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Title: Re: Histamine Intolerance = Does it mean failure in catabolism in histamine metabolism? Post by Doozlygirl on 01/13/13 at 17:51:54 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 |
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Title: Re: Histamine Intolerance = Does it mean failure in catabolism in histamine metabolism? Post by Joan on 01/13/13 at 21:25:01 Deborah's notes: I have highlighted in Joan's post some very valid points. Please note my highlights and expect forum guideline changes to occur as a result of the continual misdirection that I keep finding on the forum. Joan expresses some of my thoughts in the highlighted areas of her post. There certainly isn't animosity toward the powerpoint slideshow on my part, and there was no tone or attitude intended in my post. Yes, Dr. Joneja has credentials, and I felt they should have been posted along with the link to the slideshow. I do think the IA Info Center article is a better teaching tool for educating people about histamine than the slideshow. That isn't a slam against Dr. Joneja, as I'm sure she didn't intend for the Power Point slideshow to stand alone. Perhaps we need a separate section for discussions of related immunological research and/or education and/or histamine metabolism. In my opinion the subject matter doesn't really fit in the category of "Mast Cell Disorder Discussion." It could possibly fit under "Specific Mast Cell Conditions and Those that Mimic Them," but it's not exactly that either. People do need to be aware of all the possible problems that could be causing their symptoms. They also need to know that it's not an "either-or" situation. Conditions can and do co-exist. Sometimes they're related, but sometimes not. I have both SM and IgE allergies. But, is the general mast cell disorder discussion the proper place for delving into IgE allergies? Only to the point where they affect mast cell disorders. Because they can be mistaken for a mast cell disorder, that topic would be best discussed in the category about conditions that mimic mast cell disorders and how to rule them in or out. Not everyone is able to determine whether what they read or post is up to date and accurate based on medical research. There is so much misinformation on the internet, in newspapers and other media. For example, newspaper articles and blogs that report on or re-phrase articles published in medical journals often don't represent the findings accurately. People need to know if something posted isn't from a primary source or if it's from a website that publishes "research" in order to sell supplements the company manufactures or if the information is someone's private theory, not yet proven. I'm not saying at all that you are doing any of those things, but a full disclosure of what is posted will help people avoid misinformation and confusion. Doing so will only increase the credibility of all posts. Obviously, this is only my own opinion, and Deborah will be the one to decide which topics are appropriate for the forum and where they should be discussed. Lyn, I have a lot of respect for how you're trying to help yourself feel better by studying and learning about what's happening in your body. I also appreciate how you're trying to help others with what you're learning. If I said something that's offended you, I didn't mean to and apologize. |
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Title: Re: Histamine Intolerance = Does it mean failure in catabolism in histamine metabolism? Post by MarciaB on 01/14/13 at 00:41:13 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 |
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Title: Re: Histamine Intolerance = failure in catabolism in histamine metabolism Post by Doozlygirl on 01/14/13 at 01:00:04 Starflower wrote on 01/13/13 at 02:15:51:
Heather and others, Thanks for reposting this article on Histamine and Histamine Intolerance, Heather. I read it about a year ago and you prompted me to reread it. I now have a deaper understanding of many of the concepts in the piece so am reading it differently now. As stated in the abstract and introduction, histamine intolerance results from a disequilibrium of accumulated histamine and the capacity for histamine degradation. This to me points to problems in histamine catabolism or too much histamine as a reason for histamine intolerance. Check out page 1187, where it restates that histamine intolerance can develop through both increased availability of histamine and impaired histamine degradation. It goes on to list multiple underlying conditions for increased availability may be endogenous histamine overproduction caused by allergies, mastocytosis, bacterias, GI bleeding, or increased exogenous ingestion of histidine or histamine by food or alcohol. I take this as meaning that these authors in mid 2006 believed that mastocytosis can cause histamine intolerance. This is before MCAS, so no suprise here that MCAS is not listed. Check out table 1, which lists the various histamine levels that were found to trigger various clinical effects. At 3-5 ng/ml, anaphylaxis is triggered, with cardiovascular consequences of decreased arterial pressure at 6-8 ng/ml and bronchospasm at 7-12 ng/ml. I am overwhelmed by reading the Figure 1, which concisely summarizes histamine mediated symptoms, many which I have faced, and the unique constellation of symptoms that counted as one criteria for my diagnosis of MCAS by a top mast cell specialist. While several places throughout the article attributes these symptoms to healthy individuals transciently, as well as those with "histamine intolerance", how can this not be considered part of MCAS? Just as some with previous diagnoses of IA and IC are now being diagnosed with MCAS, I wonder how many have been diagnosed with Histamine Intolerance. I've emet several from the UK who carry this last diagnosis and are seeking a MCAS diagnosis. Interestingly, DAO is a tested in the UK much more readily than here, and DAO supplementation was availaable in the UK long before here. The way I understand, MCAS is a syndrome, or a collection of symptoms, and is NOT defined as a disease. Histamine Intolerance is a state of being or a symptom in itself. I take it that histamine intolerance is a symptom of a mast cell disorder, just like flushing can be a symptom/sign of a mast cell disorder. Check out Figure 3. Other than paying attention to DAO inhibiting medications or histamine liberating medications and DAO supplemention, it pretty much fits a typical MCAS diagnostic pathway and treatment plan for MCAS. Considering this article comes from 2 Dermatologists from Germany in mid 2006, I feel this information, as well as the powerpoint I originally posted connects some big dots for me. Maybe others will learn from it as well. Lyn |
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Title: Re: Histamine Intolerance = Does it mean failure in catabolism in histamine metabolism? Post by DeborahW, Founder on 01/14/13 at 01:50:16 This Topic was moved here from General Mast Cell Disorder Discussion by DeborahW, Founder. |
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Title: Re: Histamine Intolerance = failure in catabolism in histamine metabolism Post by Lisa on 01/14/13 at 03:37:22 Doozlygirl wrote on 01/14/13 at 01:00:04:
Hey everybody, This is very educational and it´s serving as a good learning process! Thanks!!! I love to learn and I´m enjoying this discussion we all are having for we need to understand more about the processes and mechanisms and what is going on with us all. I want to add just a tad to it and I think that perhaps this will help. One of the things that jumped out at me is that of the fact that this article above was published in 2006 - in the midst of the strongest time period when the major masto authorities were stauchly denying the existance of any kind of a MC disorder except systemic mastocytosis. Any doctor who would bring up the subject of MC activation was quickly shot down in their tracks!! The major proponents of SM being the ONLY form of a mast cell disorder were German, being Dr. Horny and Valent. Without a doubt they have had a major influence on the other doctors within their country since they are high up there. They absolutely refused to accept MC activation and are still slowly coming around to this. The major proponents behind MCA and MCAS are Dr. Castells, Dr. Escribano, Dr. Schwartz and Dr. Molderings (the only rebel German of the bunch!) It took the work of Dr. Molderings, Dr. Escribano and Dr. Akin to finally break open the closed minds of these doctors and unfortunately this has influenced a great deal of work that was being published before that time and up to 2010 when the WHO Consensus meeting approved MCAS and has since refined its meeting. I think that it might be very possible that any kind of report coming out regarding histamine intolerance would have to be reconsidered as of 2010 for if you consider the word intolerance, it really makes no sense in the true sense of the word and perhaps this is what is bugging all of us. I can tolerate histamine quite well, or lets say, nobody´s body, even a healthy person, is going to tolerate histamine directly injected under their skin - they are going to react, period. Histamine creates reactions even in healthy people - that´s it´s job. So, yes, in that sense of the word there´s an intolerance, but if my body is metabolizing it properly, then I´m not intolerant to it in the classic sense, like a intolerance to peanuts or shrimp per se. My body is metabolizing my histamines as well as it can only I´m producing too much so it´s too much for my system. So, if you use the word intolerance in the classic form, no, I don´t have an intolerance, but if you use it in the way they are using it, then I guess I would have to say Yes, I do have an intolerance. Lisa |
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Title: Re: Histamine Intolerance = Does it mean failure in catabolism in histamine metabolism? Post by Lisa on 01/14/13 at 03:42:12 Oops, one more thought..... So I think that if we consider a histamine intolerance and we are talking about a disorder which creates problems with the metabolization of it, or some kind of defect driving the intolerance then we are not talking about a mast cell disorder. Yet, if we are going by what this article is saying that independant as to the source of the histamine and the mechanism behind it, any overabundance and thus difficulty with histamine creating reactions is thus the definition of an intolerance to histamine, then I guess then yes, we have to accept this as part of the mast cell disorder issues. You see, I think this is where our difficulties lie for I know that doctors will use terminology in ways that patients would not. In not understanding how the doctors are using it, we are left to dicker amongst ourselves as to what the terminology is meaning and boy is that running around in circles or what?!!! The end result, it then ends up being a discussion which has no usefulness at all except to get everybody on edge! :-/ Lisa |
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Title: Re: Histamine Intolerance = Does it mean failure in catabolism in histamine metabolism? Post by Joan on 01/14/13 at 12:58:52 That is, until, with an open mind, we try to see it in other ways. Then sometimes, we find that there is logical place for the discussion and information to fit in with what we already know! |
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