Update 2016: Histamine issues are only a piece of the vast holistic puzzle that the drug injury left me with. The histamine link serves as one possible window to access the chaos that has been my injured nervous system. It was a very helpful window for a couple of years. It’s not the window I prefer or use primarily anymore, though the information I gleaned from using this framework moved me along in my healing in significant ways. I prefer to now use more holistic understandings of body/mind/spirit. Histamine is one tiny molecule in our bodies interacting with millions of other microorganisms and chemicals in our bodies. It really doesn’t need to be given such prominence in the long run. Lately I prefer to use Chinese and Ayurvedic medicine to understand the intense complexity that is our human body . Still, the below info on histamine may be very helpful if this is what is currently resonating for you.
I’ve been on an evolution with my diet since the beginning of my journey. Recently I discovered I’ve got a histamine intolerance. Changing my diet to lower histamine is proving to be a change that is bringing about the most obvious shift in symptoms and improvement to date. It’s still early in my discovery and the intolerance is acute so I have setbacks quite often because histamine is in EVERYTHING and it’s hard to lower it and get the diet right.
Histamine intolerance is about minimizing histamine intake since there is no avoiding histamine completely. In fact, we all need histamine.
So, I’ve switched to a low histamine diet…and I’m learning how to go about it. I’m doing this post rather prematurely really because I’m still learning so much about this condition, but I figured I get the information out there because I suspect this may play a part in lots of really severe withdrawal syndromes. Why? Because lots of psych drugs have ANTI-histamine properties, meaning that when people with histamine issues come off of them there is more likely going to be some sort of blow-back.
I don’t, by any means, imagine that all withdrawal syndromes have this going on, but since the histamine affects those with intolerance by challenging the nervous system, and those of us with withdrawal syndromes seem to pretty consistently have radically dysregulated autonomic nervous systems, it might make sense to see if histamine is part of the problem. Also this sort of sensitivity unrecognized could lead to being drugged with psychiatric pharmaceuticals to begin with, so anyone taking some of these drugs might want to rule out this condition. Being that a lot of neuroleptics and benzos and it seems SSRIs too all have significant anti-histamine properties this may impact a good number of folks. I hope to hear more from others as I get this information out to people.
I’ve not researched this thoroughly with all psychiatric drugs, but I know that personally I was on several with potent anti-histamine properties. Risperdal and Seroquel are both very potent anti-histamines.
The woman who writes this blog: The low histamine chef, wasn’t able to come off her psychiatric drug cocktail until she got her histamine levels down. At that point she did not suffer any sort of horrible withdrawal syndrome either. Her history besides the nasty withdrawal syndrome I ended up with, is not unlike mine. We did some compare and contrasts via email.
So, of note, since I was eating FERMENTS and BONE BROTH like crazy…and they’re both high histamine, this info was critically important for me…I needed to stop eating those two things!! (as well as a host of other high histamine foods) The list is pretty long and confusing and as I’ve said, I’m still learning.
I’ll share more as I learn most likely…frankly, I’m in an intense learning curve now…and it is all very fascinating…but I’m also very very tired. Histamine, among other things, also gives one buzzy and creative energy which when one is very ill is actually rather helpful. I didn’t understand that but this blog may have in large part been histamine fueled. A double edge sword, making me sicker, while also allowing me to be productive and so I seem to have often craved the very foods that made me sick so that I might do some marginal functioning. And of course when one is bedridden doing ANYTHING feels better than lying there inert. I wrote. This blog.
I’ve got a ways to go, but this feels different than all the other things I’ve changed. I’ve been on the low histamine diet (with lots of unintentional slip-ups because of how acute the sensitivity is) for 3 weeks. Once I learn exactly what to avoid I hope the progress will step up.
The most noticeable thing is additional physical capacities…while my stamina still remains hugely challenged I’ve been able to walk 30 to 50 minutes in the mountains every day (yes, bonafide short HIKES). Given that a 30 minute walk was something I’ve only been able to achieve once or twice a month for over 2 years this is hugely significant. My goal has been to walk 30 minutes a day for over a year…and generally I cannot manage more than 5 to 20 minutes and really quite often I couldn’t walk at all…so…this is BIG
Also, my autonomic system chaos is significantly toned down…really very much so, but I still can’t live with my husband (he stays downstairs, I upstairs)…but we are able to have more conversations and have meals together again more often. I still need quiet in the house for the bulk of the time, but again, I couldn’t even sit and have a meal with him more than once a week or so…now we often have two meals together in a day and we’re spending more time hanging out…
So, yeah, still baby steps. My nervous system still needs to heal, but diminishing the daily insult that histamine seems to have been should speed it up.
Interesting that in 2007 I was actually tested for histamine by an orthomolecular doctor and I did indeed test HIGH…but her only treatment was SAMe and L-methionine, which sent me through the roof with acute adverse reactions…she didn’t know you could just EAT LESS HISTAMINE!! Why do doctors never appreciate the importance of diet? I might have caught this all that time ago. At that point I didn’t understand the significance of diet myself and I ended up just dismissing the whole thing because she was really clueless about my withdrawal needs and a control freak to boot. So much for orthomolecular docs and alternative docs in general…I have had just as many ridiculous and sad adventures with them as I’ve had with conventional doctors at this point. We need to take our health in our own hands. And yes, I now have a couple of doctors I work with who get it…part of getting it also requires understanding the patient is in the driver’s seat. See: Medical compliance? Adherence? No. My MDs are my PARTNERS
So part of the low histamine diet means I’m also eating as many anti-histamine foods as possible along with LOW histamine foods…(note again, one cannot be on a histamine FREE diet…we all need histamine…those with an intolerance simply reach a threshold where it becomes toxic)
Okay, because I’m not really ready to do a proper presentation and I am very tired I’m including an email my husband wrote to me. He had read this article: Histamine intolerance. Dr Janice Joneja –Feels Like Allergy; It Looks Like Allergy; But It’s Not An Allergy! After he read it he wrote his thoughts as they pertain to me. Some of his ideas will likely pertain to others with withdrawal syndrome, which is why I’m sharing it. I’ve inserted a few of my own notes in the text as well.
The email from my husband:
Subject: a conceptual framework for understanding the histamine issue
I understand that your primary interest right now is on practical tips for reducing histamine exposure, but I think that you’ll be better equipped to handle this with some important information about what causes histamine intolerance.
The best thing I’ve read so far is this article by Janice Joneja. She has a PhD in medical microbiology and immunology.
I’ll pick out some of the key points (I’m not assuming that any of this information is new to you):
1. One likely cause of your histamine intolerance was your childhood use of antibiotics. “The bacteria now in your intestines may be the types that make histamine from incompletely digested food materials that pass into the bowel.”
Although your gut is obviously much better than it was, there might be some benefit from supplementing with specific probiotics that diminish the proportion of histamine producing bacteria. (This is not an issue her article elaborates on and I don’t know where or if you might find the right information)
2. “There are a large number of microorganisms that are capable of producing histamine. Many of the bacteria that live in the human large bowel produce histidine decarboxylase and are capable of converting the histidine in any protein that enters the bowel into histamine. Therefore, the more microorganisms that produce histidine decarboxylase that are present in the colon, and the greater the amount of protein material that enters the bowel, the higher the level of histamine in the digestive tract. From here, histamine can be conveyed through the bowel wall to various sites in the body.”
This is important since it means that protein from any source will increase histamine — but don’t get freaked out about that idea. (note added by Monica/Gianna — I am currently unable to eat most animal proteins. Given that I have issues with vegetable proteins not keeping my blood sugar balanced, this is something I need to tweak out. I don’t want to opt for diabetes in order to heal my nervous system. I use a glucose meter at home to monitor my blood sugar –my paleo-ish diet has allowed me to lower my blood sugar and my risk of diabetes so this is an important issue I need to work out)
The key concepts to keep in mind here is that you have a tolerance threshold and staying below it may have as much to do with how you spread your food consumption (and specifically protein intake) through the day, as it has to do with which specific foods you consume.
3. “[S]ymptoms of histamine intolerance, although they may be the same in type [as allergies], take time to appear and are not evident immediately after histamine-rich foods and beverages are consumed. This is because the level of histamine needs to reach a certain critical level before the tissues respond. Thus, a small amount of histamine will not cause a response – it is the total amount of histamine in the body, in excess of the body’s requirements, that causes the reaction. It is like filling a bucket with water. Everything is fine until the water level reaches the top of the bucket and overflows. Then your feet get wet!”
4. “As a result of the multiple factors contributing to excess histamine, combined with each individual’s capacity to deal with histamine excess, symptoms of histamine intolerance are constantly changing in incidence and severity. Unlike an allergy in which the presence of the antigen results in an immediate immunological response and development of typical symptoms, histamine intolerance is frequently baffling because a specific food does not always result in clinical symptoms. Therefore, it is not possible to eliminate just those foods that cause a reaction. It is necessary to restrict a person’s intake of histamine-associated foods to a total that remains below their personal limit of tolerance.
5. Symptoms that clearly apply to you:
- Hypotension (drop in blood pressure)
- Tachycardia (increased pulse rate, “heart racing”)
- Symptoms resembling an anxiety or panic attack
- Chest pain
- Some types of headaches that differ from those of migraine
- Fatigue, confusion, irritability
6. It seems to me unlikely that you have a congenital predisposition to histamine intolerance. Why? Because over a long period you unwittingly combined a ‘perfect storm’ of conditions that would be almost certain to result in histamine intolerance:
- Chronic use of antibiotics as a teenager, resulting in proliferation of histamine-producing gut flora;
- Chronic use of histamine-receptor blocking anti-psychotics, whose discontinuation probably meant that your body started producing more histamine after all the receptors previously blocked by risperdal became histamine ‘hungry’;
- A diet rich in histamine from fermentation; loading your gut with histamine-producing flora; and then having a high protein diet producing even more histamine.
My conclusion: It seems like there are three fronts you can work on:
- Reducing your histamine intake by eating the right foods. (BTW, it seems like all shellfish should be avoided because they are not gutted and the gut is always histamine-rich.)
- Spreading your histamine intake by eating smaller dishes more frequently and never eating a large amount of protein in one meal. Beans may be good in this respect since they are a less concentrated source of protein than meat. (Monica’s note: they’ve been problematic with my blood sugar and metabolic issues…I will need to tweak this to get it right)
- Using the appropriate kind of probiotics to diminish the histamine-producing flora that currently populate your gut.
Also, of note: I do not have typical seasonal allergies of any kind. So this doesn’t only apply to people with regular and recognized histamine reactions.
There is not a whole lot of information available on histamine intolerance. The information about the diet and foods that are okay vary HUGELY. This is most likely because the severity of the intolerance can vary a lot and so those with less severe issues really have different needs than those with really severe intolerances.
My update on histamine on Beyond Meds: The histamine intolerance link and how this paleo girl went vegetarian (even vegan, for the time being!) and more here now: A mini histamine intolerance round-up
This is a small collection of that which I’ve found helpful.
First is the article that my husband borrowed from above:
● Histamine intolerance. Dr Janice Joneja –Feels Like Allergy; It Looks Like Allergy; But It’s Not An Allergy! — I found this to be very thorough but also easy for the layperson to understand
● The low histamine chef — the site includes lots of wonderful and difficult information about histamine issues and her recipes are also delightful, though right now I can’t actually eat a good number of things she includes in the recipes because of how acute my sensitivity is right now. Later on that will likely change as my threshold lowers and my symptoms clear up. The author has also told me that she will soon be publishing a new cookbook that will include only anti-histamine and low histamine ingredients. I plan to purchase that book.
● Low amine recipes — this site too has some good info and recipes. I also can’t eat a lot of what she includes at this time, but again, that will likely change.
Note: Foods marked with H or T correlate with Histamine and Tyramine. For instance, a “T” in the “low” column but “H” in the high column would mean that food item is low in Tyramines, but high in Histamines. Information on histamines and tyramines is difficult to find, so forgive the incomplete nature of the information regarding this.
UPDATE AND CORRECTION: the above list ended up being rather confusing and unhelpful to me in the long run. I have found this list to be much more accurate. The bottom line, though, is that one must make their own list as we all react a bit differently to foods. So a list is never the final word. Your body is.
Update 2016: IN THE END FOOD LISTS ARE ONLY HELPFUL WHEN RIGHT AT FIRST TRYING TO MINIMIZE HISTAMINE so that we can minimize inflammation and calm everything down. LATER ON YOU REALLY WANT TO LEARN TO ADD BACK MOST FOODS AND I CAN TELL YOU THAT IT IS POSSIBLE. WE DO NOT HAVE TO EAT LOW HISTAMINE FOREVER! WE REALLY CAN HEAL.
Update: more resources:
Headaches, Hives, and Heartburn: Could Histamine Be the Cause? — Chris Kresser, comments well worth reading
The many faces of histamine intolerance — Healthy Pixels
Cumulative Histamine – looking below the neck in psychosis – a blog that looks through several different lenses at the histamine issue
*it is potentially dangerous to come off medications without careful planning. Please be sure to be well educated before undertaking any sort of discontinuation of medications. If your MD agrees to help you do so, do not assume they know how to do it well even if they claim to have experience. They are generally not trained in discontinuation and may not know how to recognize withdrawal issues. A lot of withdrawal issues are misdiagnosed to be psychiatric problems. This is why it’s good to educate oneself and find a doctor who is willing to learn with you as your partner in care. Really all doctors should always be willing to do this as we are all individuals and need to be treated as such. See: Psychiatric drug withdrawal and protracted withdrawal syndrome round-up
It’s become clear to me that whenever it’s possible that it’s helpful for folks who’ve not begun withdrawal and have the time to consider a carefully thought out plan to attempt to bring greater well-being to your body before starting the withdrawal. That means learning how to profoundly nourish your body/mind and spirit prior to beginning a withdrawal. For suggestions on how to go about doing that check the drop-down menus on this blog for ideas. Anything that helps you learn how to live well can be part of your plan. That plan will look different for everyone as we learn to follow our hearts and find our own unique paths in the world. Things to begin considering are diet, exercise and movement, meditation/contemplation etc. Paying attention to all these things as you do them helps too. The body will start letting us know what it needs as we learn to pay attention.
For a multitude of ideas about how to create a life filled with safe alternatives to psychiatric drugs visit the drop-down menus at the top of this page.