Genetically determined histamine intolerance
This blog post isn't your typical informative blog. This time, it's a very personal and intimate piece, meant to encourage you and give you hope. It's about genetically determined histamine intolerance, how to cope with it personally, and the possibilities that exist even with this condition.
My name is Jessi, and I also suffer from histamine intolerance. However, mine is genetic. In this article, I'd like to tell you what that means, how I dealt with it, how I still deal with it, and how I received this diagnosis.
IMPORTANT: As mentioned, this is not purely an informational article, but is based on personal experience. I am not a nutritionist or have a background in nutritional science. My journey is not a guide for others, but is simply meant to show you that you are not alone and that such a diagnosis is not hopeless.
What is genetically determined histamine intolerance?
There are quite a few causes of histamine intolerance. These include, for example, gut flora dysbiosis, hormonal imbalances, nutrient deficiencies, or a genetic defect. In my case, this means I have reduced activity of the DAO enzyme (diamine oxidase). So, the DAO activity isn't reduced by, for example, gut flora dysbiosis and can regenerate; rather, it's genetically determined that it's simply not as active as it should be. This is obviously not good, because DAO breaks down extracellular histamine in the intestines, kidneys, tissues, and blood.
But I'll start from the beginning:
My everyday life before the diagnosis of "genetically determined histamine intolerance"
From a young age, I had problems with my stomach and my immune system. I often had stomach aches, little appetite, and was frequently ill. These illnesses often required antibiotics. I also used to get a rash after eating strawberries. But as a small child, this didn't stop me from continuing to eat those delicious strawberries. It was the same with many things – whether it was a roll with chocolate-hazelnut spread for breakfast, spaghetti Bolognese with lots of Parmesan for dinner, or a hot chocolate to drink every evening in winter. It simply tasted good, and yes, I miss it.
Away from diet, towards exercise: in elementary school, I loved track and field. Generally, I loved sports and enjoyed doing them. At some point, however, I started feeling unwell after exercising, especially after endurance sports. The effects—I only realize this now—didn't appear until one or two days later and manifested as gastrointestinal problems, complete exhaustion, shortness of breath, heart palpitations, and excruciating muscle pain. Back then, I would never have connected these symptoms with sports.
So, back to diet again. My mom tried a lot of things with me; we went from lactose-free to gluten-free. Nothing really changed. Over time, it became increasingly difficult psychologically as well. I also started taking the birth control pill. At least that helped with my excruciating period pains, which were otherwise truly unbearable. But my diet remained the same.
So, for quite some time, a lot had been building up in my body: several courses of antibiotics without proper gut restoration afterward, a long period of high hormone levels, and a lot of histamine from my diet and physical activity. Mostly since I was quite young.
Normal everyday life at school, in my free time, on holidays with hotel breakfast or buffet in the evening, family celebrations, the first evenings with alcohol, ... Somehow I was never well, there was always something wrong.
This uncertainty, this inner stress, has made everything a little worse.
The path to a diagnosis of "genetically determined histamine intolerance"
So I went from doctor to doctor; many attributed it to psychological factors or solely to stress. Blood tests revealed several nutrient deficiencies. Despite this, nothing improved.
It wasn't until I was almost 18 that I finally ended up at a doctor's office, and she brought up the term "histamine intolerance." I'd never heard of it before. I was told to keep track of my diet and write down what I ate and when, and how I felt afterward.
TIP: A food and symptom diary is useful for this kind of observation. It allows you to keep a close eye on what you ate and how you reacted to it. You can also track symptoms that only appear 72 hours later, as is often the case with Liberator syndrome.
Finally, tests were carried out to confirm the diagnosis. Then came the genetic laboratory test, which revealed: histamine intolerance, genetically determined.
My everyday life after being diagnosed with "genetically determined histamine intolerance"
So one might think: "Great! The diagnosis is in, now everything can get better!"
And unfortunately, things only got really bad after that. I was completely overwhelmed, my family was overwhelmed – nobody knew what histamine was, let alone histamine intolerance. And this was at a time when I was growing up, my final exams were just around the corner, and I definitely had other things on my mind than dealing with complicated biogenic amines and new diets.
No one else could tell me anything more about it. My doctor said that about 1% of the population suffers from a (diagnosed) histamine intolerance, but that it's still completely unknown and unresearched in Germany. Austria is further ahead in this regard. For a long time, I really thought I was one of the only ones suffering from this intolerance and that no one would ever understand. And I thought I'd probably never be able to eat "normally" again.
IMPORTANT: "Normal" is in quotation marks here because I now have a different definition of "normal." Even those with histamine intolerance can eat normally again, just not necessarily unhealthily, preferably without additives, and some foods should be avoided.
So what was my solution? Quite simply: ignorance. The second solution: taking pills. Because I knew that the symptoms of histamine intolerance are similar to those of an allergy. So my regular pollen tablets apparently helped.
I managed well with that for quite a while, but eventually the tablets stopped working, or rather, the symptoms of histamine intolerance became too severe and persistent. Over time, I also developed some panic attacks, for example, when visiting restaurants, shopping, or before or while driving, and even during long walks. Incidentally, at that time I still didn't know that exercise, for example, can also trigger histamine.
So, during my university days, I signed up for university sports again and took part in a challenging abs, legs, and glutes class. That was several years ago now, and I'll never forget how awful I felt the day after that class. I was standing in the drugstore at the time, and the histamine symptoms completely knocked me off my feet.
It was time to address histamine intolerance.
So I finally had to face the diagnosis and figure out what I needed to change and what to pay attention to. Luckily for me, Instagram was becoming increasingly popular with bloggers. Searching for the hashtag #histamineintolerance led me to a few profiles sharing their experiences with histamine intolerance. I was primarily looking for recipe ideas and practical tips for everyday life.
After learning from HistaFood that while the DAO enzyme is essential for histamine breakdown, there's another enzyme that also breaks down histamine, I was briefly stunned. On the one hand, I wondered how I'd never heard or read about this before, and on the other hand, I was simply relieved.
This is the second histamine-degrading enzyme, histamine N-methyltransferase, abbreviated HNMT. This enzyme is located in the liver and breaks down intracellular histamine – specifically in the liver, kidneys, bronchial mucosa, and the central nervous system.
Furthermore, DAO enzymes are found in various organs and even in the blood. In many cases, the genetically determined reduced DAO activity is not present everywhere, but, for example, only in the intestines or in the blood.
IMPORTANT: Just because you might also be affected by a genetically determined histamine intolerance doesn't mean that your diamine oxidase (DAO) isn't working properly. It could be the other way around: your DAO might be working well, but your HNMT enzyme might not.
My solution for genetically determined histamine intolerance
So what was my correct solution?
Bring the gut into balance, restore and treat it well so that it at least feels good and is ready to use the last activity of the DAO enzyme AND relieve and build up the liver in order to benefit as much as possible from the HNMT enzyme.
Another thing that has helped me a lot: I no longer see myself as someone who is incredibly difficult when it comes to eating habits and always has special requests. I used to take medication voluntarily so as not to inconvenience others. Now I insist that the people around me accept my intolerance. Nobody has to cook for me; I can do that myself.
But nobody can expect me to "just eat something, it can't be that bad." I stand up for myself and my health, which has definitely changed my well-being.
It's been a long and difficult journey, and it's still challenging at times. Especially when my biggest triggers – heat, stress, and exercise – come into play, and I have to be extremely careful about my diet. But I'm on the right track, I know what I have and what I need to do to feel good, and that's the most important thing right now.
My current daily life with genetically determined histamine intolerance
I have very few problems with a low-histamine diet in my daily life anymore. I can almost always find something to eat, and low-histamine food is definitely not monotonous for me. Some of my favorite dishes include these:
Spelt spiral pasta with carrot and bell pepper sauce and pumpkin seed halloumi
Baked sweet potato with asparagus
Potato pancakes with applesauce
My biggest hurdle since childhood has been sugar, sweets, or simply snacking on the sofa in the evening. Nothing is harder for me than giving it up. As an alternative, I love this recipe, for example: Salted Caramel Popcorn.
I still take dietary supplements to consistently give my body what it needs and to support it.
I still can't really do endurance sports, which of course hardly anyone understands. "You can't be allergic to exercise!", "Exercise is so healthy for the body!" – Yes, appropriate exercise, tailored to the body. But I haven't found that for myself yet. My exercise consists of daily walks and playing with my Labrador. And she requires a lot of exercise – which is perfectly fine for me and my body.
Genetically determined histamine intolerance: Is a cure or improvement possible?
So, to answer the question of whether improvement is impossible in a genetically determined histamine intolerance: No, it's not impossible! A cure is unfortunately unlikely, as the problem lies in genetics, but improvement – sure, why not? Nothing happens by itself, but the journey is worthwhile!
I learned so incredibly much during that time and see many things in a positive light. I probably wouldn't have such a healthy lifestyle as I do now if I didn't have a histamine intolerance. Sure, the beginning and the first few years were tough. Some phases still are, especially mentally. But for the most part, I have a positive mindset, I've learned an unbelievable amount about my body, I can read and understand it and react accordingly, and I'm now appalled by the mainstream food industry . I probably wouldn't have this knowledge if I had never engaged with nutrition and questioned so much.
I still haven't sorted out all the issues concerning my body. Taking on this challenge requires a lot of strength to persevere through the potential marathon of doctor's appointments and not give up. If you'd like to join us on this journey, feel free to explore our website.