Genetically determined histamine intolerance
This blog post is not a purely informational blog as you might be used to. This time, it is a very personal and intimate article intended to encourage you and give you hope. The following text is about genetically determined histamine intolerance, how to deal with it personally, and the prospects that exist even with a genetically determined histamine intolerance.
I'm Jessi, and I am also affected by histamine intolerance. Specifically, the genetically determined type. In this article, I want to tell you what that means, how I have dealt with it and still do, and how I received this diagnosis.
IMPORTANT: As mentioned, this is not a purely informational article; it is based on personal experience. I am not a nutritionist, nor do I have a background in nutritional science. My path 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 a genetically determined histamine intolerance?
There are quite a few causes for histamine intolerance, including 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). This DAO activity is not reduced by something like gut flora dysbiosis that could recover, but is genetically predetermined to simply not be as active as it should be. This is, of course, not good, because DAO breaks down extracellular histamine in the gut, kidneys, tissue, and blood.
But let me start from the beginning:
My everyday life before the "genetically determined histamine intolerance" diagnosis
From a young age, I had trouble with my stomach and my immune system. I often had stomach aches, a poor appetite, and was frequently ill. These illnesses were often accompanied by the use of antibiotics. Additionally, I had a rash after eating strawberries. As a young child, that didn't stop me from continuing to eat those delicious strawberries, of course. It was like that with many things—whether it was a bread roll with chocolate hazelnut spread for breakfast, spaghetti bolognese with lots of sprinkled parmesan for dinner, or a hot chocolate to drink every evening in the winter. It simply tasted good, and yes: I miss it.
Moving from nutrition to physical activity: in primary school, I loved athletics. In general, I loved sports and enjoyed doing them. However, at some point, I started feeling bad after exercising, especially after endurance sports. The effects—though I only know this now—didn't appear until 1 to 2 days later and manifested as gastrointestinal complaints, a feeling of complete exhaustion, breathing difficulties, heart arrhythmias, and hellish muscle pain. Back then, I never would have linked these symptoms to exercise.
So, back to nutrition. My mom tried a lot of things with me; we tried everything from lactose-free to gluten-free. Nothing really changed. Over time, things became increasingly difficult psychologically as well. By then, I was also taking the birth control pill. It at least helped with my hellish menstrual cramps, which were otherwise truly unbearable. My diet, however, remained the same.
Quite a lot had been building up in my body for a long time: multiple courses of antibiotics without any subsequent gut rebuilding, a high dose of hormones for quite a long time, and a lot of histamine from my diet as well as physical activity. Mostly starting from a young age.
Normal everyday life at school, in my free time, on vacations with hotel breakfasts or dinner buffets, family celebrations, the first evenings out with alcohol... Somehow, I never felt good; something was always wrong.
This uncertainty and the internal stress made everything slightly worse.
The path to the diagnosis "genetically determined histamine intolerance"
So, I went from doctor to doctor; many blamed it on my psyche or exclusively on stress. Blood tests revealed some nutrient deficiencies, but nothing changed despite treatment.
It wasn't until I was almost 18 that I finally ended up with a doctor who brought up the term "histamine intolerance." I had never heard of it before. I was advised to keep an eye on my diet and write down what I ate and how I felt afterward.
TIP: A food and symptom diary is suitable for such observations. It allows you to track exactly what you ate and how you reacted to it. Furthermore, you can track symptoms that only occur up to 72 hours later, which is often the case with liberators.
Eventually, tests were done to confirm the diagnosis. Then came the genetic laboratory analysis, which revealed: histamine intolerance, genetically determined.
My everyday life after the "genetically determined histamine intolerance" diagnosis
You might think, "Great! The diagnosis is in, now everything can get better!"
And unfortunately, that was when things really got bad. I was completely overwhelmed, my family was overwhelmed—no one knew what histamine was, let alone histamine intolerance. And this happened just as I was becoming an adult, my A-levels were around the corner, and I definitely had other things on my mind than dealing with complicated biogenic amines and new forms of nutrition.
No one could tell me much more about it either. My doctor said that about 1% of the population suffers from a (diagnosed) histamine intolerance, but that it was not yet well-known or researched in Germany at all. Austria was reportedly further along. I really thought for a long time that I was the only one suffering from this intolerance and that no one would ever understand. And I thought I would surely never be able to eat "normally" again.
IMPORTANT: "Normal" is in quotation marks here because I now have a different definition of "normal." People affected by histamine intolerance can also 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 hay fever pills seemingly helped.
I got by quite well with that for a while, but eventually, the pills stopped working or the symptoms of histamine intolerance became too strong and too present. Over time, I also developed some panic, for example, when visiting restaurants, in the grocery store, or before or while driving, and even during long walks. By the way, at that time I still didn't know that things like exercise also trigger histamine.
So, during my university days, I signed up for university sports again and took a strenuous abs, legs, and glutes class. That was a few years ago now, and I will never forget how bad I felt the day after that class. At that moment, I was standing in a drugstore and the histamine symptoms completely knocked me for six.
It was time to face the histamine intolerance
I finally had to face the diagnosis and know what I needed to change and what I needed to watch out for. Instagram was slowly becoming more popular for bloggers, luckily for me. Searching the hashtag #histamineintolerance led me to a few profiles that reported on their journey with histamine intolerance. Primarily, I was looking for recipe ideas and everyday tips.
After I learned from HistaFood that while the DAO enzyme is indispensable for histamine breakdown, there is actually another enzyme that breaks down histamine, I briefly lost faith. On the one hand, I wondered how it could be that I had never heard or read about this anywhere, and on the other hand, I was simply relieved.
This second histamine-degrading enzyme is called 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 rather only in the gut or blood, for example.
IMPORTANT: Just because you might also be affected by a genetically determined histamine intolerance, it does not mean that your diamine oxidase is not working properly either. It can also be the other way around: your DAO might be working fine, but the HNMT enzyme is not.
My solution for genetically determined histamine intolerance
So, what was my actual solution?
Bringing the gut into balance, restoring it, and treating it well so that it at least feels good and is ready to utilize the remaining activity of the DAO enzyme, AND relieving and supporting the liver to benefit as much as possible from the HNMT enzyme.
Another thing that helped me a lot: I no longer see myself as a person who is extremely difficult regarding eating habits and always has special requests. I used to voluntarily take pills just so I wouldn't be an inconvenience to others. Now, I insist that those around me accept my intolerance. No one has to cook for me; I can do that myself.
But no one can demand that I "just eat something, it can't be that bad." I stand up for myself and my health, which definitely changed something in my overall well-being.
All of this was a long, difficult path, and it is still difficult in phases. Especially when my biggest triggers—heat, stress, and exercise—come into play and I have to pay extreme attention to my diet. But I am on the right path, I know what I have and what I need to do to feel good, and that is the most important thing for now.
My current everyday life with genetically determined histamine intolerance
I only have a few problems with a low-histamine diet in my daily life now. I actually always find something to eat, and for me, low-histamine food is definitely not one-sided. By the way, some of my favorite dishes include these:
Spelt Spirelli with Carrot-Pepper Sauce and Pumpkin Seed Halloumi
Baked Sweet Potato with Asparagus
Potato Fritters 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 to give up. As an alternative, I love this recipe, for example: Salted caramel popcorn.
I still take nutritional supplements to consistently provide my body with what it needs and to support it.
(Endurance) sports are still something I can't really do, which, of course, hardly anyone understands. "You can't be allergic to exercise!", "Sport is so healthy for the body!"—Yes, appropriate sport that is tailored to the body. But I haven't found that for myself yet. My physical activity consists of daily walks and playing with my Labrador. And she demands a lot of movement—which works perfectly 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 with a genetically determined histamine intolerance: No, it is not impossible! Unfortunately, a cure is not expected, as the problem lies in the genetics, but an improvement—sure, why not? Nothing happens on its own, but the journey is worth it!
I have learned so incredibly much from this time and view many things positively. I probably wouldn't have such a healthy lifestyle as I do now if I didn't have histamine intolerance. Sure, the beginning and the first few years were bad. Some phases still are, especially regarding the psychological aspect. But for the most part, I have a positive mindset, have learned an incredible amount about my body, can read and understand it, and react accordingly, and I am now frightened by the typical food industry. I probably wouldn't have this knowledge if I had never dealt with nutrition and questioned many things.
I, too, still haven't clarified everything that concerns my body. To take that on, you need a lot of strength to endure the potential marathon of doctor visits and not give up. If you also want to take this path with us, simply take a look around our website.
Are you still at the beginning of your low-histamine diet? Then we would like to make the start a little easier for you. In our HistaStarter set, you will find six selected organic foods that are suitable for a low-histamine diet—for more variety and enjoyment in your new daily nutrition.
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