How I cured myself from the incurable “skin writing disease”
Skin writing disease — sometimes also called idiopathic dermographism, chronic idiopathic urticaria (CIU), or dermatographic urticaria- can have a plethora of causes. Doctors mark it idiopathic once they are unable to find a cause… and that was exactly my case. The end diagnosis of my immunologist was that it is “genetic” and incurable. Luckily I did not give up and found a cure.
In my 7 years-long search for curing it, I stumbled across many articles and stories, but I did not find any solutions. I read a lot about similar conditions — sun, cold, and stress initiated.
Mine was purely pressure related, but the solution I found should be useful even for those not pressure related.
The symptoms first appeared in February of 2010. One day the skin on my back suddenly started itching when I was sitting and leaning back in a chair and the more I scratched it, the more it itched.
I visited an immunologist who prescribed me with anti-histamines called Ewofex, it was based on fexofenadine.
It relieved me of the symptoms, so where the skin itched, was kind of 3D and yellow, it became 2D, red and did not hurt/itch. QoL, “Quality of life” elevated — but the cause was still hidden.
By the way, I found that almost all people writing about this disease have very pale skin — yeah, I have not been going outside either at that time ;)
The doctor told me that I should dose every day with the pills and wait until it heals itself. Yeah, right. Like that ever works, just hiding the symptoms and ignoring the cause. But that is western medicine for you.
Going into analysis
I visited a gastroenterologist and immunologist and they did not find anything either (no parasites, no immune-deficiency, just ELEVATED BILIRUBIN and worse than normal C4 complement.).
Elevated bilirubin is called hyperbilirubinemia, or hyperuricemia — both of which are mostly caused by improper liver function.
When you eat so little that your body goes into a catabolic state and starts burning your muscles to obtain energy. In which I was most of the time — when I was playing PC games I did not feel hunger, because my brain was so preoccupied with the games and bombarded by dopamine from the instantly rewarding stimulus.
The immunologist ended it with “The bilirubin in your blood is of hereditary causes. Does your dad have gout? You will too. It’s in your DNA.”
The bilirubin was the main symptom, doctors diagnosed it as M. Gilbert syndrome, hereditary.. oh okay. I guess I should accept my fate then. Later it turned out that it was not hereditary at all — doctors just diagnose something as hereditary when they don’t know what pills to prescribe you anymore.
If I believed him and accepted that it is incurable I would never have healed myself. Never give up!
First I found and tried Daosin, which is diamine-oxidase in pill form, because histamine is broken down by it. It did not help me at all. In some cases it might, but not in mine. It was like turning on the windshield wipers when you are in a middle of a sandstorm, hoping you will see better. My gastrointestinal tract was in such a devastated state, that some pills would not help.
The doctor tried to help a bit, he proposed diets, like a gluten-free diet. I was 15 and a gamer, so eating junk food all day and drinking soda, for YEARS. In my 15-year old mindset, I stayed with my normal eating and lifestyle habits, except I avoided bread. Nothing changed, of course.
Some years later I did have a “spiritual” event in my life, which changed my personality a bit.
I took interest in psychosomatics and Chinese medicine.. but more on that later. Let’s say I read some books and found some interesting stuff.
Right after that, I had a (foolish) feeling that I can control the illness with my mind if I meditated a lot.
So I went off medication for about a week. First 4 days I was lying to myself that I don’t have it, I am healthy. It came back in full strength, of course. And I just couldn’t handle the pain.
This is also the time in which I seriously meditate, so I focus more on sensations in my body (anapana sati, vipassana).
And then I saw something I knew but did not admit to myself for years — the pills I have been taking for years have just been alleviating the symptoms, not healing me. Doctors gave it to me to shut me up and so I can have a decent “QoL”.
But when I covered the symptoms, I was also “shutting up” my body, screaming for help. Don’t ever do that to yourself, please. Listen to your body. It is telling you exactly what it needs, but in our society we are too used to just shut it up.
I understood all of this after reading the psychosomatic book — almost all illnesses stem from repressed emotions or of course, treating your body like shit and ignoring it. Which I did.
I was a few days off medication, just to experiment on myself.
One day at lunch I was eating tofu, beans with tomato sauce and rice at my job. This is 4th day in row on the same food and without anti-histamines.
About 30 minutes after I finish eating my hands start pulsating. I did not touch anything except the fork in the past hour so my hands should NOT be pulsating and itching (as would normally occur if I irritated the skin somehow).
„What is this?! “ I whispered.
An idea jumped into my head and I googled “acupressure points on hands” immediately.
On both hands the regions matched the area of the liver and gut.
And that got me thinking. I googled some more and I just had to take a photo of the PC screen. I still have it:
I didn’t take any “real” actions yet, but the idea of being able to heal this with the help of researching it myself stayed in my head.
I went drinking with my friends a few days after. Day after the party I had bloody stool, first time in my life. And that freaked me out a lot. But also, I was off medication AND drinking, in this combination, for the first time.
So I wrote down everything I ate that day, just to debug and analyze possible dietary causes:
rye bread, hummus; smoothie — sunflower seeds, almonds, goji, chia, 2 bananas, unfiltered tap water; jasmine green tea
beer, croissant, piece of cake, apple cider
Next hangover breakfast and lunch
instant coffee, chocolate croissant, 2 soya yogurts, goji, sunflower seeds, clementine, chia, eggs, potatoes, dill sauce, jasmine tea
So as you can see — loads of sugar, gluten, and alcohol — not very friendly to your intestines at all, but I wasn’t aware of that back then.
So the illness was manifesting itself this way and I was not going to ignore the symptoms this time or try to suppress them. I calmly examined the situation, it was not dark blood, which means it was not from a stomach bleeding, it was light, which meant gut inflammation.
Right there and then I went into almost crazy-analysis of everything about my body (that I quit my job about a week before helped a lot — loads of free time to do research!), researching immunology, inner workings of organs, hormones, NCBI papers.. for 2 weeks I spent 10 hours or more a day on it.. it went to such extremes that I was washing dishes and a deep voice in my head asked me a question — “What about cytokines?”. I didn’t know what cytokines are, but I looked into it. No, it was not the solution at all, but you get the idea of how deep I was in it. My unconscious started throwing ideas at me.
All you have to do to heal the illness you have is to go back to when it started.
For me, it was high school. I was a nerdy kid. I would come home and play games all day long, all night long. Call of Duty mainly, but anything really, just to escape from reality.
And here it comes — I was also drinking Coca Cola instead of water. Every day 2 liters (64 ounces). Do you know what a monstrous pile of sugar that is?
I began on the wrong track at first, researching immunity, but the information I found still helped, it got me deeper and deeper. Just don’t stop.
High bilirubin is a product of imperfect workings of the liver. But you cannot have a healthy liver without healing the gut first.
Hippocrates — “All Disease Begins In The Gut”
I also researched gut bacteria, butyrate acid (C4) production sites, and eventually I got to something called leaky gut.
As I found, the whole illness could be reversed by harmonizing extreme levels of candida bacteria I had in the gut, thanks to the enormous amount of sugar I was drinking.
Good bacteria vs bad bacteria
You have bad bacteria and good bacteria in your gut, and even the Chinese knew 3000 years ago that there is a gut-mind connection. Yes, because the bacteria in your gut help you generate neurotransmitters, such as serotonin and dopamine (serotonin more so, about 90% of it is created in your gut!). So your mind is in the same state as your gut basically, and that is a huge deal for mental disorders — depression or ADHD.
But back to the sugar. I was drinking tons and tons of sugary coca-cola and sugar feeds the bad bacteria, Candida albicans.
When you have a bacterial imbalance in your gut, the bad bacteria can overtake the good and start eating through your gut lining.
Then there are saponins, chemicals that are contained in nuts and seeds, quinoa, tomatoes and legumes (beans). They are nature’s way of saying “don’t eat me” (if you eat a lot as an animal, you lower your rate of survival, effectively killing off your species)… Saponins literally eat holes in your gut lining, thus making it more permeable.
Combine that with sugar and bad bacteria and you are in for a treat!
This way almost everything you eat becomes toxic for your body because the undigested particles leak to your body. Then the cytokines and zonulin cause a chain reaction which leads to another (auto-immune) reaction. Your cells become inflamed which causes histamine to release, and now you have itching skin. Thus the term “leaky gut”, as is this condition called. Increased intestinal permeability.
Reversing the damage
I did not wait for my “doctor” to confirm all of this. I started studying the leaky gut condition and the associated diets (GAPS).
Here it is roughly… a VERY restrictive elimination diet. You start with almost nothing.
A lot of meat — which was a problem because I was playing with veganism at that time. But tofu released toxins a lot (even now I get inflamed, just shows you how unhealthy an unfermented soy is. Tempeh is a different story tho :)
I ate only tempeh, rice, sweet potatoes occasionally (sugar in them), potatoes and buckwheat.
And strawberries, bananas and blueberries (lowest glycemic index, so important if you have to avoid sugar to starve the Candida. It was full-on war!).
So basically it’s diabetic/gluten intolerant diet. If I had not given up being a vegan (which was a silly decision at that time) and haven’t started eating meat and eggs I would have lost more than 7 kilos like I did. In a month!!
I was treating my gut like a baby. Soft foods, even the buckwheat was soaked in water for 1 day before I cooked it in filtered water and ate it.
Another source of toxins was water. So I drank only tap water first filtered with Japanese filtering coal for a few hours, mostly overnight.
Of course no coffee, that would just add more acidity to the stomach and hence bloodstream.
I drank a lot of matcha tea and I was supplementing with various herbs like gotu kola, spirulina, ashwagandha, schisandris chinense, chlorella and acerola (most of them were just experiments; herbs like spirulina and chlorella are great for digestive tract and detox though. I was using the rest of the herbs for increased mental performance). I was also experimenting with linden extract (relaxes the gut and helps digestion).
Every few days I would allow myself goji (high glycemic index).
Very important was L-glutamine — in fitness it’s used for rebuilding muscle, but it also helps to rebuild your gut lining — almost any leaky gut diet website will tell you to use it, so will NCBI research.
I was also taking digestive enzymes, which help with digestion a lot, so the food is not as hard on your stomach and gut.
I took a diary of everything I ate and then analyzed it for correlations. Every now and then I would cause myself a slightly painful scratch and then watch how soon after it a skin reaction would show up. I also rated the pain on scale 1 to 10.
I discovered that the skin reaction was almost non-existent when I was hungry, so that confirmed my theory in the beginning of the experiment that it is digestive tract related.
Then when I allowed myself coffee I discovered that it’s one of the causes too. Another triggers were tofu and sugar. Fructose from fruit was okay.
Anyway, its been a few years since I started this diet and I did not take any pills at that time. I held the diet for about 4–5 months, being most strict in the first two. Now I consider myself completely healed, but one thing I try to avoid is sugar, as it was the main cause of the Candida overgrowth.
[edit 4th of May 2020:] some time ago I discovered Mikhaila Peterson and her diet which is very very similar to what I have been doing. She discovered it the same way I did and for similar reasons (well, hers were a lot more life-threatening, so she had a way stronger motivation. Mine was anger (about the disease), her was probably anger and fear of death, so her diet was way more extreme.)
Anyway… she managed to help not only herself, but even her father, Jordan Peterson, and got him out of 30 years-long depression, caused by Candida. Turns out his alcohol addiction destroyed his gut when he was young (he gave the addiction up around 25), but the weak gut was still there. If you watch his earlier lectures you see him sipping on Coca Cola all the time. And it seems that there was a kind of a leaky gut syndrome in the Peterson family, because of the diet they ate. Mikhaila found the cause and fixed it. There is a fascinating video about it, where she describes the tough journey:
[edit 30th of May 2020:] 6 months ago a girl named Erica contacted me, telling me she found my article and she is currently in the Czech Republic due to an athletic team championship she is taking a part in (professional volleyball, hard training routines 6 days a week, calorie heavy diet). She wanted to talk about the illness so we met and talked for 5 hours about it. Turns out she has CIU and at first I couldn’t believe she had the same stuff I had AND she kept playing a sport such as volleyball, where the skin gets irritated constantly. Today I messaged her and it seems that the methods described here worked for her! See for yourself, I hope it will also give you some hope and motivation to go through with this diet:
If you have any questions, please leave them in the comment section, I will be happy to answer.
This is every link I saved in my 31 pages of documentation and research, sorted by the studied subject. The links are in more or less chronological order (see below; backup link).
CIU links — I,II,III,IV,V,VI,VII,VIII,IX,X
Thyroid, TSH, Immune system — I,II,III,IV,V,VI,VII
Histamine, Liver function — I,II,III ,IV,V,VI,VII,VIII,IX,X
Leaky Gut, Dysbiosis, Intestinal barrier, Butyrate, Gut microbiota, Candida overgrowth — I, II, III, IV, V, VI, VII, VIII, IX, X , XI, XII , XIII, XIV, XV , XVI, XVII, XVIII
Zonulin — I,II
C4 complement, cytokines, Interleukin IL-6, Bilirubin — I, II, III, IV, V, VI, VII, VIII
Diet — I, II
TCM — I, II
Herbs, Adaptogens — I, II, III, IV, V
Other — I, II, III, IV, V, VI, VII, VIII, IX
This is literally the image that started it all. Liver and intestine regions on both of my hands were pulsating. Probably the saponins in the beans and unfermented tofu toxins. If I had not been into meditation, eastern medicine, and did not read a book about psychosomatic healing I would have had overlooked it.
And a small anecdote at the end.. I found a beautiful quote in the first season of an awesome TV show, Mr. Robot, and thought of sharing it here.
Most coders think that debugging software is about fixing a mistake, but that’s bullshit. Debugging is actually all about finding the bug, about understanding why the bug was there to begin with, about knowing that its existence was no accident. It came to you to deliver a message, like an unconscious bubble floating to the surface, popping with a revelation you’ve secretly known all along.
My programmer background helped me to find the bug in myself, understand why was it there in the first place, and then fix it. So I did just that.