My Detective Work


“Detective” work in Europe and the results are amazing!

This is going to be a long post so let’s see how many of you will read it all.

I spent the last 4 months in Europe, mainly in Italy, and since I am now back in Singapore it is a good time to analyze those days.
I arrived to the cold Europe at the end of the November and I honestly don’t remember much about the first week. Terrible brain fog all the time, and those of you who have some experience with it, know how it can be. Of course I had the jet lag which also seemed to bother me a lot, but was that the only reason why I was sleeping 12 hours a night? I don’t think so.
When I had managed to get my energy levels a little bit up, it was time to book some appointments and see doctors.  I needed to know why I was feeling so ‘sick’ all the time. Light fever, brain fog, shortness of the breath all the time, cough, painful eyes, headaches, diarrhea, dizziness, various pains etc. and absolutely no energy. I had counted that I had about 2-3 hours a day so called ‘active time’ when I managed to do something before I crashed.
First doctor I saw dropped my changes of getting the diagnosis fast. ” Ok, listening to your symptoms and reading the list, it could be anything from leukemia to rheumatoid arthritis, so let’s start doing some testing”. And so I did. Well, I am going to save you with the details what I did, but I just say that I did all together 4 ultrasounds, and a lot of blood tests. Including some genetic tests (blood) as well, which came back negative for JAK2 V617F and other genes related to some leukemia. And the only thing which was worrying in the blood tests was high platelets, (platelets had been high for years, but I was always told that it is because of my ulcerative colitis) and there were some minor issues with red and white blood cells and these values were chancing all the time during the next 4 months. The last blood tests I did before coming to Singapore were good, except the high platelets count. So everything was pointing to some kind of blood – related issue, but nothing was found. We have some hereditary blood diseases in the family, but all my tests for these were negative.
I also visited a new Dermatologist. Those who know me well, know that I have had some serious skin issues during the past couple of years, and I have spent thousands of euros for trying to resolve my issues. 5 minutes at the doctor’s office and I got a diagnosis with 95 % accuracy for Rosacea. And after a long googling we found an antibiotic I agreed to test. Well the antibiotic of course gave me almost immediate side effects and I managed to take only two doses, but surprise surprise it seemed to have an effect on my skin, and after that I haven’t had any skin issues; meaning no terrible pus filling nodules growing in my face. Sorry, but there is no way to say that nicer. I am not posting the pictures here, so you don’t need to see those weird pimples. So, one huge issue resolved. ( since this was in Europe I am still waiting to see if something in Singapore is a trigger for my skin issues, but so far everything is good) The antibiotics left me with even more diarrhea, stomach bloating and pains, but I knew that this might happen.
Christmas present for myself was a Genetic Sulfite Intolerance Panel. The test kit was similar than those which are used in CSI and other crime series, so I felt really excited while doing it. I have done the 23andme test and from that I know that I have mutations in those SUOX and CBS genes which are under the Sulfite Intolerance profile, but as most of you have noticed I am a bit obsessed about sulfites and I NEED to know everything about them so of course I couldn’t skip this test either. And the test just confirmed my Sulfite Intolerance. When I showed the report from the genetic lab to my family doctor, he was like oh damn, this really is a serious thing. Well, it was he who gave me the details about this test already 4 years ago, when I saw him for the first time after the anaphylaxis from the New Year’s kiss with sparkling wine. So this moment was also kind of closing for this sulfite stuff what comes to testing. My doctor just said me: ” I know that you know better than I how to handle those issues, and use the cortisone only for the really serious symptoms.”
I had spent the Christmas with the terrible brain fog. I fainted during the Christmas day, and luckily I understood that it was a time for a cortisone shot. My energy levels were really low and I was thinking of going to the ER, but then I was also thinking that what they are going to do for me there ? Anyway, I can’t take any medicines and even the smell of the antiseptics at the hospital would make me feel worse.  The days went by and I didn’t get any better. I had like million of different symptoms all the time and I prefer to stay at home. It was kind of survival game. I did only those things during the days which I felt were necessary to do and the rest of the time I spent in the bed or outside with the goats.  I had planned so much writing during my stay in Europe but I didn’t manage to do much. I wasn’t doing anything I had planned and I felt terrible also because of that. Then I had a terrible shock when I found our goats killed by the wolves- the confirmation about the fact that the wolves had done it came only when I saw four wolves myself. That was too much to handle for me and I decided to spend the next month in Finland, hoping to clear some of my brain fog.
Again, it was awesome to spend some time with my family and see some of my friends, but the damn brain fog didn’t leave my brain and all the other symptoms were mostly the same than what I had when in Italy. I did have more urinary track related symptoms though and I thought in one point that I need to see a doctor, but luckily some supplements seemed to resolve the issue.  I often joke with my little sister that we can easily know how well I am from the toilet paper consumption. Or how many times per night I need to run to toilet.

My health was quite stable the whole time, but I did got a weird stomach bug, which kept me 6 hours in the toilet. Luckily my sister and my brother in law have built a big house so they have three bathrooms. The kids were checking on me all the time: knocking on the door and asking if I am still alive. No one else got any symptoms, so I blamed the bottled water for it, since I was only one who drank that. After that I switched to the boiled water and didn’t got any symptoms from the water anymore.
The Finland trip confirmed the fact that I still react when certain type of wood is burnt. I have also a wood burning stove in Italy and I found that burning the wood made me feel feel sicker sometimes. So the sulfur from some type of burning wood was still an issue but since my sister was also getting some symptoms I thought that this was pure sulfur thing. Since our parents are heterozygous for the CBS SNPs we kids have gotten various mixes of those genes.

Food wise it was a pretty interesting trip, but luckily no bad reactions. Most vegetables tasted funny and weird, like tomatoes tasted just like fish. The potatoes my father grows are something I can eat without reactions, so it is always a potato-feast for me when I am there. Of course I am also helping my sisters and mum to empty their freezers by eating all the berries. My sister gets raw milk directly from the farm and we had a lot of fish my father had caught and game meat hunted by my father and brother in law. So even though I had super healthy diet, I wasn’t symptom free. Oh, and the mold. Mold is a big issue for me in Italy, but it is also a huge issue in Finland, and it is almost impossible to avoid it. And I was smelling mold in various places and persons and every time the exposure made me feel sicker for the next couple of days. (of course there is mold also in Singapore, but that’s an other story)
I was back in Italy and had some more doctor’s visits. Again nothing new. The platelets had decided to stay up and the other blood cells had decided to play around and go up and down as they liked. I de-wormed myself, because I was starting to think that maybe I had gotten AGAIN some parasites. I was also taking an online course about the parasites at the same time so I was comparing my symptoms to the parasites which were taught during the course. (no match by the way, if you are interested to know).
I was also starting to spend more time outdoors, the fear of wolves had kind of disappeared while I was in Finland, and I was enjoying the beautiful countryside.  I had gained some of my energy back while in Finland ( which of course made me think what was the difference between the Italy and Finland, if it is not the mold so what it could be ? ) and I managed to do some work around the house and that involved also cutting the trees and it was from here when I started to get some more serious symptoms again. I couldn’t believe that it was happening again, just when I had thought that now I was getting my energy levels a bit better and again I am starting to feel sicker. Why ?  I was using a lot a wood burning stove and I was burning different types of wood in it and every evening I didn’t need to wait much to fell a sleep, it was like a knock in the head every time, and again I was sleeping 10-12 hours a night.

Then in one Sunday afternoon I was about one meter from a FRESHLY cut small Acacia tree ( I didn’t cut it myself) and my abdomen started to grow in front of my eyes. It was an immediate reaction, like one nano second and boom. A few more minutes and I had various pains everywhere in my body and I started to feel this smoky cloud entering into my brain and filling it fast.

I know that I should stay away from all legumes and many plants like Acacia tree or Mimosa flowers, since these are also from the Fabaceae/Leguminosae plant family, because I have reacted to most legumes my whole life, but sometimes you just forget these things . And I had just imprinted it deeply into my mind that I was just allergic to them in really weird way. G6PD deficiency is something I have been tested for more than 10 years ago, but since the test came back negative I was told that I don’t have it, or I don’t have so called Favism. My brain was trying to make sense of all these things and I knew that I need to know more. But in the following days I managed to do only a little bit research about G6PD deficiency. I run the Livewello report for G6PD deficiency and I saw that I do have some homozygous mutations, and even though my symptoms weren’t matching exactly on those for G6PD deficiency,  I was still thinking that I am on the right track.
And the next week was a pure nightmare. It was colder and I needed to burn more wood during the next days. I was again really low in energy and the brain fog was really bad. I spent the week wandering around like a ghost, I took a lot of activated charcoal hoping it would help me clear the brain fog. Nothing- nada. The cortisone shot was nicely placed on the table. I knew that I was going to need that soon. Cortisone seemed to be the only thing which made me a human, at least for a couple of hours. I am a Ski jumping judge and I had an assignment in Norway in a couple of days and I knew that the trip wouldn’t be possible unless I take some cortisone.
Sunday 8th was the International Women’s Day, and I posted in my FB group that this is a day when I need to be aware of sulfite -loaded sparkling wine and Mimosa flowers so better stay home. Both are traditions in Italy for celebrating this day.  And so I stayed at home. The next day I needed to do the shopping, and between running from one shop to an other one I needed a coffee. Big mistake. Immediately after I had entered to the coffee shop I started to feel my abdomen grow bigger and bigger and weird enough, the pain started at the same time, normally it takes at least 10 minutes to the pain to appear. I turned around and saw a vase full of Mimosa flowers. Damn, not again. But since I know that coffee somehow helps with the reactions I got my coffee outside. Of course the girl in the coffee shop was feeling bad, (I am regular in that coffee shop so they know me) but I told her that it is not her fault, this is just how my life is. I was feeling again really sick. I looked like I was pregnant with my big belly. I still had a few more places to go, and of course also one of these places had some Mimosa flowers, so I needed to ask the things from the door. In the super market the person before me at the cashier had some shrimps and that smell made me even more nauseous. What the heck was going on because I was super sensitive again?  Somehow I managed to go home and finish the packing for my trip.
For me traveling, specially when I am taking the plane, means a lot of good planning and organizing. I do travel a lot so I am also used to it, but this time the new challenge was that I was flying for the first time with KLM and I had a transit at the airport where I have never been before. For someone else this is not an issue, but for me it is. Of course I had checked with the airline that there are no peanuts on the board, but that obviously doesn’t mean that there is not something else I might react. The airports can also be tricky, due to their air conditioning, if and when they circulate the restaurant’s air  in common places like it used to be in the Munich (GER) airport where I have had one anaphylactic shock reaction.
Unfortunately that trip didn’t started too good. Already at the airport I was hit by an other reaction, this time it was the naphthalane in the fellow passenger’s clothes and luggage. ( those things were kept in mothballs for sure)  And this reaction should have made the bells ring in my head but it didn’t. Then in the airplane, the person on the other side of the aisle was smelling really musty and moldy, and I needed to use my face mask. I was getting curious looks from other passengers, but I am so used to it that I don’t care anymore. The airplane was old, so was the air conditioning and the air was really dusty and what I think also moldy, since I got blood shot eyes in about one hour time, and that happens often with the mold. I was chewing terrible tasting cortisone tablet and thinking that this is going to be an interesting trip. The cortisone shot I had taken in the morning wasn’t enough.
Next morning I woke up with a light fever and terrible headache. More cortisone and pain killers and I survived that day, even the evening in a place were wine was served. But I did stayed away from the people who were drinking, and I was happy that I was able to spend some time with my friends. Luckily the hotel was excellent and the rooms were clean and nice and the food choices were amazing, even for me with my allergies and intolerances.  Next day was full of events and after a huge breakfast and an other cortisone shot and more painkillers I was ready to work.  We spent the next 12 hours at the Ski Jumping Stadium and I have no idea from where I got the energy to stay in my feet the whole day. Probably the fresh air was helping and the fact that I managed to get a nap in the Judge’s room during a break, and I can’t also forget the magical powers of cortisone. Back at the hotel and and I had some dinner and my head was hurting so much that I was hardly able to speak. It was a few hours of sleep for me and I was back on my way to home. The flights were quite awful, my headache was so bad, that I wasn’t able to move my head and I was afraid that maybe I had caught some infection. I have no idea how I managed to drive home from the airport.

At home I ate a little, crashed to the bed and slept 3 hours. I woke up, ate again and went back to the bed and slept other 15 hours. Next days were pretty similar. I got up, mostly because I needed to go to the bathroom, I ate some breakfast, I spent some time in the internet then I needed already a nap. I woke up for lunch and browsed through Facebook, after that it was an other long nap before dinner and then it was time to go to the bed for night. First I thought that this was a flu, I felt so terrible and since I had a feeling of sore throat I took some licorice.  I think I was totally two weeks in bed, and I had only a few clear moments during those days. I did took some cortisone and it gave me energy to do some things around the house, but nothing else helped me like previously, and when I say nothing else, it means my supplements which I use and which have helped me so many times before. The headache lasted for almost 10 days and even though that wasn’t even the record those were really terrible days. Only after the headache episodes were over I was able to concentrate more to the research around the G6PD. And what I started to find out left me without the words. Even though symptom wise my symptoms don’t match exactly, ALL the things from food to medicine and other substances which were on the NO list were those I was reacting. Every single one of them. And with most of them only the smell would give me violent reactions and knock me out for days. Of course I haven’t been taking all of the medicines which are on that list, but those which I have used have made me feel worse not better. First there was the ibuprofen. I had been taking ibuprofen based painkillers for my headaches all the time. Also during the last 10 days. And when I saw the mesalazine on the list, I was in shock. Mesalazine is the active ingredient in Asacol (there are many other brand names as well) which is used for ulcerative colitis and I had taken that for years in the 1990’s after my diagnosis. It never made me feel better, actually much worse and the doctors told me that if I don’t take it I will get the cancer. Luckily I had stopped taking it in one point, but now I was starting to understand why I have been so sick all the time.

Food wise everything was making sense. I had taken licorice for my sore throat, and that’s also a legume. I am Finnish so I guess I got the taste for licorice and salmiakki when I was still in my mum’s belly, and it has been always the one thing from the legume family I was tolerating, or I thought I was. Soy. Even though I do avoid soy, I know that there are some traces of soy in some of my supplements, and those should be allergen free= proteins are removed, but this is not an allergy this is an enzyme deficiency. And I had been taking these fish oil capsules daily, which did contain traces of soy. So I read all the label’s of my supplements and checked any beauty products if I had missed previously some soy based ingredients. This wasn’t an intolerance issue anymore, now I was fighting for my life, or at least it felt like that at that moment. Ascorbic acid, artificial, made in the lab. This was one of the things I was taking daily, and huge amounts in some days! I had found GMO free, non corn source of vitamin C, and I was so happy back then, because I was able to take it and I thought that I was helping my histamine issues this way. No more ascorbic acid obviously.

Part of the wood I had burnt in the stove was acacia, so after this I burnt only the other type of woods. So practically I had been poisoning myself daily with the acacia wood, no wonder I always felt worse on the days when I used the stove most.
Then I saw the Henna on the NO list. I had bought a high quality organic henna, just that I hadn’t find a moment to do it, I had been so sick all the time. Lucky me, in this case because I have no idea what it could have done to me. ( And yes Anna, I thought about you right away- you were right!)
But could avoiding these things, change my health? My whole life?  I am still trying to figure that out. And I am hoping that this was the last missing piece in my health puzzle. I am feeling so much better and different that I can’t believe it. Every morning I wake up, I am like hello head, your are not fogged right? I have noticed that I need less sleep and I still feel great in the morning. I don’t need to go to the bed with the sun, I can easily stay up later and still wake up energized in the morning. The weird fever is gone and no more headaches, not even during the flight, which used to be the norm for me. I didn’t noticed any nasty jet lag symptoms either, which is good of course.
No pains, no diarrhea, no bloating, no other food reactions, even my eyes are feeling better, and I had constant pain more than a year in my eyes and most of the time my eyes were also red. I can concentrate better and I have energy to do things. Honestly, this feels a bit weird, in the funny way.
Added sulfites, like those labeled E220-228, E150b and d are also on the No list for G6PD deficiency. I have been avoiding sulfites since 2011, but if I look back to my reactions before that, the worst reactions have been when there has been a combination of these two: legumes and sulfites. Probably the worst reaction to the legumes was about 10 years ago when I happened to check what was boiling on the stove and that was a legume soup. Just the cooking smells gave me the reaction. I slept for three days.
Now I have started to do more research regarding the G6PD deficiency and I am hoping to figure out if there is a connection with my high platelets as well. From Wikipedia: “Glucose-6-phosphate dehydrogenase deficiency is an inherited, X-linked, recessive genetic condition. It affects mainly red blood cells, and a defect in the G6PD enzyme causes red blood cells to break down prematurely. This is called hemolysis. Red blood cells are those which carry oxygen from the lungs to tissues throughout the body. And some of the symptoms are fatigue, paleness, jaundice, shortness of breath, rapid heart beat, dark urine.”

Curious fact is that NAC-N-acetyl cysteine is helpful for the G6PD deficiency, but it is also on the list to avoid or limit with SUOX/CBS mutations. At the moment I seem to be just fine with NAC, but I am taking all the SUOX/CBS supplements as well and of course I am counting my weekly sulfur intake, which seem to be a key thing for me to keep those pathways working.

Enzyme deficiencies are much bigger thing than we actually think. For sulfite and histamine issues I have found helpful amylase and pancreatin enzymes. Good digestion is one key element as we all know and the health begins in the gut, so if you have done all the possible repair work in your gut and you are still not seeing any results, have you tried adding any digestive enzymes? Just wondering how many people are suffering from different digestive enzyme deficiencies like not producing enough amylase, protease or lipase and blaming all the possible foods for their symptoms, when it is not actually the food’s fault but it is the body which can’t produce the needed enzymes to break down and digest the food.
Then there are the food enzymes which are present in all raw foods: animal and plant products. For instance raw milk has living raw enzymes in it, thanks to lactase, lipase and phosphatase you are able to digest it better than the pasteurized and homogenized milk. I think this is also why I can drink all the raw milk I want without getting any symptoms.
Then we have the metabolic enzymes which have some important tasks like purifying the blood, and helping the body to absorb oxygen from the blood. (how big part the G6PD enzyme has here ?) The metabolic enzymes also aid in the production of the energy and they are needed for various chemical reactions in the body. Enzymes also break down toxins, help with detoxification etc. Metabolic enzymes are needed to various biochemical reactions, without these enzymes the body wouldn’t be able to function. Those with sulfite issues know how important it is to take the right supplements to the SUOX/CBS combo to keep these enzymes/genes working. Now I need to figure out what I need more for the G6PD enzyme.
So, since the enzymes are so important to a healthy human body, even minor changes in those enzymatic pathways can make a huge change in overall health.
I am interested to hear how many of you have got help from various types of digestive enzymes/raw food?

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2 thoughts on “My Detective Work

  1. tiiu73 Post author

    I have some issues editing the text. It doesn’t allow me to separate the chapters. I will work on that, but I will also leave this original post here, so you can read it while I am trying to fix the issues.

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  2. Sue Weible (@shavarra)

    You know I have always had issues with all legumes .. the reactions are almost worse than my sulfite ones. I get horrific muscle contraction that takes almost a full month to clear. Wonder if the G6PD is a missing link for me as well. It absolutely increases my pain issues because the muscles tighten in a major way without any release for at lease a full month.

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