This post is written under the header for GLU1. It is based on my own personal experience and is my story, in no way should it be taken as medical advice. Always DYOR (Do Your Own Research).
I grew up young and healthy. I had hardly any problems related to my health, and certainly no allergies, immuno, or digestive problems. The only thing I did notice, in hindsight, is that I would tend to fall asleep after eating meals on a very frequent basis, much to the amusement of my friends when we were eating out! I will tie this point back in later in the post.
22 years of smooth sailing, and then things really changed on a dime. I was on a BComm foreign exchange in Lisbon, Portugal and I very suddenly began to experience extreme bouts of panic and anxiety, out of the blue. I certainly had no history of anxiety and was always a very calm person – abnormally calm to most people. Thus I was quite aware of the panic, and although it overpowered me, I knew it wasn’t ‘me’ that was panicking. I also noticed that it would always happen after a meal, which was strange because I had zero dietary sensitivities and a very strong metabolism.
Luckily, this was not my first foreign exchange, so I knew it was not the stress of being somewhere else or even the food. But eventually, this problem became so severe that I was forced to leave the exchange. It was a humiliating defeat for me. Not only was I wearing the badge of the first person at my school to ‘quit the exchange,’ and be forced to have to retake the semester and not graduate with my friends, but things did not get better when I came back to Canada! They got worse …
I visited a couple of psychologists who thought these problems were surfacing because of some trauma that had surfaced on my previous foreign exchange (I was robbed at gunpoint). This was not the case. My family doctor found nothing. Everyone thought it was ‘me’ and ‘my brain’ acting up. But I didn’t believe that was right because I knew myself quite well, even at that age. But the personal humiliation, social pressure, and continuing pain was unbearable and I started to succumb to my vices. At that point in my life, I was a recreational drinker with a habit of playing online poker occasionally. I knew that I had an addictive personality, so I was always careful, but when you hit a low point you will tap your vices to try to remove the pain, and so one fateful, inebriated night in 2008 I maxed out my credit card on Poker Stars and that was my low point.
In a span of 6 months in 2008, I went from the top-of-the-world 22 year old to rock bottom, fighting in a black hole with no blueprint.
By 2013, I had recovered mentally. Between 2008 and 2013, I went through a spiritual journey of sorts. My big breakthrough happened when I stopped drinking beer, but I was still eating gluten every day. During that time period, I was doing very little drinking, no gambling, limiting caffeine intake, and eating a full vegetarian diet, and a plethora of other lifestyle changes. I was very skinny though, and everyone commented on that. And I still had some significant mood changes that were seemingly caused by nothing in particular. My digestion was hot and cold, but I was able to live a normal and fulfilling life. But something still negged under the surface, and …
It blew up in the summer of 2013, five years after it all began, while I was living in Montreal. Suddenly, I was having a full digestive seize-up after almost every meal. I started to suspect maybe it was gluten (I didn’t even know what it was in 2008). I started fasting almost every second/third day, as that was the only thing that would rebalance my body and mind. I was eating a lot of chocolate, my body craved it incessantly.
Then at a wedding in September, having tried to fast all day, I succumbed and ate a piece of bread. Just one piece. And my entire immune/digestive system seized up. My mind was in a state of panic just like what was happening in 2008. I had a chocolate bar in my suit pocket, I ate that and it did nothing. I tried drinking coffee to relieve the pain, that did nothing. The piece of bread was stuck in my system. Literally.
Me being me, I had a reserve bottle of something called RUNA in my hotel room. On pure instinct, and for lack of any other options, I went back to my hotel room and drank the entire bottle. Somehow – and to this day I still don’t know how – I recovered instantaneously after drinking this RUNA. I enjoyed the rest of the wedding and returned home the next day to try and figure out what was going on with my body.
The worst part was that I had a plan to move to London, UK about 10 days after that wedding and my body was in a state of disarray. I booked an appointment with my family doctor. The test for celiac involved me eating relatively large quantities of gluten for three straight days and then doing the blood test. During these three days, I really felt like I needed to go to the hospital. Were it not for the RUNA magic, I would have had to. And yet, the blood test came back negative. My doctor suggested maybe the problem was not gluten but could be something like corn or something similar.
I moved to London in relatively good spirits, but I was concerned about this new gluten challenge. It was causing me significant problems on its own, let alone in a new country where I was living on my friend’s couches. I had to pretend to be ok. The problem certainly didn’t resolve itself, but I progressively learned how to avoid eating any gluten, which was more difficult than it sounds in 2013/14.
My health and mood oscillated between September 2013 and March 2014; on one hand, it was a rush to be living and working in London. On the other hand, London is a very polluted and crowded city, and this was not a conducive environment to a health crisis such as this one. Furthermore, I had no idea what was really going on. Between 2008 and 2013, I had developed an ability to adapt to what I was feeling without taking any supplements or painkillers.
As if by divine intervention, I was about to find out the answers pretty quickly, just not in the way I expected. The next stage began with a Saharan Dust Storm in April, 2014, which effectively took down my immune system. I became extremely sick, and had an unbearable digestive tension that could not be resolved with anything. Furthermore, the panic attacks returned and were accompanied by a large amount of hives, something I had never experienced before.
A few nights before yet another important wedding, the flare-up reached a peak. Things got so bad, I needed to leave a social event and go to the ER. The doctor told me that I had Herpes Zoster (Shingles), which is very uncommon in young people. And he was very concerned about the state of my immune system. He referred me to a traditional doctor who ran a battery of tests, only to find nothing other than a series of vitamin levels that were low (ie. B12) and a series of hunches that were best taken-care by a naturopath.
This is where Phase II of the experience begins. The naturopath ordered a stool sample and some bloodwork (from Cyrex Labs in the US), suspecting that these problems were linked to gluten and some sort of infection in my gut. Dr PR was right!
The test revealed that I had a serious problem with gluten, especially mentally. Furthermore, it had surprisingly revealed that I had ‘MANY blastocystis hominis‘ – a very exotic parasite.
I was a mess! I went on a prescribed protocol of probiotics, GI Revive, EcoBalance, and high-dose Vitamin C. This actually helped quite significantly, but I became subjected to several extreme symptoms that had never previously happened:
- I became very sick from all traditional cleaning products and laundry detergents
- I was very sick every time I went into the London Tubes, and would sometimes have panic attacks. Eventually, I became sick just from breathing the air
- I was having big problems with rancid oils (ie. Canola Oil, Sunflower Oil, etc) and would be very sick after meals with those
- There wasn’t one particular diet that I could stick to. I started to eat fish frequently, but I was not safe from any group of foods
As a result of all this, with the long-term in mind, I decided to leave London for a while in July of 2014, about 10 months after I had arrived there, and head back to Canada.
Before I talk about the next phase of this journey, I must explain who I am as a person.
I studied Biochemistry for two years. I was probably born to be a biochemist, but I couldn’t stand the way it was taught in school (so dry!) and I didn’t see myself becoming a doctor, so I quit and went into business school. Between the year I quit Biochem and went into Business, I had helped start a very successful painting company called Tomorrow’s Tuition. This gave me the confidence that I could one day become an entrepreneur.
So coming into the Fall of 2014, I faced a problem that seemed to be a direct mix between Biochemistry and Entrepreneurship when my gluten problem became a bigger problem despite the clean air and relaxed climate of Canada. My gluten problem became debilitating when one day I realized that I was sensitive to molecular amounts of gluten. This was my breaking point.
I would get sick if there was so much as a bread crumb in any dish, or if the food had contact with any trace amounts of gluten without being prepared properly. I had already been through the song and dance with the doctor of testing for celiac, and through my own research had learned that the medical consensus behind celiac was ‘we don’t know what causes it‘ and the only thing you can possibly do is not eat any gluten.
To me, as a young man in my late 20s, this was totally and completely unacceptable. Was I expected to live out the rest of my life, never being able to eat out without being in a panic, because the mainstream medical community didn’t know what the causative factors of celiac were? How is it possible that many people don’t get better when they remove gluten from their diet.
1 + 1 does not equal 2 with celiac
Furthermore, if I did go to speak to anyone in the mainstream medical community, they would question whether I had celiac. Maybe it was Crohns? Maybe I should get the biopsy? Maybe I should get the 23&Me DNA test to see if I am predisposed to either condition?
To me, all those arguments missed the fact that I was sensitive to molecular amounts of gluten. I couldn’t eat out. I couldn’t really eat normally period. I had so many other symptoms that I doubted gluten was actually the cause of my problems. So I decided to approach this as an entrepreneur – without telling anyone.
2015 – Don’t Try This At Home
Why didn’t I tell anyone that I was about to embark on this experiment to prove the medical consensus of celiac wrong and fix myself in the process?
- It’s Dangerous – and that’s why I wouldn’t recommend anyone try it on their own
- Social Expectations – despite the fact that more and more people in our society get sick with progressively more debilitating illnesses, it’s socially unacceptable to embark on such a path. Those expectations would keep someone like me from being able to experiment without giving real-time updates
- It’s Messy – there are so many unpretty elements to the process, and I knew that going in. By preserving privacy, I gave myself space for the messyness that nobody wanted to hear about
But I didn’t begin this process without doing my homework. By chance in 2013, I had stumbled across an article in NewYorkTimes magazine that really inspired me:
The article featured a medical trial by Dr Kari Nadeau on children with severe allergies. The gist of the trial, which ultimately proved successful, was that you could gradually retrain the young child’s immune system by feeding them whatever they were allergic to.
The major difference between something like a peanut allergy and molecular gluten sensitivity is that patients with a severe nut allergy will see a massive surge in IgE (Immunoglobin E) and go into anaphylactic shock, thus requiring an EpiPen to treat the condition. The gluten problem, which many commonly refer to as a gluten allergy (correctly or incorrectly) is different in that it doesn’t trigger an anaphylactic reaction, it triggers an autoimmune reaction. The gluten particle gets stuck in the patient’s system because the body cannot properly synthesize the gliadin protein. The small intestine is triggered and effectively the body shuts down. The pain is unbearable, and most celiac patients are required to go to the hospital in order to treat the condition.
I had used to RUNA for a couple of years to help me whenever I had gluten, that was my clutch. But in 2015, that began to lose its effectiveness and I was having significant problems with anything caffeine-related. I was traveling between Canada and London for work, which actually helped me quite a bit because I was constantly changing my routine and thus identifying small sparks of inspiration.
I had been using DPPIV as prescribed by my naturopath, but that had limited effectiveness and my reaction in mid 2015 was still really bad to even molecular gluten. I made my first mini breakthrough in mini 2015 via papain, which I would ingest prior to eating any meal, and that helped significantly. It was a very brutal first 3/4 of 2015, but I had a small ray of hope. I was committed on going all the way on this though, there was no going back, I couldn’t live with molecular gluten sensitivity.
Blasto & Histamines
In September of 2015, I couldn’t eat anything, I couldn’t move, and I was sick! In fact, I had noticed that I was getting sick anytime I traveled, meaning my immune system was super weak. That’s when things spiraled out of control …
And I realized that this was THE PARASITE. The hallmark of this particular parasite would be a brutal set of stomach problems, and then the panic, dark thoughts and anxiety that I had in 2008.
http://www.badbugs.org/ (Informative site about Blasto)
Remember that above I had tested for ‘MANY’ Blastocystis Hominis, which I soon began to realize is a VERY difficult/adaptive parasite to deal with. I have a pretty strong feeling of how I got this parasite, which I won’t explain, but it tends to mainly affect people in Australia or Carribean islands. Because there is a natural amount of this pathogen in the gut, it tends to be dismissed by experts for the many people that are affected by it. This is furthermore complicated by the fact that it is difficult to catch and can create many different symptoms; it adapts itself to its host. I knew after I started researching that this particular element was what had affected me the most:
This opened up several possible lines of investigation for me. In addition, H. Zoster came back at the same time, meaning my immune system was chronically being weakened by this parasite. This was a truly awful and dramatic time in my life because I couldn’t really eat anything or socialize with anyone. But I persevered.
To deal with H. Zoster I used olive leaf extract and cayenne, quite successfully, along with a lot of natural anti-virals. To deal with the parasite, after doing a lot of research, I used diatomaceous earth and raw honey. There was a recommended cocktail of pharmaceuticals that I avoided even thinking about because of how weak my immune system was.
By December 2015, I was back to a decent level of living and was even traveling for business. As bad as the experience was, it opened-up three very important lines of investigation for me to tackle this problem:
- Serotonin and Panic Attacks – I had realized that since 2013, I was having significant mood changes and the odd panic moment. Dating back to my 2008 experience, it was clear to me that it was this parasite that was the causative element. Furthermore, because I used to always fall asleep after eating gluten or drinking beer, I could see a link to the Tryptophan > Serotonin > Melatonin pathway;
- Immunotherapy – I started investigating several high-powered supplements that I could use to bolster my immune system. This included things like astragalus, ginseng, etc. I also had to be very careful with eating sugars, which feed the parasite. This is what I believe to have tripped out the parasite and kept the virus alive, was eating too much sugars. I was having large sugar cravings all the time in 2015, so by cutting out sugars and boosting the immune system, I would be addressing one of the core issues in my body;
- Mast Cells & Histamines – the discovery of Mast Cells was something that I had never heard of until learning about the Blastocystis mechanism of attack. This led me down the path of studying histamines, which I had begun to realize were a massive problem for me. I started to cut histamines from my diet (limit caffeine, study high-histamine foods) and that was a big boost for me.
I also, at this point discovered the importance of the B Multi-Vitamin. Particularly B6 and B12. During this dramatic period of time, I did have a very helpful naturopath named Dr. J who helped walk me through this. I credit her for the discovery of the histamine issue for example. I was not completely alone during this process thank god!
I ended the year 2015 feeling lucky to survive but having a new set of leads to tackle in 2016. I was, and still am, convinced that Blasto was the causative factor in creating my gluten problem. The Blasto parasite loves to feed on gluten and carbs, so it wasn’t just gluten that I needed to curb, but as many grains as possible.
2016 – ResV Baby
Given that 2015 was so awful, I had hoped for a better outcome in 2016. I could write a novel about 2016 alone, but let me paint the picture of what this year looked like:
- Suitcase Full of Supplements – I would have half supplements and half clothes in my suitcase. I was experimenting across many different dimensions because I still had multiple dimensions of symptoms – mental, digestive, physical
- The ResV Breakthrough – my first major breakthrough came serendipitously while on vacation, when I accidentally ingested a large portion of gluten but had ResV on hand
- Eating Socially Again – this led to me enjoying eating out with a relative degree of comfort for the first time in many years
Let’s start with Part I. While I had controlled the major symptoms of my parasite, by reducing the amount of histamines in my diet and limiting sugar, I was still a mess on many levels. Physically I was quite weak, digestively I still had a lot of symptoms, and my mental performance was still dramatically lower than years before. I found it difficult to socialize, I would get quite depressed if I ingested any gluten, and I had difficulty putting together any outlook for my life. So I went into a full-throttle supplement experimentation mode.
I will *asterisk this because I must discuss the financial impact that this decision had on my life. I felt intuitively that I didn’t have the luxury of time to wait for this problem to solve itself, I needed to act in the window of time that I had. I subsequently started spending hundreds, even thousands, of dollars every month on supplements for years. For example, my pancreas felt dramatically weakened from this experience, the histamine issue was clearly affecting my liver, and my immune system needed a full boost. I started to open the floodgates on Glutathione, Alpha-Lipoic Acid, Quercetin, Resveratrol, CBD, and literally hundreds of other supplements over the years. Needless to say that as an entrepreneur living on the road, I was burning through cash that I didn’t have!
It paid off in June 2016. I went to an all-you-can-eat sushi restaurant in Waterloo, Ontario, Canada where I was living at the time. The strategy there was to live outside of an urban centre for a period of time. At this time, I had small amounts of supplements in my pocket that I was testing. It started with papain, but now I was testing Mint+Resveratrol (ResV). I preloaded (ingested it before I ate) and of course, by mistake, I was served sushi with tempura inside (contains wheat flour = gluten), that I wasn’t aware of. This is why this disease is debilitating. There is a constant fear this could happen at every meal outside of a fully-sanitized area. Miraculously, the ResV + Mint preload saved me from any pain or discomfort for about 10 hours, until the very last phase (release) of the gluten from the small intestine, which is the most brutal. But this was a miracle. My only symptom in the 10 hour period was being very sleepy at one point, and needing a nap (#tryptophan #serotonin #melatonin).
That’s when Part II links up to Part 1. In August 2016, I was on a holiday on the East Coast with my family. It was my first real holiday in about two years, as previously I didn’t like being in any remote places with groups of people where I didn’t have my own space and access to a wide variety of foods. I rolled the dice on this one. All was good, until I accidentally ate my first large dose of gluten in two years. I felt like I needed to go the hospital. I couldn’t think, the pain was unmanageable, and I was panicky. There was no way I could sleep. Luckily, with mah-suitcase-fulla-supplements, I high dosed on ResV and that was a miracle. It knocked out ALL the emergency symptoms immediately. It took me about two days to fully process that amount of gluten through my body, as it tends to move down the immune system in small waves so as not to over-burden the immune system. The ResV was like an aspirin, taking away the symptoms but doing nothing for the actual cause.
This was a miracle in many ways. My research around the possible biochemical mechanism for this was in relation to Mast Cells:
The study above, conducted in Charlottetown, PEI, Canada does offer some possible explanation as to why this worked for me. I continued to test it, and it continued to work. I began ingesting a small amount of ResV before each meal, and wow! I could eat out again. I had to be careful, but it removed the molecular gluten risk from my life.
My research suggests that the major risk for ResV is to take it too frequently and in too high of dose. So I didn’t take this every day (which required some planning) and if you were to take ~5g of ResV you would nuke your kidneys. ResV is, in general, used for the heart because of its anti-oxidant purpose. There is a lot of research on this supplement, mostly found in grapes, because of its potential across a wide variety of conditions. Always #DYOR (do your own research) and consult with professionals before taking anything.
This was a miracle for me, as I was able to eat out with people again. The psychological boost from this alone was massive for me. But I wasn’t done. I wanted the whole thing, I wanted my life and health back. Full stop.
A Little Help From My Friends
Imagine going from 0 – 22 years of age at the top of sports, school, and pretty much everything. You go on Exchange, a rogue parasite sets you into random panic attacks, you lose EVERYTHING because you no longer have the same confidence, abilities, health or support that you did before. I lost my languages (Spanish, French and Portuguese) because that part of my brain was (for an unknown reason) greatly affected, and many times I struggled to socialize during years 22-31 because everything in my life was in a constant flux with no discernible storyline. An entrepreneur? A nomad? You live in Canada? Or London?
Saying hello to the facts of this disease was not easy for me. I was embarrassed, ashamed, and quite frankly lost on most days. I had no end game other than a hope and a prayer that I could somehow crack the biochemical code on this. In this sense, I had to make friends in strange ways and just accept the jagged road in front of me. My 31st birthday was a lucky one for me, given that my lucky number is 13. I just had a feeling on this snowy and blustery day in Waterloo that I could do it if I had a little help from my friends.
The boost I got during early 2017 from my earthly friends was important, as they said ‘you look better‘ and my energy was better. But behind the scenes, I was still getting knocked down every time I ate grains or there was a moderate quantity of gluten in my food. I needed help from my friends above, a clue of some kind.
Given that I had zoned in on grains, I started to research phytic acid/phytates, as that seemed to be what was paralyzing my system each time I ate grains. I wouldn’t have discovered the relationship between Vitamin C and phytic acid if I didn’t have a little hand from above. It is a relatively obscure connection to be made. I started to HIGH DOSE Vit C and that was a rocketship for my life. Everything across the board improved dramatically. Vit C is also an anti-histamine, so I was able to start intaking more caffeine after this. This was a BOOM!
Phytic acid is an anti-nutrient found in grains, beans, and nuts, and it’s not good for your body, particularly your mineral absorption:
This is the second major boom. I was supplementing magnesium, calcium, zinc and many other key minerals. I did a hair mineral test and the results were off the charts in so many ways. This effectively fixed a lot of those problems. I began to get significantly stronger after this boost. I felt on fire. My gluten-sensitivity was diminishing as well. But there was ONE MAJOR SIDE EFFECT from Vit C.
High-dose Vitamin C will exponentially increase your production of oxalates (Oxa). Vit C breaks down to form Oxa. For me, if Phytates are the devil, then oxalates are the full hell.
What are Oxalates?
They are fine in a small quantity, as they help with your metabolism. In large quantity, they can wreak havoc. Oxalates are what cause kidney stones, for example, because they strip mine your body of calcium. They are an O2- particle that will bind to particles like Ca2+ in your body. They are another anti-nutrient that causes malabsorption of minerals. But in the case where they are overloaded into your body, they are VERY difficult to remove efficiently and cause ‘oxalate dumping,’ which can manifest in a number of different ways.
Oxalates had such a profound effect on me that I started to think that there was something causative in relation to my core gluten condition, whether it be celiac or otherwise. Here is an excerpt from an expert on the subject:
This is an extremely well-researched article that originally appeared in a respected Journal, and both through my own personal experience and biochemical research there is a BIG CONNECTION here that warrants much more investigation. To regulate oxalates with supplements is a difficult game, I will come back to it after we talk about serotonin.
After I seemingly crossed some kind of threshold of oxalates from high-dosing Vitamin C, I started to have problems sleeping for the first time in my life.
The Tryptophan > Serotonin > Melatonin pathway is very complicated, but the connection between gluten and the depression-like problems (Serotonin) that I suffered, and then suddenly having sleeping problems (Melatonin), was not something I could ignore.
The answer to my Serotonin problems came unexpectedly from Dr. PR on a follow-up visit. I will leave this part short because there is a lot of research being conducted on the subject, but certain strains of probiotics in the gut have a big effect on the synthesis of neurotransmitters (ie. Serotonin, Dopamine, etc) that are delivered to the brain:
For me, the difference-maker seems to be Bifidobacterium Lactus. This discovery was made for me in February 2018 and my mood, energy, and digestion have been much better since. Combined with continued histamine regulation and B6/Zinc supplementation, I was sleeping much better after this!
PULLING THE THREADS TOGETHER
Millions of people suffer from this problem and its related diseases. I’m not here to argue around semantics and the labels of each disease. My life was thrown off-kilter by a rogue parasite, then I made a comeback, then I was devastated by whatever condition gave me sensitivity to molecular gluten and a failing immune system.
I took this on as MY PATH. There was no voodoo, Tony Robbins, or experiments with pharma drugs. In fact, I didn’t take a painkiller once over the last 9 years, as I believe that painkillers are awful for your organs and in my case my body was under enough pressure as it was. I believed in myself and my dual background as a biochemist and entrepreneur. I swapped out my Poker Star habits for a game of high-risk poker with the universe to try and solve this crippling and debilitating problem for myself and others. Why are my writing this now?
Because over the last several months I have begun to feel MUCH BETTER and in the last few weeks I have eaten multiple slices of Sourdough twice. This isn’t a scientific journal article with reams of data, it’s a story of my life. Three years ago, if I had listened to the consensus, I would have believed I may never eat a piece of bread again and will more than likely develop another illness like diabetes or cancer on top of this. In my 30s. The fact I can eat full pieces of bread, with only relatively tame amounts of discomfort, is a MIRACLE!
How did I do it? On a very gluten-specific level, this is what I do:
- Preload – with Olive Leaf Extract; to be honest, I have no idea why this works, merits more research
- Post Eating Gluten – depending on the severity, time of day, and other foods ingested
- Mint Tea – avoid caffeine and cacao, in particular, drink mint tea to help open the small intestine
- Calcium/Resveratrol – the calcium channel seems to be heavily affected by this reaction; when combined with Resveratrol, Calcium is sometimes enough on its own to purge the gluten
- Wild Oat Extract – I use Dopamind by Life Extension, I believe this hits the Tryptophan/Serotonin axis
- Olive Leaf Extract – continue to take this in
- Selenium/BroccoGen – my conclusion is that Selenium is the best possible supplement to affect the Oxalate pathway, which is best received through the BroccoGen supplement (broccoli has selenium) because you can high-dose Brocco-Gen but NOT Selenium
I believe that there is a link between Selenium’s activity in relation to Glutathione and other anti-oxidants, and these elements are CAUSATIVE in relation to this condition. Combined with malfunctioning B6 Folate levels, as evidenced from the article cited above:
In terms of overall, day to day eating, I:
- manage histamine levels
- intake as many anti-oxidants (blueberries, cherries, etc) as I can
- strategically balance in espresso (given that it is high in oxalates and histamines) because of its effects on the brain and high Manganese levels
- limit grains and sugars
- eat raw honey, which is a powerful anti-viral, anti-parasitic compound from nature herself
- learn to accept pain as a guide without taking painkillers
B9 • Cytochrome P450