Brain fog, frequent headaches, migraine (especially after exercise), itchiness (after exercise), irritability, hunger pangs within a couple of hours of eating, severe menstrual cramps, bloating
Phase 1. Gluten free diet trial
We went gluten free for 2 weeks then reintroduced it for 1 day. After about a week I felt noticeably higher energy levels and clarity in my thinking. When we started eating it again these symptoms immediately returned: irritability, bloating, hungry less than 2 hours after eating, brain stuck, can’t make decisions, routine tasks are stressful, low energy and motivation, slight constipation. Other symptoms that we highly suspect are related to gluten are: dizziness, headache, pain behind eyes, joint pain, itchy skin, needing to clear throat, shoulder pain, eyelid fluttering, fatigue, lack of focus.
We did not notice any immediate or obvious change in my partner other than a great reduction in gas when gluten free.
I felt such a huge difference in my body and mental state that the previously unthinkable happened. I never wanted to eat wheat again despite my love for pasta, pastries, and breads. So immediately I went back on a gluten free diet.
After 1.5 months I noticed that my PMS (premenstrual syndrome) symptoms (swelling, bloating, fatigue, etc.) disappeared and for the first time in my life I didn’t need pain killers for severe menstrual cramps. Also in recent years I started to have spotting around day 21 of my cycle, perhaps due to a slightly low level of progesterone, and even that disappeared.
Phase 2. Dairy challenge and mold allergies
This was entirely unplanned. Once we had cut out gluten for a week or so, I started noticing abdominal pain after having dairy products. Around the same time I realized I had reactions to mold as well. It was odd to suddenly be able to sense these patterns.
Many of my favorite foods are dairy based so I was in denial for awhile. But finally decided to try cutting it out for a week. Then tried having a glass of milk a day.
I didn’t notice anything after the first glass of milk. The second day, I started having abdominal pain and itchy bumps after half a glass. The third day I had another half glass and within half an hour was the abdominal pain and itchy bumps again. The pain intensified over the next hour. I became extremely pale, was sweating profusely and nearly blacked out. After forceful vomiting and diarrhea I started to recover in the next 45 minutes or so.
Other symptoms that showed up after this reaction was: dizziness, low mood, feeling spaced out and sluggish, slight feeling of incontinence, gas, whiteheads, raspy voice, mouth sores, bleeding anus, metallic taste, and sinus pain.
One caveat was that we weren’t entirely dairy free. I didn’t remove butter from our diet, for instance, which might explain the delayed reaction, as the body was still somewhat adapted to having dairy all the time. Partly I wasn’t as strict or careful as I truly didn’t expect to have much worse reactions than say some gastrointestinal intolerance. The possibility of an actual food allergy was not on my radar. In hindsight this was extremely dangerous. Now, after being truly dairy free, reaction to a single accidental ingestion is swift and severe. Unless it is a minuscule amount, as in unintended cross contamination, pain starts within half an hour.
I was actually already intimately familiar with that full blown reaction pattern on the third day. I suffered through it many times in my life, sometimes fearing that I might not pull through and die when I black out. If I had a choice I never wanted to experience it again but there was nothing I could do as it always seemed random without a clear culprit. Within the next year I found a few other foods that cause a similar reaction and since avoiding them have finally been free of these episodes for the last few years.
My partner got smelly watery bowel movements with milk and when he had a second glass within a day would get abdominal pain. Our first guess was lactose intolerance, but turns out he has the exact same pattern with lactose free milk. So our current guess is that he probably has a milk protein intolerance. Along with gastrointestinal symptoms he gets headaches. Other suspected symptoms are bruxism (teeth grinding), dizziness, sneezing, and spacing out.
Again, mold was not something we were looking out for but we had a few incidents that increasingly made it clear what I was reacting to. The presence of moldy fruit or freshly cut grass would cause sneezing, runny nose, and headaches. When ingested (accidentally, from a mold contaminated smoothie maker) it also caused sharp ab pain in addition to the aforementioned symptoms. Later in the day it would lead to dizziness, food cravings, and napping.
Phase 3. Food chemical intolerance trials (salicylates, amines, free glutamate)
Unlike food allergies, food chemical intolerance is not due to any one food but correlates to the accumulated amount of naturally occurring food chemicals in the diet. As I still suspected there was something that was bothering my partner we decided to look into this. As the whole process is extremely involved I wanted to know if such a problem was likely in our case or not. I entered everything we ate in the last month or so into a spreadsheet and made an approximate chart of accumulated food chemicals and symptoms. And in my partner’s case the peaks and valleys of the curves seem to match up pretty well making it more likely all the effort might be worth it. I gathered the details of the food chemical intolerance elimination diet and attempts at food data tracking into separate posts.
Phase 4. Attempt at a less restricted diet
After weeks of prepping from scratch everything we put into our mouths we couldn’t wait to expand our diet. Not to mention social outings that were put on hold. Other than gluten and dairy and watching high salicylates for me and high amines for my partner everything else was rushed back in. Our groceries included processed foods again and eating out was back whenever we met people. The trouble was I started to have reactions nearly constantly ranging from mild to occasionally severe. At first, I thought I was being “glutened” by small amounts hidden in the food somewhere or even cross contamination. Luckily we were still recording our symptoms and everything we ate and looking back at the record helped us realize that there were other factors. And now that I knew how much better I could feel with the right diet, I was willing to forego some convenience to figure it all out for sure.
Phase 5. Series of eliminations and allergy testing
The more severe, sensitive, and immediate the reactions were, the more obvious they were to catch early on, once I recognized the possibility that I might be allergic or sensitive to things other than gluten.
The first of these were chestnut and pecan. I did not immediately suspect other nuts.
I became strongly suspicious of shrimp.
I started to get overwhelmed with the growing list of foods that I had to avoid. So I went to get formally tested. The results partly confirmed what I already knew. But then had a couple of potentially dangerous reactions due to overly trusting what turned out to be false negatives. Realized that my own data tracking of reactions were in some sense more reliable. After all the ultimate test for food reactions is if you actually react when something is eaten. This may or may not correlate to skin test results.
Once milk, gluten, tree nuts, and shrimp were removed for good, the worst reactions were behind me. Except a single incident that happened about a year later likely due to unpasteurized fermented soy. Also my tolerance level of salicylates improved to the point that I no longer had to think about it.
There was still something causing headaches and diarrhea. It was frustrating at times to constantly suspect yet another ingredient, sometimes even obscure additives in processed foods. Many things were eliminated at one point or another, usually something that was newly added or relatively infrequently eaten. But symptoms still continued. In hindsight, in such a case it is more likely it is something you eat fairly frequently yet never suspected for one reason or another. It took more than a year of tracking food on and off until we finally nabbed the sneaky problem foods.
The main one was soy. The reason it was not suspected was that a larger amount was needed to cause reactions and the immediate reaction, headache, was relatively subtle and sometimes got worse the next day or so. Diarrhea was more severe and problematic but it was usually delayed by a day causing us to suspect many other foods eaten right before the incidents.
The remaining incidents seem likely caused by less obvious mold in food: sauerkraut, kimchi, pickles, raw sprouts, grapes, berries. All of the above are tolerated when sufficiently fresh, except sauerkraut. With typically longer fermentation, perhaps impossible to come under my mold sensitivity threshold.
Phase 6. A new normal and gradual expansion of diet
The most certain indication that we finally reached a point where we caught all the foods that I am reacting to in our usual diet was much fewer surprise reactions. I am now gradually expanding the diet again and experiencing the happiness of enjoying foods that turned out to have been needlessly eliminated.
Sometimes others guide you down a path you yourself never would have considered. Awareness of this new trendy diet (back in 2013) started trickling in from various sources. There was a young nephew with autism. There was Lady GaGa. Then there was Novak Djokovic, who always seemed to have all the pieces necessary to become one of the greats, yet seemed slow to move past that final elusive threshold.
Then there was my partner. It was on one of our routine daily walks one bright early summer day that he jumped up onto the horizontal bars along the trail for some pull ups. When he jumped back down we were surprised to find redness and swelling expanding rapidly from his palms toward his elbows. Earlier in the year he had a bad case of hives all over his body that didn’t go away for a few weeks even with antihistamines and later prednisone. And because of this he had a standing referral to an allergist, which we finally decided to act upon.
We already knew he was allergic to cats, peach fuzz, and insect bites. Upon skin prick testing the whole panel of environmental allergens, we found him positive to nearly everything except an odd one or two. And his redness and swelling from dust mites was such that even the technician was surprised. Putting aside the question of how he survived upon this earth for so long, the allergist diagnosed dermatographism for the pull up bar incident and gave handouts on some guidelines for household products, eating, and cleanliness regarding dust mite allergy. He also explained food allergy tests were not necessary as it is impossible to not know one has it. When asked about the gluten free diet he casually suggested a two week trial then eating it again. Then we would probably be able to feel whether it had anything to do with anything.
By the time my partner came back with all this information I was concerned about his health. It was not just his allergies. He had gastrointestinal issues as well and claimed he never quite felt comfortable his whole life. Because of this I thought there was a reasonable chance this trendy diet might help even though it seemed a hassle to have to cook nearly everything at home after a crash course on what exactly is gluten free. It did not cross my mind that it would make any difference in myself. I only joined in the trial to show support. Besides, it was simpler to choose and cook one gluten free version rather than try to have both options on the table.
Despite a slew of physical complaints and being in and out of the hospital from time to time, my greatest ongoing struggle was with bipolar type 2, according to the current diagnostic system.
The first inkling that something might be slightly amiss was around age 8 when I saw visions and heard voices near daily. This went on for a couple of years but other than that I was a normal, energetic, sometimes extremely persistent kid.
I started to feel a bit numb and fixated on what adults expected of me around age 12, but clear trouble showed up when I was 13. For a couple of years I was miserable, anxious, and just barely holding myself back from suicide with the irrational belief that I would fail at killing myself and make life even worse.
From 15 to 21 I didn’t quite get actively suicidal again, but most of the time I was mild to moderately depressed with occasional dips into more serious territory.
Around 22 I had a lot of angry outbursts, which was new to me, then just before turning 23 I started getting rapid mood swings. By then I was very familiar with depression but mood and energy levels swinging between extremes sometimes within the same day was disorienting and truly alarming. I finally sought help.
I was prescribed Depakote, a mood stabilizer and anticonvulsant along with a preliminary diagnosis of emerging bipolar. The desperation wasn’t enough to get myself to actually take the medication. In part because my experience with illness and hospitals thus far told me I tend to get every side effect listed on a pill bottle, which most would think is a remote possibility. And the lists that psychiatric medications carry is usually not pretty.
Instead, with some help I found a therapist who was willing to work with me long term. But even she was tested to the limit about my decision to not take medication. It took months to pull out of the worst mood swings. And then years of therapy to get me functioning at near normal, that is, no longer meets diagnostic criteria. I was extremely lucky to have a great insurance plan at the time.
And now I am extremely lucky to have a spouse who supports me and lets me live a very low stress life. I could structure my day as I wished. I learned everything I could about what will help keep me relatively stable. I tried to sleep regularly, kept a very routine existence, I walked most mornings to get sun and exercise, even tried to keep social schedules fairly even and predictable. My spouse was great whenever I seemed to slip. He would drag me out of bed, push me to shower, take me out to walk, or to eat out, whatever it took to stop the onset of a familiar low mood.
It can’t be said enough how grateful I am for this good fortune that most people with similar mental struggles just aren’t afforded with. In this near ideal environment we managed to avoid any further major episodes, but there was still something wrong. I felt most of the time borderline mildly depressed, always at risk of slipping further. I would sometimes get bouts of energy and come up with a whole bunch of ideas but never get them done. Even with all the time I had, home was a mess and I still struggled to cook one meal a day. Every mundane decision was so difficult. I constantly struggled with feeling stuck, keeping focus, and general laziness due to lack of motivation and low energy. I assumed these might be the lingering habits of depression from much of my formative years and this ongoing private struggle was my lot in life.
So I was shocked that these lifted when I avoided gluten. About a week in I felt more clarity and energy than I had in a long time. It was like a little glimpse into what life was supposed to feel like, what I was missing all this time. Then after another week, we did a gluten challenge. A couple of hours after pizza I felt irritable. But for a full day we kept eating pasta and bread. I kept getting irritated at the slightest things. Just the day before I had so much fun brainstorming all the things I could do, and now my pencil was stuck on the first line, whether I should get some groceries today or not, for a full hour.
This was a huge discovery. By banning gluten, or maybe it’s wheat, I got my brain back.
And then I started to learn a whole host of new things about my body. It seems not just my brain but my whole nervous system was dulled by some reaction to wheat. I had more than my fair share of familiarity with the hospital system throughout my life, most of them, mysterious cause unknown inflammation of organs, some severe enough to require surgery, hospitalizations, or long term treatment. And now for the first time I could discern patterns between my various physical symptoms and food, and mold, etc. In short, I had a whole host of various allergies, both the immediate and delayed types, some mostly localized to the gastrointestinal tract like FPIES (food protein-induced enterocolitis syndrome).
I also found that high free glutamate foods seem to trigger hypomania. Similar to how the combination of food and exercise can cause allergic reactions (FDEIA: food dependent exercise induced anaphylaxis, for example) the combination of an allergen and high free glutamate seems to bring on migraine in my case. But when I’m successfully avoiding all foods I am allergic to, natural free glutamate, and even MSG (monosodium glutamate), by itself does not seem to cause any symptoms but excites the body. Even one meal of high glutamate can give me such a buzz that I cannot sleep for almost three days straight.
Some of you may know that bipolar people have a reduced expected life span of more than ten years even when we remove those who commit suicide. What we think of as mental illness, is very likely a physical illness with the most worrisome symptom being that of the brain malfunctioning.
I never imagined I had any food issues until I trialled a gluten free diet to support my partner. I suffered from major depressive episodes since I was thirteen and in my early twenties was diagnosed with emerging Bipolar. Fortunately with plenty of help I was able to keep further episodes at bay but was prone to being mildly depressed. And now for the first time in my adult life I experienced clarity and energy and many physical symptoms that I always lived with disappeared.
And the surprises kept coming. My body started to feel more clearly when something was causing a problem. Within a few weeks I recognized I was allergic to mold and milk, later confirmed through testing. In the following three years I continued to learn more about my own body and about less typical manifestations of allergies in general. I am still astonished by how even severe reactions can somehow be masked enough that it is nearly impossible to pinpoint the cause despite ongoing suffering.
I feel there are still many unknowns and a large gap between research and what is known in the mainstream. The immune system going awry just might be the culprit behind a large subset of unexplained and usually chronic conditions, both mental and physical. Here, I will try to document what I am learning and my speculations.
I had a lot of chronic health issues, both large and small, that bothered me throughout my life and every once in a while landed me in the hospital. Most of these issues were deemed cause unknown, and frequently was some kind of inflammation of various organs.
But subjectively my greatest ongoing struggle since my teenage years was my mood and energy level.
I only really stumbled upon this because I was trying to support my partner, otherwise I am one that is very unlikely to have thought this “fad” and other food issues would have anything to do with me. I never suspected I had any problem with any food.
Thus I didn’t expect I would feel any different when my partner and I trialled the gluten free diet for two weeks. We really thought my partner might find some relief as he has various environmental allergies and digestive issues. The changes I started to feel was a huge surprise. After about a week my energy level, thinking, productivity all improved. And when after two weeks we ate gluten for a day, within hours I was irritable, then low mood and energy returned, and by the next day my brain felt literally stuck. I couldn’t even make simple decisions and it was a huge struggle to get any work done. Dizziness, headaches, hunger pangs, and many other minor symptoms returned as well.
Many might have tired of gluten free being trendy, but I for one thank this “fad” for totally changing the state of my health and understanding of my own body. It was not the full answer, but the first large piece of the puzzle without which the rest may never have fallen into place.
As it turns out, gluten was only the tip of the iceberg. Within a couple of weeks my body started to recognize allergies to milk and mold. And when I removed these offenders I recognized reactions to some tree nuts and shrimp. Since I heard that most adults who self diagnose with food allergies aren’t actually allergic, I got tested. Besides I was in disbelief that I could have lived my whole life without knowing, which some allergists say isn’t possible. But to my shock, my skin prick tests actually confirmed positive for milk, some tree nuts and grains, dust mites, and aspergillus mold.
Perhaps gluten has a dulling effect or because I had multiple allergies and all were eaten fairly frequently my whole life, my body was doing its best to adapt and each individual reaction was covered up.
After the gluten free diet we also tried the failsafe diet, as again we suspected my partner may have some food chemical intolerance. At one point we removed all processed foods or eating out and made everything from scratch at home, all the while tracking everything we ate and our symptoms. Sometimes it took a lot of trial and error to figure out what was really going on. For example in the beginning I frequently wondered if I was being “glutened”. Sometimes we were led down strange paths, ironically because we trusted what is supposedly true for most people. Ultimately it took nearly three years but we now have fairly clear answers for ourselves mostly thanks to the data we recorded of our diet.
This journey made me aware of many lesser known aspects of food allergies and sensitivities along with the discrepancy between mainstream knowledge and what can be found in research literature. It was interesting to observe how fervent people can be about their and sometimes even other’s food choices. I noticed possible connections between food and chronic illness. Also this strengthened my hunch that mental illness will eventually be explained as physical illness.