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.