Our Journey with Infertility

Back several years ago we were diagnosed with “unexplained infertility” and found ourselves in a fertility clinic. While we didn’t desperately want a child, we wanted to know what was wrong and if something could be done about it. We were given a very long questionnaire to fill out. We studiously filled out all the details in hopes that they might spot some kind of pattern.


At least for us, nothing further was mentioned about anything in the questionnaire, our testing so far, or any of our health history. We were just ushered towards standard protocol.

A few rounds of IUI (intrauterine insemination) with clomid, then onto IVF (in-vitro fertilization). There was some recommendation towards ICSI (intracytoplasmic sperm injection, manually injecting sperm into egg), due to sperm morphology issues, but that was the extent of any customization for our specific case, if you will. In the end it didn’t matter since we declined IVF.

Later when I found out about the connection between gluten sensitivity and unexplained infertility, I couldn’t help but wonder why didn’t anyone look at that angle at all.

It’s known that celiacs can have infertility. What if we just don’t know that yet for other foods? When I found I had a serious problem with wheat, I wondered if that would resolve our unexplained infertility.

It didn’t. 

But, after finding more problem foods (the last was sneaky soy) three years into our food experiment, and feeling the healthiest in my life, we got a huge surprise!

We now have a child we thought we’d never have. All in all we spent nearly ten years as a couple without using a foolproof method for contraception and never got pregnant.

There is no way we can definitively prove that this had something to do with eliminating everything we were allergic or sensitive to, but subjectively we can’t help but think that at least for us it was the key.

People are Over-diagnosing Themselves?!

Every now and then a catchy title circulates “most adults who claim food allergies are not allergic!” or “millions of Americans not food allergic as they claim”.

This makes it sound like many are faking their illnesses.

First of all, if you actually read these studies, the percentage of people who actually do have food allergies are quite high. So you could have made the title “majority of adults who claim food allergies are actually allergic” or “millions of Americans food allergic” or “food allergy in adults are on the rise”, which would have all been closer to the truth. But maybe not quite as clickable or joke-worthy.

Dismissing them as faking it, being hypochondriacs, stupid or mental helps no one.

Then what are the possibilities? What might actually be happening?

1. False negative. They actually do have an allergy but it did not show up in testing.

2. Non-IGE mediated allergy. Some of these can be severe, like FPIES.

3. Autoimmune disorder, like celiac disease.

4. Gastrointestinal allergy. Can be both IGE or non-IGE mediated and most don’t show up on skin tests.

5. Food intolerance. Not an allergy, not immediately life threatening, but can still cause a lot of havoc.

6. Wrong culprit. They have a food issue, but to a different food.

7. Outgrew the allergy. They had the allergy but outgrew it by the time testing was done. Actually a happy ending!

Salicylate Sensitivity and Allergy

At first, my tolerance level was roughly one piece of fruit a day. Obviously a shorthand as there are many foods with salicylates and the total amount is what actually matters but for the most part fruit tended to be the single highest salicylates source in our diet. But sometime in the middle of going through our elimination diet I realized I tolerated a lot more salicylates than before. It seemed to coincide to the point I entirely eliminated dairy, including clarified butter and ghee, but I cannot say with absolute certainty whether that was the key. Nowadays, I don’t worry about the amount of salicylates in our diet.

I wonder if there is a connection between salicylate sensitivity and food allergies but have not been able to find studies on this yet. Although there is a connection the other way around in that as with exercise, aspirin and NSAIDs can amplify food allergy reactions.

3 Year Timeline of Diet Experiments

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.

More on Bipolar 2 and Self Care

Calling Bipolar 2 the softer version of Bipolar 1 is not quite accurate. It might be easier to hide and avoid hospitalization. And aside from actual suicide attempts, you are less likely to land in the emergency room. But Bipolar 2 actually has a higher suicide risk than both Bipolar 1 and Major Depression. Of the three, over a lifetime you spend the longest time depressed. Sprinkled throughout are higher energy times when you might actually have the willpower to kill yourself.

You don’t exactly swing between happy and sad states.  To describe from my own experience, which seems fairly close to textbook Bipolar 2, it is more accurate to say you swing between low and high energy states, with the vast majority spent in low. Note that low doesn’t necessarily mean sad, nor does high mean happy. Low states might be lethargy and way too much sleep, it might even feel comfortable in a weird way.  High energy states can bring happy and productive hypomania, but this is woefully infrequent. More likely they arrive with high strung anxiety, irritability, and explosive anger. 

At first glance the more serious depressive episodes might look indistinguishable from major depression but apparently the latter is more likely to suffer from sleep disturbance and insomnia. Also bipolar depression tends to have a much earlier onset in life. In my case the first major episode was at age 13.

Unfortunately most available information on Bipolar paint a simplified picture. Describing it as a fairly well defined chemical imbalance of the brain that must be controlled lifelong with mood stabilizers. For some these might be life saving, but they are probably a subset of the diagnosed. We don’t try all the other less invasive and about as effective methods available. Sometimes societal pressure and stress don’t give us a choice. It also doesn’t help that there’s no money to be made in these lifestyle tweaks.

The following are my own self care strategies (aside from therapy and/or medication) that seem to help.

Regular routine (sleep, meals, work, social activities…)
Someone to talk to
Low stress (not living up to my “potential”)
Writing, music
No alcohol
Dark therapy

Interestingly this is pretty close to what people with bipolar self report worked according to a 23andme survey. (https://blog.23andme.com/23andme-research/what-patients-say-works-for-bipolar-disorder/)

Bipolar is not only a problem with mood regulation. There are also executive functioning deficits. Once you are out of the thickets there is still much work to do.  Personally, I still need to put in a lot of effort in decision making, focus, goal setting, and social contact.

All these do not require any money or prescription and they carry no risks. But they do require changing your habits and you just may not have the energy to do so. I was only able to get to the point of self care deterring further episodes after years of therapy and constant support from my spouse. But as mentioned before, I still struggled with mild mood problems, low energy, brain fog, and occasional explosions, among others. The final key, the point of this whole blog, was diet.

There is increasing evidence that mental disorders are connected to inflammation, particularly of the gut. The source of this inflammation may differ from person to person, but in my case undiagnosed allergies and sensitivities seem to have played a key role. That the brain and gut and immune system all influence each other may have at one point been dismissed as wild speculation but in recent years there was a game changing discovery of a direct physical connection between the brain and immune system. (http://www.nature.com/articles/nature14432.epdf) Toppling the notion thus far that the brain was immune privileged.

Now I am at a point that I didn’t know I’d ever get to. I am on an even keel, almost saintly sometimes. I seem to have many times more energy and clarity. At most I might have mildly low mood for a day or two after tiny accidental ingestion of some problem foods.

Mental Health History

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.

The Short

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.

The Long

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.