I still cannot eat dairy and gluten and my immune system still feels like this lingering problem to be wary of.

I’ve overcome the years of debilitating immune problems and I’m mostly healthy now, without the need for immune-suppressing drugs. I can exercise, substitutions for dairy and gluten are plentiful these days, and overall things are going well and I have more pressing things to care about like my startup and relationships.

And yet there’s still a cloud hanging over me.

Whenever I do eat dairy or gluten the inflammation causes brain fog and significantly kills my appetite. I do a good job of avoiding these two allergens but sometimes at the cost of eating significantly less than I would like. The net effect is that it’s very easy to lose weight but losing weight means lower energy.

Because of my restrictions I’m basically always living in a caloric deficit which means I have very little buffer room of extra energy. I’m prone to irritability and I often tire out faster than I otherwise should. If I lose enough weight and enough energy it significantly affects my appearance too. My hair thins, my clothes don’t fit, my skin looks worse, etc.

If I’m not careful loss of energy can be a negative spiral where lack of energy prevents me from working out like I should which lowers my appetite even more which makes me less likely to expend energy to get enough calories etc etc.

This may seem overblown but it pervades all aspects of my life. Consider something as simple as a small weekend trip. The moment I leave the city food becomes more scarce and options more limited. It’s not possible for me to just stop at any cafe or bakery or diner to eat because I probably can’t eat 90% of their menu. Any small trip from home means constant awareness of my internal energy meter and tiresome calculations for how and when I can use my energy over those few days. I often resort to meal prep and bringing food with me but there’s a limit to how much food I can reasonably bring. It’s not always practical to preserve that food over multiple days and it hurts spontaneity.

This isn’t just for trips. A busy weekend day running around the city with friends is accompanied by the anxiety of where my calories will come from. It’s almost guaranteed that on those days I’ll end in a caloric deficit. When you don’t have a large buffer of weight or energy those days can feel like a large cost.

As a founder, I spend so much time working and optimizing for my performance during the week I don’t want to pay this cost but I also want to have a life. I don’t want to have to think about this. I want the freedom to work hard and live my life and be spontaneous without feeling like I’m constantly drawing from a finite pool of energy that is delicate and needs to be constantly managed.

Ultimately I don’t mind if I can’t eat dairy or gluten but I do mind the consequences on my energy levels and overall health.

How it happened#

I grew up eating both dairy and gluten. I didn’t really have any allergies or health issues growing up and I loved cheese and bread.

I lost the ability to eat or drink dairy at some point in high school. I was trying to put on serious muscle for the first time in my life and I first noticed that whey protein would really upset my stomach and then soon regular milk and cheese. Lactose intolerance is relatively common and although it was frustrating, I just accepted that it was probably genetic and switched from dairy products to alternatives.

Gluten intolerance was more recent, and more interesting. It happened in summer 2019 and was marked by a sudden super sharp pain in my stomach while driving to work one morning. After that it was a slow decline in health that eventually led to debilitating autoimmune disease lasting for two years and only abating when I aggressively cut out all FODMAPs from my diet. It took another year just to get back to stable health, and even now I’d say I’m only at about 95% of my previous health given occasional flareups and my remaining inability to eat gluten.

Symptoms and progression#

The broad symptom I experience when I eat dairy or gluten is inflammation. My tendons hurt, as if they’ve been strained or overworked even if I haven’t worked them out recently. Tendons in my toes, fingers, knees and shoulders are often the most affected. My scalp often gets sensitive, and my skin in general gets sensitive and sometimes itchy. My stomach hurts and feels like it’s burning, and I sometimes get a rash on my skin around my forehead. I get brain fog and I experience noticeable a drop in my sleep score and overnight HRV. I often experience bloating and loss of appetite.

I assume if I let these toxins build up long enough I’d experience even more severe symptoms like I did when I was sick for two years.

Over time I’ve grown more resistant to gluten and can often cheat here and there these days. The source of gluten also makes a big difference in how it activates me.

Dairy still fucks me up extremely badly. Eating a dish cooked in butter can activate my immune system for a week or two whereas with gluten, I usually recover after a day or two.

Hypotheses#

The first interesting thing about losing the ability to eat gluten is how sudden it was. Getting seriously sick took some time because it takes time for the effects of an autoimmune condition to build up but gluten or FODMAPs as a trigger seemed to happen overnight.

The second interesting thing is how when I was at my worst, it felt like more than just gluten. It’s always hard to know for sure when looking back but I’m fairly confident that all FODMAPs were causing my immune system to react. In time as I seriously focused on my diet and rebuilt my gut health, I regained the ability to eat most FODMAPs with the exception of gluten. So there’s an open question: was gluten the issue or is gluten just a uniquely potent FODMAP that I can build a resistance to in the same way I have with others?

The last interesting thing is how becoming allergic to gluten recontextualized my dairy intolerance. I initially thought my problem with dairy was simple lactose intolerance but…

• Lactaid seems to have no effect for me
• My symptoms from dairy are basically the same as my symptoms from gluten: immune activation
• As far as I can tell the rest of my family is not lactose intolerant

Which leads me to believe that I’m not actually lactose intolerant so much as I am allergic to dairy in the same way I’m allergic to gluten.

Anecdotally, A2 milk also affects me significantly less than normal milk which leads me to believe that I may be allergic to the A1 protein in milk. And yet A2 milk is still not digested well so it’s possible that it’s not A1 or it’s possible that it is A1 but years of not drinking milk at all have made me independently lactose intolerant.

Ultimately, given my symptoms I’ve narrowed down the large problem areas to the following categories:

• It’s all in my head. This can’t be ruled out but I find it unlikely given the fact that I’ve eaten dairy and gluten accidentally without knowing until my immune system immediately flared up. There seems to be something physically happening but my mind is probably involved to some degree with stress.

• Dysbiosis. In other words, something about the composition of my gut’s microbiome is messed up and causes reactions to certain types of food. This could be an overgrowth in specific bacteria, fungus, or even some sort of viral infection. Infections are an underrated and under-diagnosed cause of many autoimmune conditions. Given my extremely acute sharp stomach pain at the onset of my gluten intolerance, part of me wonders if that was an acute point of infection which triggered my immune system going forward. Beyond gluten and dairy my inflammation seems to react to carbs and sugars which is often present during certain fungal infections. It seems quite plausible to me that some micro-organism is triggering my immune system or causes certain byproducts from digesting dairy and gluten that is triggering my immune system.

• Immune dysregulation. It’s possible that an infection caused initial activation of my immune system or sensitivity to gluten but now that underlying trigger is gone and my immune system still triggers on gluten even if there’s no bad byproduct. In other words, the immune system is incredibly complex and in balance with the rest of the body and combined with its ability to learn behaviors it’s very possible there’s no underlying problem to address with antibiotics or the like and my immune system itself learned something it shouldn’t have learned. This could also be caused by excessive stress/cortisol dysregulation, or some problem somewhere else in my energy production system (i.e. vitamin D resistance).

• Allergy Response. This could just be a legitimate allergic response from my immune system without an underlying infection. This could be caused by what’s often called leaky gut, where microparticles cross the intestinal barrier and enter the bloodstream when they shouldn’t, triggering the immune system. This is literally a physical problem that can be caused from a variety of factors.

Goals and Plans#

My first and foremost goal is to maximize my available energy throughout the day. I feel confident that many problems including depression, various physical illnesses, and even how you’re perceived by others is directly related to the energy available to your body. Energy is upstream of everything.

The way to maximize my energy is to eliminate that which depletes it and add that which gives me more of it.

The biggest lever I could pull to change my energy levels is figuring out how to eat dairy and gluten again without activating my immune system. This would have the strongest effect because it would help at both ends. Immune activation dramatically consumes energy and prevents all sorts of biological functions necessary for producing more energy so if I can fix my immune system I can meaningfully change the energy available.

Even without being able to totally fix my immune system if I can gain weight then I’ll quite literally have more buffer room when it comes to energy stores. Before I became sick back in college I was ~160-165lbs probably with 12-15% body fat. I felt very good and had a lot of energy. After getting sick I quickly lost 30lbs and it took me 3 years to get back to 150lbs where I’ve been for a while. If I can get back to 165 or perhaps even 170lbs bodyweight I suspect a noticeable difference in energy levels.

The easiest way to gain weight would be if I could eat dairy and gluten because the nutritional profile of those foods are incredible for bulking but that’s not my only option. I find that protein has always been very filling for me which is not what you want for bulking. At the same time carbs and sugar tend to increase my inflammation levels noticeably which adds even more difficulty to bulking.

So, while not strictly necessary, a lot of my focus on my health and energy is on how I can regain the ability to eat dairy and gluten. Without that I look for ways to prevent immune activation so that I’m not burning energy unnecessarily and I’m maximizing the speed at which my body can refill its stores.

I must also stay active. Contrary to popular belief, exercise increases energy levels and I become noticeably more tired and sluggish the less active I am. I’ve also noticed my inflammation and immune regulation is far better when I’m regularly active.

At the same time I need to work on my mind. I find myself clenching or tensing quite a bit and I think it’s worth spending a lot more time trying to train and strengthen my parasympathetic nervous system.

Apart from my work this is the biggest focus of my life right now and I’m optimistic that I’ll make more significant progress like I have in the past.

I’ll write more posts as I experiment.