(I just want to start by saying that I have posted this information on a couple other TRT forums, so you may have seen it before if you are active on other sites. I also want to reiterate what I wrote at the beginning: this is an extremely long post. I understand if you completely skip it because it’s too much information. I do think, though, that there is a lot that can be learned from it. And I would appreciate anyone reading and commenting.)
I’ve been planning on writing this all out for a while now, so here it goes. Get cozy; it’s a long one.
I began having strange symptoms at age 17. I started sleeping a bit more than I usually would. My mom recognized it was odd, though I thought nothing of it, and took me to the doctor who said it was probably just stress related. I thought he was wrong since actually at age 17 I was less stressed than I’ve ever been in my life, but whatever, it’s probably nothing to worry about. At age 18, I went off to college and remember telling my dad on the phone one morning that I felt “off”. Specifically I felt like I was in an altered consciousness, like I was on drugs. My cognition was changing/declining. I began to get worried about this during my first semester of college. I was sleeping even more; I couldn’t think as clearly as I used to; and my anxiety levels had sky-rocketed (not that I was particularly anxious about anything, but my heart rate would get very high very easily).
Second semester of college, I stopped drinking and smoking pot (I had occasionally smoked in high school and beginning of college) and completely stopped socializing on weekends. I was nervous that by binge drinking, smoking pot, and dabbling in hallucinogens in high school that I had permanently damaged my brain and that this was the cause of my symptoms. The next summer I worked a manual labor job, which was very difficult in my condition, but I persevered, thinking that I could make myself better through exercise. I remember many days stopping for a moment to think, What the hell happened to me? Am I slowly losing my mind? I was a completely different person than I was when I was healthy, and it was a horribly frightening experience. The exercise and endorphins perhaps made me a bit happier, but the symptoms were still there, and I was too weak to do anything but work my job, eat, and sleep. When I saw friends on the weekend, I would actually fall asleep while hanging out with them.
Third and fourth semester of college, things only got worse. I started popping caffeine pills in class just to stay awake. My heart rate was often so high that I would be having miniature panic attacks throughout the day (and they were quite painful). Any time I got the chance, I would sleep. Depression also kicked in during this year, leaving me often contemplating suicide. I still thought perhaps I had caused this condition myself through my choices in high school. Nonetheless, I saw my doctor again in between my third and fourth semester who told me that I was depressed, it was stress, etc. He told me to think about trying an SSRI. Fourth semester I started going to my on-campus therapists. Knowing myself and considering how my illness progressed, I knew that my symptoms were not the cause of any one event in my life, so I doubted therapy would have any effect, but I needed some sort of a prescription drug to cope. I convinced one therapist to put me on an anti-anxiety medication. It did barely anything but give me headaches so I stopped. These two semesters and the following summer were easily the worst periods of my life. I really don’t think I could ever go through something like that again and survive.
Despite my illness, I still was trying to make the best of life. The summer after my fourth semester I went to Paris to live and work. I continued to get sick. A relationship that I had fell apart (I believe due in part to my inability to be who I know I am). As a result of a extremely bad cognitive spell, I crashed a scooter in the middle of Paris traffic not once but twice; one of those crashes was a very close call, and I am lucky to be alive. While in Paris, I found a doctor that spoke broken English, whom I convinced to test my testosterone and prescribe me the SSRI Lexapro.
The Lexapro did something, but I realized through taking it that it was not the answer. It made me feel a bit happier, but I still slept a lot, my cognition was still greatly impacted, etc. I stopped taking it soon after beginning. The testosterone came back fairly low. I can’t remember the exact number, but I think it was in the high 300s. The testosterone level seemed like it could be an issue, so I changed my diet to a high-fat, no refined carbs diet. All the same, I decided to research other issues that I could have. I spent weeks using every moment I wasn’t working or sleeping to research my problem. I came up with a list of about 12 things that could cause fatigue and brain fog (i.e. the cognitive decline). When I returned home, I called the same doctor (which I now realize was a horrible doctor) and asked him to test for these 12 things. The results came back: you have celiac disease.
I was very upset that it had taken so long to figure this out. For those of you that don’t know, celiac disease is an auto-immune reaction to the protein gluten (found in wheat, barley, rye, and spelt). The body reacts to gluten as it it were an invader like a virus. Unfortunately, the immune system also attacks the villi (finger-like projections that help to absorb micronutrients) of the intestines. What this means is (1) your body takes a toll because it is in attack-mode every time you eat and (2) over time you get increasingly sicker as your intestines become increasingly destroyed, and as a result you can no longer properly digest food.
At the same time, I was excited. Here is an answer. This is why you were sick. Given time, you’ll get better.
That doctor had tested my testosterone level as well at this time. Testosterone came back at 388 ng/dL. LH and FSH were normal and mid-range. Great, I thought. This will get better too! Of course my testosterone was low: my body couldn’t digest food correctly!
(to be continued in next post)