Insidious Sustenance

Note: This was originally written on May 5, 2012.

     In high school I sat in the back row in every class, doodling in my notebook. I almost always finished all of my homework in 'study hall' (an optional class in which everyone sits in the cafeteria, required to be silent, and can work on whatever they want to). Then I would run home as fast as possible (to beat my sister to the remote control- whoever possessed the remote control got to decide what programs to watch on the tv). I made a giant unhealthy snack with the tv remote stuffed in a pocket, and then watched cartoons until dinner. Guess what? I still made the honor roll.

     I had a great time in college, and finished my last BS easily (as I expected to). I even had no trouble succeeding in graduate classes as an undergraduate. I did research, I remembered everything. I could quickly skim my notes before an exam and easily ace the exam. I had one class where the professor made exams that required us to actually think and solve problems we had never seen before, and I loved that (the other kids, not so much, some of them were even giving death threats to that professor).

     I started my MS like that, too. Something began to change, though...and it was me. The first thing I noticed was that I started getting sick more frequently than I normally did, then I started to get episodes of brain fog. At first I assumed maybe the classes were just getting harder, but I had just aced a difficult grad class, which even PhD students had dropped, saying "it's too hard, there's no way I'll get a good grade". I analyzed my situation, and no, it was not my classes, my TA position, my RA position, or my research. It was me.

     I decided to push through, but it got harder for me. By the time I finished my MS my concentration and memory issues had begun to increase, so I held off on my plans to go for my PhD, and decided to stay home while I regained my health (I was erroneously assuming I had some kind of burn-out issue, even though I loved getting degrees).

     Over the next few years my health got worse and worse. I was mired in brain fog more and more. The people around me who knew me as a smart person were getting irritated with me, thinking I wasn't paying attention to what they said, thinking I was pretending not to remember, thinking I was being lazy.

     I was getting sick more and more. I would get a sore throat, fever, and congestion. No one exposed to me would catch it. After two weeks of it I would get healthy, but my happiness started getting subdued, because I had less and less healthy time between sickness over time. Pretty soon I had one week of health between two or three weeks of sickness.

     I tried cutting out sugar (it reduces immune system function for some time after consuming it). I started adding fruit to my diet, and then I started adding vegetables. No change. I was still slowly deteriorating. I came across the idea of a green smoothie on an Internet forum. It seemed like a great idea to sneak in even more vegetables, so I decided to have one large green smoothie a day, in place of either breakfast or lunch. I still didn't get any healthier, but I noticed something odd that would later become significant: I didn't get mild nausea after consuming a green smoothie. I didn't mention that issue yet; I had nausea after every meal for years. With no other trouble I maintained that it must be related to my odd gut issues (doctors generally said they didn't know what was wrong, or that I possibly had IBS).

     Back to my other issues. In addition to the cognitive problems and illness issues, my hair was falling out (which was/is very upsetting to me). I got sick for two and a half months (by this time you had better believe I had been to the doctor and had bloodwork done, but the doctor found nothing wrong and said "maybe you're just unlucky").

     No one else caught this from me, so obviously my immune system was trashed. I was, at this point, so glad that I had documented everything (I made pages of graphs and charts and notes) from the start of the year (2011). I finally got better on vacation (in the Swiss Alps, actually). How interesting that I got better while sleeping in a frost covered tent, while hiking all day, and not eating much.

     After I got back I went through all of my documentation to try to figure this problem out (really difficult when I feel like my thoughts are mired in fog, and they move and wisp away as I try to grasp them- how I wished for the images in my mind to be crisp and clear like they once were). Anyway, I started to suspect diet. Remember that green smoothie? Why didn't it make me nauseous? I looked into my diet, and decided that it could be wheat. I ate wheat every day, in every meal- except the green smoothie.

     As difficult as it was, I cut wheat out of my diet. I stopped getting sick. I was healthy for one entire month and I was elated! I found the problem! But had I? I still had brain fog, though not as bad, I still didn't feel as strongly healthy as I had in the far distant past, and some wheat free meals still made me nauseous. I didn't understand what the problem could be until one of my friends mentioned her son's problems with gluten. Gluten... could that be it? I tried to cut gluten out of my diet (not an easy task, by the way, when it used to be in every meal). I kept getting accidental exposures to it, but the good thing was that I found the problem!

     After almost two months of an attempted gluten-free diet, I felt the need to confirm my problem with the doctor. So I went to the doctor and brought along the papers with everything I had documented from all of 2011, and papers I had documented from my diet trials in 2012, and a list of the problems I had over my entire life. That seemed like overkill, but I really wanted answers.

     My doctor said he thinks I might have celiac disease, and he wanted me back on gluten for 6 weeks. After 6 weeks on gluten I could get my blood drawn for testing. Those were a terrible six weeks! My symptoms came whirling back, seemingly even worse than before. I did it anyway, got blood drawn, and went back to the doctor. We discussed my symptoms, and he said it really sounds like celiac disease, but my blood test said no. He wanted me to get small intestine biopsies done, but I felt so weak at that point, I said no to the biopsies. The doctor told me I should stick to the gluten-free diet anyway, because of my symptoms.

     After that I read somewhere that the celiac blood test gives false negatives 7 out of 10 times, and only tests for reactions to two of the gliadins (IgA and IgG), although there other gliadens in gluten that could be the problem for an individual. So maybe I really do have celiac disease, maybe I don't, but I definitely need a gluten free diet!

     Now, off of that tangent and back to my cognitive function. It is improving, but I am still not back to my old self. I know there is a possibility that I may never fully recover in this area, but I desperately hope to. I can remember how I once was, and it is very sad to lose that.

Links for more information on gluten intolerance:

http://glutenintoleranceschool.com/
http://www.glutenfreesociety.org/
The Gluten Free Society has some informative videos that are free to watch.  It is not free to join their forum, though.