It was about six months after being diagnosed with celiac disease when I had my first major reaction. I was fixing gluten-free toast in my gluten-free toaster. I remembered getting a plate out, so when I saw crumbs on the plate I assured myself that I must have set the bread on the plate before putting it in the toaster.
The symptoms hit several hours later as I was driving home from a soccer game. Even though it was morning I was suddenly very sleepy. Then my belly began to rumble. I dashed into the house and made a beeline for the bathroom. After that I slept and woke up feeling pretty normal, except for one thing. I was very irritable. Very, very, irritable. For the next week I yelled at my kids and was angry about everything. I hated it. One thought kept going through my mind, “I feel like I’ve turned into a witch!”
That series of symptoms, becoming very sleepy, the bathroom thing, and then longer lasting mental issues, became the pattern for many of my reactions to accidental ingestion of gluten. My mental reactions weren’t always the same, though.
I don’t remember how I got glutened this time, but I clearly remember how I reacted mentally. I was totally apathetic. I didn’t care about anything or anyone. I didn’t like or dislike. I didn’t love or hate. I could live or die. I wasn’t depressed; I just didn’t care.
I remember explaining my mental state to my husband one evening. It was the one symptom that worried us both. However, I awoke the next morning and informed him that my status had changed. I now cared about life very much, and I was mad about everything. Beware!
We had plans to do some furniture shopping that day, and we went ahead with it. My husband wasn’t about to leave me alone so we might as well go out and do something. The problem was salespeople. I had no tolerance for them. My husband did all the talking, but after our third stop, I was losing it. The salesman would not take a hint and leave us alone. He kept pestering. He kept talking. I finally told him to shut up. Well, not really to his face. I was standing back a bit, but he might have overheard me. He did leave us alone.
So why does gluten affect me and others this way?
I think I almost cried as I sat listening to someone who truly understood. He didn’t understand because of personal experience. He understood because of medical knowledge. He explained how and why I have mental reactions to gluten.
Dr. Allesio Fasano, director of the Center for Celiac Research, spoke at a support group meeting. The room was packed, and we were all soaking in the information he was feeding us. In particular, his explanation of why celiacs have mental reactions to gluten stuck in my mind.
Intestinal permeability is part of the reaction that takes place when someone with celiac disease eats gluten. To put it simply, molecules that should be kept within the intestines are able to “leak” out into the bloodstream. Gluten is one of those molecules.
When gluten is carried by the blood to the brain, it causes problems. Dr. Fasano explained that the gluten molecule is similar to endorphins which, along with other things, give us a sense of well-being. The gluten molecules will dock where endorphins are supposed to dock. In effect, gluten blocks endorphins and the positive feelings they can give us.
Thankfully, I haven’t had a bad mental reaction in a long time, but it could happen again. I hope it doesn’t happen to you, but if it does, I hope it helps to have an explanation and to know you are not alone.