I am really surprised it has only been three months actually. I looked at the date of my last post about this to figure it out and I was shocked. It feels like a lot longer.
This might be because a few weeks after I wrote the post about having celiac disease, which you can read here, my remaining cat died. That’s two best furry friends lost in two years. Now I am a cat free cat lady. If I think about it, this is the first time in my life I have ever been a cat free cat lady. My family growing up had multiple cats at any given time, and I had Bill and Weener (rest in peace) since I was 21-ish. I have decided to have a cat free period for a year or two, just so I can experience the freedom of not having the responsibility of pets for a moment. I am also in a precarious apartment situation, and I know that if I did have to find another place to live, it would be so much easier now. I would like to be in a better spot before getting more cats. I will get more cats though, eventually.
I’ll get back to this in a minute, but first let me tell you a bit about how I have experienced being gluten free so far. I’ve been attempting to evade gluten for the full three months. If I have ingested any, it has not been to my knowledge. That said, I’m sure I have. One thing I have learned is how ridiulously difficult it is to actually avoid all gluten, unless you literally cook every single bite you eat yourself (and obsessively read every single ingredient you use, including spices, and research the companies when their labelling isn’t clear, and… look, it’s endless.) I know people think that gluten free diets are this fad so everything should be easy for celiacs, but that’s not the case. A lot of “gluten free” foods are not suitable for people with celiac disease due to cross-contamination. I am pretty sure that sounds like crazy talk to a lot of people who don’t know that much about celiac disease, or at least that’s the impression I get from talking to people about it. Oh, by the way, I try not to talk to people about it. But it is surprisingly hard to avoid.
For example, I really wanted to not tell my coworkers about it because I really don’t want to spend time talking about it with them. But I found out that when the holiday items came around, they simply would not stop bothering me, no matter how many times I said “No thank you.” so I told them. Now they leave me alone and give me pitying looks when I pass by the cookie table. Hey, it’s cool. I have accepted my lot in life here- and it doesn’t include office baked goods. Not a huge deal.
Also, what you eat comes up a lot in regular conversation. Especially when it’s so drastic. I don’t think most people have considered really basically not being able to eat out or eat what friends cook unless there are special steps taken. It sucks and is annoying. Thus it is a part of my life and I want to talk about it when friends are talking about our lives.
I have definitely been “glutened” at least twice though. Both times from restaurants, both times from things that should have been gluten free, but I guess must have been cross contaminated. I can tell when this has happened a couple of hours later when I feel like the insides of my intestines are burning. No, really. I have never had this feeling before going on the GF diet and then accidentally eating gluten. I used to feel I had a very strong stomach (probably because my intestines had killed themselves attacking gluten) and now I feel like I have to be very careful what I eat, not just in terms of gluten. I have read this is common, for people to feel more sensitive after starting the GF diet, while our intestines begin to heal and function properly. The other way I can tell is when I use the bathroom the next day(sorry TMI).
But the most worrying symptoms to me, and what has given me the most pause in thinking about how undiagnosed celiac disease was affecting my life, are the emotional and mental differences I experience.
Since going on the GF diet the biggest difference I have noticed is in my mood, energy level, and ability to focus. Getting back to my cat, Bill, passing away a few months ago, this was something I knew was coming for a long time. He was old and ill and I knew he didn’t have a lot of time left. When I said goodbye to the other cat, Weener, back in 2014, I was devastated. I was really just horribly upset for months. I cried in my office and my car almost every day. Then I would come home and pet Bill and worry about him. I realize now that I was putting a ton of mental energy into worrying not just about him, but about myself. If losing one of them was so devastating to me, how was I going to feel when the inevitable happened with Bill? After Weener died, I basically didn’t want to do anything. I just wanted to curl up on the couch with my blankets and Bill and eat ice cream and read books. And that is exactly what I did. I did not feel capable of doing anything else other than dragging myself to work.
For the last few years I have just felt so exhausted, to the point where my doctor was convinced I was depressed. I have a lot of thoughts about the perils of jumping immediately to a mental health conclusion without testing for celiac disease or other potential causes of feelings like that, but I will save that for another post. I convinced myself I had Lyme disease at one point. Diabetes at another. I just knew something was not right. I was having strange episodes of what I can only describe as physical anxiety. Racing heart, general unease, but it was strange because in my mind I did not feel anxious or worried, just like in my mind I did not feel like I had depression. I just knew something was going wrong. The fatigue, the racing heart, the lack of ability to concentrate, just a general slowness and feeling of everything being a bit out of focus. I also felt so emotional. The crying was not like me at all. I am just not a crier. But for those few years leading up to my diagnosis, I felt like some of my emotions were not mine anymore. I don’t know if I’m doing a good job describing this, but it was all very odd. I knew it at the time, but in hindsight, I see it so clearly.
All of this has completely gone away. It went away within one week of starting the GF diet. The two times I accidentally ingested gluten, I felt all of this come back the next day along with blurry vision. It took several days for the effect to wear off.
I find this all quite strange and scary, to be honest. I know that food affects the way we feel, but I never would have guessed that basically my entire emotional state could be so drastically altered by celiac disease. I wonder how many people never find out. Because if that had gone on another year, I surely would have decided my doctor was right and pursued some sort of anti-depressant or anti-anxiety medication. Nothing against these drugs, if they work for people that is wonderful! But it would have been treating the wrong thing entirely in my case.
So when Bill died, I was surprised to find out I was okay. Yes, I was sad and it was a very hard thing to do, to make the choice to end his suffering. But after it was over, I didn’t feel devastated, and I don’t feel devastated now. I feel glad that he had such a great long life and that he never had to suffer any medical catastrophic event before his death. I find that I can look at pictures of him, and of Weener, and feel of course a little bit of sadness, but mostly just happy memories. I have cried about them being gone, but certainly not every day. I’m getting teary now because I am writing this down, but it feels like a normal and appropriate amount of sadness for me and who I know myself to be as a person. The way I felt for the year after Weener died was not normal for me or a healthy reaction. I can only conclude that celiac disease played a large part in that.
If I keep thinking about it, I come up with many things that have changed for me being on the gluten free diet. Joint pain, which had seemed to keep getting worse, is completely gone. I was having some strange tingly feelings in my hands and waking up with my hands having fallen asleep. That is gone. I notice or think of new little things that have changed quite frequently.
As far as my strategy for following the diet, well I basically just don’t eat out at this point. I have found one restaurant that has an entirely gluten free environment (Asian Box– do check them out, even if not GF. The food is fantastic.) I am sure I will find others but I’m not rushing it. There are many restaurants that offer gluten free options, but honestly I just do not trust them. Unless it is a place that specifically caters to this need, I’m just staying away for now. I’m cooking more and I’ve found some brands of products I like. For example Flax4Life muffins! I love those things, especially the cranberry orange. I should probably buy stock in corn tortillas, considering how many tacos I am eating these days.
The last thing I want to mention is my vegetarianism. I have determined that being a vegetarian is easy and being gluten free is hard. Being a gluten free vegetarian is not realistic for me, if I ever want to enjoy a meal with other humans again. So I am relaxing my vegetarian ways to accommodate eating meat when going out or when a friend offers to cook a meal. I had some amazing roasted chicken breast made with some kind of orange sauce on NYE cooked by a friend who made sure to attend to all the gluten concerns. I don’t think I’m going to start cooking meat, or if I do, it will not be frequently. I really like being a vegetarian, but I also like not driving myself crazy. I am willing to make a compromise to that end.
From what I have read, this period of transition is hard for a lot of people. I think I have an upper hand most people don’t have, having adhered to so many diets in the past. I know how to eliminate things. Even so, eliminating gluten is nowhere near as simple as it seems like it should be and the consequences, both short and long term, are dire. The stakes are higher. Having to worry about what is going to have a negative effect on my overly-sensitive stomach is another part I am finding difficult. It’s a big change for me, but I’m still quite happy about my diagnosis. The positive changes are more than enough reward for the effort.