A Celiac’s Grief

Welcome to the first blog post on Kim Dostaler Coaching! 

I attended my first ever National Celiac Association Support Group yesterday. I am kind of in shock that I didn’t know this existed. When I was first diagnosed in 2019, I looked for support groups pretty thoroughly (I thought). There was one being run out of Montpelier but when I inquired it seemed that it was no longer functioning. I have no idea how I missed the virtual one from NCA, but maybe because it was pre-COVID I wasn’t thing thinking remote/telehealth or in any of those terms. 

I am so glad it exists. I think back to the first few years of my diagnosis and I was hurting pretty badly. Not physically necessarily. As soon as I went gluten-free so many of my symptoms cleared up. But I was hurting emotionally, and I was lonely, and I was sad and angry. No, I was f@#ing pissed. And all I wanted was to talk to someone who knew what I was going through. 

When we found the gluten free brewery in our area (one of only 27 in the country) that was the one place where I found my people. We only went a handful of times since it was about an hour and half a way, but when we did it always turned into an impromptu support group. The beer flowing helped loosen the tongues for sure, too. I just felt so validated and seen and among those that understood. I’ve always been someone who yearned for connection with people and this particular connection is like the shittiest super glue you could use. No one understands what we have to go through and the changes we have to make in our lives like other people with celiac.

Last night as I was listening to a few of the folks who were newly diagnosed (within a year or two), I started thinking about the idea of mourning your old life. I’ve mulled that around in my brain over the last 6 years and think I’m ready to put my thoughts down about it.

My father died in 2016, and that pain was unbelievable. And one of the main thoughts looping in my head for the first few months was that I’d stepped through the wrong door at some point. Somewhere along the way I crossed a portal or a threshold or doorway and I changed timelines. If I could just find my way back I could have my father back. It was fantastical and it wasn’t. I truly felt that there was some way of reversing this if I thought about it hard enough. I scanned back in time and retraced my steps and analyzed all of my interactions with him and all of his interactions that I knew about. I ruminated as I would lay on the couch, in bed, at work, in the car. It was exhausting. But also, it kept me close to him in those first few months. I needed something to connect me to him because I was just in shock he was gone. 

In a way, it was the same with celiac. It wasn’t the same level of intense personal pain like a death, but it was a death in its own way of my old life. And I thought and thought about where things went wrong. What path was taken that could be reversed to bring me back to the gluten fold? And I kept thinking, is this really true?? Do I really have this disease? I wondered if they had made an error on their testing.

I cried a lot, those first few years. I remember the first several times eating out or going to my family functions and they were miserable. I thought I was prepared, but it didn’t matter how prepared I was. The tears would inevitably come in a burst as the intense feeling of being left out washed over me. I felt so sorry for myself.

I also made some rookie mistakes. The first time I went to a family event, my nephew’s birthday dinner at my sister’s house, I brought a super healthy meal for myself while everyone else ate pizza. Literally the worst choice I could have made. Here everyone was eating pizza from one of my favorite places, and I had brought African Peanut Butter Stew over quinoa. Come ON, Kim!! What was I thinking?? I had this pile of orange healthy vegetables on my plate while everyone gorged on pepperoni and sausage pizza. I was absolutely miserable and had to excuse myself from the table and have a cry in the bathroom. I felt like I was putting a huge damper on the birthday celebration. 

The first time I ate out was only about a month after my diagnosis (and would be the last for several years. This was Dec 2019, right before COVID hit.) I had found the app “Find Me Gluten Free” and it told me that a fancier pizza place in Burlington had gluten-free pizza that they cooked in a separate wood fired oven. That sounded pretty good to me! So I went all ready to be cool and have fun. It was a big dinner with a bunch of my oldest, best friends so I was excited to see everyone. I called the restaurant ahead of time and they told me to tell my server about my dietary issues. I told the hostess when I came in and she told me to tell my server. I told the server, and at this point in time I was doing things like getting up and cornering the person so I could talk to them alone and explain. I had no idea how much information to give or how much I should grill them.

Everyone started ordering and the hard feelings started mounting. I sat next to my husband and squeezed his hand as the food came out. I stared at the pillowy crusts on the artisan pizza my friends had ordered. Pizza crusts were literally one of my favorite things in the world. What was I DOING being here? My pizza was put in front of me and at that time it was made on a crust by another local company. It was flat and had no crust. I was only able to order a few toppings that could be cooked quickly in the wood fired oven, and those were broccoli raab and sausage. I started eating my pizza, and while it wasn’t bad, my eyes followed my friends pizzas as they passed them around and shared and laughed and made general merry making. I hid it, but I was miserable. I don’t think I can describe the loneliness I felt while surrounded with my best friends. It was like a sledgehammer. And those tears came on like a faucet being switched on and I forced them back, my face hot.

I made it through dinner and we went out dancing. I felt better as I drank my sorrows away (with mixed drinks because NO MORE BEER). The wild thing is that I’m pretty sure I got COVID from my best friend (she had kids) and was down for the count two weeks later with what I thought was the flu. Which was a whole other debacle as I had to check every medicine and ibuprofen to make sure it was gluten free, while being sicker than I’ve ever been. 

When I look back on those years, my husband and I talk about how I (and him too, really) was mourning my old life. I loved gluten. I will expound upon that love affair in another post, but for now just know that I was a gluten goblin for a large part of my time on this earth. I had been on the healthier path and had cut it way down, but that didn’t mean I didn’t eat three bagels in a row when I had the chance. This intense pain and loneliness of having one of your favorite things ripped away from you can only be described as mourning to me. There was a massive loss and a shift that had to be made. And there is nothing to be done but go through it. The pain and loss has to be felt, experienced and processed. There is no other way. If we bury that and pretend we are fine, that will come out in other ways - anger, anxiety, depression. All of those things that we thought we left behind when we stopped gluten! They will come back and eat away at us. 

So if you are new to celiac, cry. Cry as much as you need to. Miss your food. Miss the connection. It may seem silly to those people that don’t understand or think “it’s just food!” And many people also say “but you must feel so much better now!” Yes, that was true for me, and I know those people were well meaning. But if you love food and you have celiac, you understand it’s not just the food. It’s so much more. You lose the ability to connect the way you used to over food, to participate in normal food activities. Food becomes a highly sensitive topic, when it used to be fun. You lose the spontaneity around food and everything must be planned. And yes, it does all get better; but it’s hard and overwhelming and sad in the beginning.

Those feelings need to be processed and felt. And I promise you, although it’s hard and it feels like you are alone, you are NOT alone. And you will move past that haze of sadness at some point and all of a sudden you won’t cry when you go out with your friends. You’ll know exactly what to bring to a function so you don’t feel left out and you actually enjoy yourself. It won’t be the same, but it will get better. Celiac’s oath!