Food.
First I eliminated dairy. That didn't help. Then I got rid of sugar. That also didn't help. Then I decided I was just fat and needed to lose weight. So I cut all the carbs from my diet and I noticed I had some more energy and I began to feel better. But then I got hungry and went back to the pasta, my old friend. And my symptoms returned full force, worse than before. I was telling my friend about it and she sent me a list of celiac symptoms and wondered if that looked familiar.
At first, the idea that gluten might be causing these very uncomfortable symptoms made me feel nervous, but hopeful. I just wanted to feel better. I was worried there might be something seriously wrong with my health. And after a couple weeks without gluten, I began to feel better. After several weeks I felt better than I had in years!
And then I slowly began to have gluten-like reactions to gluten free foods. And sometimes to other foods that made no sense at all. It took lots of trial and elimination and reading labels to finally determine it was xanthan gum causing a reaction. Each exposure seemed to get worse, and then there were continuous reactions. Rashes, eczema, digestive issues, brain fog... And that's when I discovered that xanthan gum is in everything. Food, spice blends, dressings, gluten free food products, makeup, hair dye, soaps, fruit juice, ice cream, toothpaste, lotion, medicines....EVERY.THING.
I'm sure most people don't even know what xanthan gum is, I sure didn't. The easy answer: "Xanthan gum is a food additive created by a sugar that’s fermented by a bacteria. It’s a soluble fiber and commonly used to thicken or stabilize foods."
It was determined safe by the FDA and so there are no limits to how much of it can be used in any product. And get this:
While xanthan gum is safe for most, there are a few people who should avoid it.
People With Severe Wheat, Corn, Soy or Dairy Allergies
Xanthan gum is derived from sugar. The sugar can come from many different places, including wheat, corn, soy and dairy (16).
People with severe allergies to these products may need to avoid foods containing xanthan gum unless they can determine what source the xantham gum came from."
So that's fun. The last time I accidentally used a skin care product with xanthan gum in it, I broke out in an exzema type itchy rash around my eyes. And the last time i accidentally ingested it, I was short of breath, had diarrhea, rapid pulse, and brain fog for the next day or so. This is not a thing I ever want to deal with again.
So, I have to read every label of everything that I buy. So far I've had to throw away most of my favorite personal care products. I cannot eat most gluten free breads, pizzas, or other GF quick foods.
Between the Xanthan gum thing and the gluten thing, eating in restaurants or at other people's homes is too risky. Thanksgiving at the family gathering? Nope. I don't trust anything I can't read the label for or watch being prepared. What if the person cooking forgets or isn't aware and uses something that can hurt me? I just don't want to chance it.
So this is where my depression kicks in. Food is a necessary part of life and I am scared of it. Every time I eat, I obsessively check labels. My heart races with anxiety each time I eat something, because I'm scared some new thing will be rejected by my body. Like...What's next? I feel so vulnerable. I can't just eat whatever is cheap during a rough financial month. If we run out of hurricane food, and the national guard comes to give out MRE's, I can't eat them. What would I do? Starve?
I've stopped going to my favorite restaurants in town. My date night favorite activity is now gone. I love to cook for people, to eat with friends and family, to celebrate with food. Who the fuck wants to eat gluten free food? No one. I make a GF version of meals and the rest of the family gets the real version. That's not sharing.
I loved Anthony Bourdain and I felt like he was bringing humanity together by sharing food. I aspired to visit and eat my way through Europe, and now all that is gone for me. If I want to travel, either I must bring my own food, or be sure that I can check ingredients of every food available. I also have to be mindful of traveling to places that don't typically offer the kinds of foods that are safe for me. For example, traveling to New Orleans last year was scary for me because Louisiana isn't generally GF friendly by nature of the local cuisine, and restaurants there aren't prepared with GF menus or even allergen lists. If I were to travel out of the country, I'd have to do heavy research to find reataurants and grocery stores that I could find safe food in. And then there would be the issue of whether or not that country lists ingredients the way we do. Would I understand it? Would they list absolutely everything? Would the locals consider me rude for refusing a dish, or asking questions about what was in the food?
Many years ago my anxiety was so bad that I became agoraphobic. My world was very small, and I could only go to a couple places that my brain decided were "safe" without having a level 10 panic attack . And I feel that same fear creeping in again. I feel like I don't know who I am anymore without familiar foods. I can't make pierogies on Christmas eve. I can't eat all the familiar foods I've made for my family. My entire life I have been cooking and eating the same things, and now I have to either relearn the recipes in a safe way, or eliminate them all together. Other foods that I miss being able to have like sushi and various Mediterranean dishes, I have to learn to make myself, in a safe way, and that way is not quite the same. It's all pretty intimidating. I've cried a few times over all of it, and I feel silly, or crazy, for being so upset. Why does this feel like a part of me died? It's just food, right?? Just eat salads, Kerry! Its no big deal!
But I'm mourning. I'm seriously mourning the loss of familiar food, and dreams of traveling, and the safety of knowing for sure what I can and cannot eat. I'm mourning going to dinner with my husband, of taking my kids out to ice cream when something sad happens. Of stuffing myself at family cookouts. I'm mourning Starbucks, and potlucks, and fair food, and taco shacks. The joy of food is gone and It's replaced with fear.
Today my sweet and thoughtful, observant husband took me to a local fish market I had never been to, that has sushi grade fish, and stuff to make sushi at home. I was so happy to see foods there I could eat! And then he took me to a Vietnamese market, where I discovered a million different noodles that are NOT made of wheat or anything else I can't have! It was amazing! I have no idea what to do with any of it, but the possibilities are exciting! I feel like maybe I can discover new foods to love and share, and maybe if I can't learn to safely make some of my old favorite comfort foods, maybe there is a whole world of new favorite foods ahead of me if I just open my mind. I have some hope after today. It was such a small thing for him to do, just to take me to look at new foods. But it ended up being a really big deal and the first time I have been able to form whole, coherent thoughts and feelings about all of this.
I have this smug little saying about being adaptable that I am now telling myself.
"If you can't have what you want, then want something else."
So I'm trying to want something else. I'm never going to be my former self. This is me now. So I'm deciding to let my hair grey, since hair color is full of fucking xanthan gum and bullshit, and my hair is falling out from stress. I want to go camping more- I can travel, see the country, and bring my own food. I can camp with family and friends. I can travel to countries that have similar food labeling laws. I can learn to cook new and exotic foods from places I will never go. I can surprise my family and friends with what I've learned, and maybe they will find a new favorite thing that I can bring to their potluck and I will be famous for it. I can teach my daughter to eat clean, because that's just how it is here now. Maybe she will learn to love healthy food more than processed food. Maybe even Shawn will like some of this stuff.
I will probably live through this. I will probably look back and be like, "meh. Whatever." That's how it is for me now when I look back on losing bell peppers, and melons, and cucumbers from my diet. I don't give a single shit.
I should probably go back to therapy anyway though.
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