Gluten-free sucks.

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I am bitter in this post, but I won’t apologize for it. I’m done apologizing for it.

Gluten-free is not a choice for me. It is a medical necessity. I get very sick when I eat gluten. Nowadays I am sometimes sick even when I don’t, which means I need to eliminate something else from my diet, although I am not sure what yet.

Going gluten-free has been an incredibly isolating experience for me. I used to love going out to dinner, and now I have to consider menus deeply before a nice meal out is even a possibility. I used to love to bake, but all of my recipes were based on wheat flour, and the gluten-free baking I have done leaves me really depressed because the texture and density are all wrong.

I hate imposing on the people around me, but I can’t just “cheat” anymore. I admit to some cheating at the beginning, and there is no excuse for it. I was angry and sad and wanted to eat whatever I wanted to eat. One of these times was in 2008 when I was in Scotland, and I had a bagel. It was magnificent and it didn’t make me sick. I don’t have an explanation for that. In a way, that fluke was worse, because it made all of this seem very arbitrary.

But it is not arbitrary. When I am lazy and don’t double-check when ordering food, I get sick. Now that I am actively avoiding gluten, when I ingest it I get extremely sick. It is awful. Not only do I have extreme gastrointestinal symptoms, but I am lost in this brain-fog. Work is barely possible from the fog; attempting to do homework is just comical. I get headaches that don’t go away for days. I have trouble sleeping. I get an incredibly itchy rash on my arms and legs — think chicken pox, that level of itchiness, the kind that requires active thought to avoid scratching.

The worst part is not getting sick but controlling every aspect of my food intake so that I never fully enjoy eating anymore. I am always conscious that even when gluten is not supposed to be in something I am eating, it could be, unless I prepare it myself from whole ingredients. I probably should do more of this. I know there are many wonderful blogs and cookbooks about gluten-free cooking. Sometimes I don’t want to think about cooking every meal for myself. Sometimes I just want take-out like a normal fucking person.

These days I wish I didn’t have to eat anything. Eating used to be one of my favorite things to do, and now I hate it. I used to love to share meals with people, to discuss every little aspect of flavor and preparation. Now I feel guilt for only being able to accompany people to certain restaurants, and resentment for only being able to order certain things.

This isn’t a poor-me post. This is full disclosure. This is an explanation of why my feelings get hurt when it seems like this all is some fad diet of mine, or even a diet that I chose because I wanted to be healthier. I didn’t choose this. It chose me, and I hate it. I hate it every day and I will never get used to it. I don’t want a pat on the back and I don’t want to hear about how gluten-free is better for me anyway. It is a prison sentence for a crime I didn’t commit. I don’t want to decorate my cell with handmade doilies. I just want out.

19 thoughts on “Gluten-free sucks.

  1. Lili

    Sometimes I don’t want to think about cooking every meal for myself. Sometimes I just want take-out like a normal fucking person.

    …yes, exactly. I am so tired of having to think about every single meal, and a roommate that gets gluten on everything in my kitchen multiple times a day, so most of the time I end up only eating things that are sealed in packages. :/

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    • Lili

      I think you responded , but it doesn't show up for me. Yes, it is totally a retraining issue, not malicious or anything. It just doesn't take.

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  2. My younger brother, a Type 1 diabetic, felt the same way after he was diagnosed. In fact, that year, the most popular book at the school library was “You Can’t Catch Diabetes From A Friend.”

    Kübler-Ross grief cycle. You’re somewhere past Anger, but probably not quite to Bargaining.

    I sympathise. I have a strong-bad gluten sensitivity, but am not nearly as reactive as you. I feel better when not eating bread…so my habits have naturally stabilized to non-wheat products (pao de queijo is a huge fav). Hopefully you’ll get there, even if the pain never ends.

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    • Thank you, Joan. You've got something there with the grief cycle. I had hoped I would be further along on the cycle by now, but there it is.

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  3. Emmy

    I feel your frustration. And don't get me started on the cost of gluten free food. that is where I start to loose control.

    Food can be your enemy. We all have to eat but for some of us every day foods are poison.

    When you know you have been gluten-ed be sure to take the enzyme DPP-IV. It works specifically to break down gluten and diary proteins. It doesn't do much for my guts but it really does help the mental distress. It can be found at health food stores, you know the same place you go to buy bread for $8.00 a loaf.

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    • You're right. I didn't even mention the cost of gluten-free food, which is infuriating. I understand the reasoning why it costs more to make it, but it still means I have to pay a "tax" on food that doesn't kill me.

      I will try the enzyme you mentioned. I have been avoiding it because I hadn't read definitive research on it yet.

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    • My first blog ovation!

      Seriously, though, I am glad this resonated with you but also sad … I don't want anyone else to go through this.

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    • Teff! I should use teff more often.

      Thank you for your kind words and thoughts. I am feeling much better about all of this today, in no small part due to comments like yours.

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  4. David

    As someone else mentioned, diabetics get this way too. Welcome to the club. Remind me to teach you the secret handshake 😦

    There are days where I'm so bad that I actually dread eating, and only do it because I know I can't take my medications on an empty stomach. And pricing on sugar-free products works the same way as gluten-free products. They should include a free cigarette in the box for you to have after they screw you.

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    • The first time I had ever heard of a medically-restricted diet was in grade school. A friend of mine was diabetic. When he told me the foods he had to avoid because of sugar content, I was dumbfounded. I cannot imagine how difficult it must be to live sugar-free — much harder than what I go through, and as you can see, I don't always handle my restriction with grace and aplomb.

      I wish I could discount sugar-free and gluten-free products across the board.

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  5. CoffeeBean

    I was diagnosed about 2 months ago, and your post is the first indication that anyone understands how I am feeling. Thank you so much for posting this. I used to love food, too, and now most of my friends and family seem to think this is a 'cute' faddish diet that I could cheat on if I really felt like it. They have even implied that I use it to control the choice of restaurant when I have no other choice if I don't want to be hopelessly I'll. I have been so depressed, and I am so grateful to see there are others feeling this way. Thanks!

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    • You're welcome. I just want to say that it does get more manageable. I only have outbursts like this every once in a while, whereas at the beginning it was a weekly thing. If you ever have any questions or need any support, please just contact me. I am on the Celiac.com forums too (as cygnoir).

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