This is a close-up of vegetables and fruits.

Why I don’t want to eat at your party

“Can’t you just pick out the parts you don’t want to eat?”

Considering that I can neither see, taste, nor smell the parts that make me sick, I’m gonna go with No. I’ll just eat the stuff I know is safe for me, thanks.

“Oh, well, a little bit never hurt anybody, right?”

Would you please tell that to my gut? It still hasn’t clued in on this concept. The last time I thought that, I had the most horrific bathroom problems for three solid days, I didn’t sleep right for about a week, had awful Depression that whole time–which cleared up once the gluten got out of my system–and was losing nutrition in my body for that entire time, since my GI tract was so inflamed that it couldn’t absorb anything, thereby throwing my body into starvation mode, no matter how much I did or didn’t eat. I had brain fog for a week, where I just couldn’t think, and I could barely function at my job. I had insomnia and fatigue at the same time, and during all of that, I was driving on the same roads as you. But hey, you know what? Thanks for your expert  advice, and congratulations on your new medical degree. I’m sure you’ve been studying up on this WAY more than I have since my diagnosis three years ago.

“I know you have gluten issues, so I made this thing just for you.”

You made this for me? You thought me when you didn’t have to? I’m so grateful I could burst into tears. Thank you. Thank you so much! It’s just…before I take a bite, did you check all of the other ingredients, too? Besides the most obvious ones?  Your marinade was made with soy sauce, whose second ingredient is usually wheat. And this has white vinegar in it, which could have been made with malt (barley), but we have no way of knowing–sometimes even the manufacturer doesn’t even know. And you’re right: oats are naturally gluten-free, but here in the states, oats are stored, transported, and processed in the same facilities as wheat, rye, and barley, which means by the time they hit the shelves, it is entirely possible that the oats have more gluten ON them than wheat has IN it. I know, this is weird and gluten has no business being in these things, but it is. Welcome to my world. It took me about two years to find all the hidden ways gluten was still sneaking into my diet. I don’t expect you to pick it all up in one afternoon. But what that means is that while I am SO GRATEFUL that you brought this dish with me in mind–seriously, you have no idea!–I cannot safely eat it. Unless it was prepared by someone who understands what gluten is and where it hides, I don’t want to eat it. But thank you so deeply for thinking of me.

“Well, we have a salad. You can eat that, right?”

Oh, gods. Another one? Why can’t I eat a normal meal like I used to? So sick of salad. This party is full of the most amazing foods. I mean, the smells alone are sending me into heaven, and breaking bread together is such an important part of human community building, and I so want to take part in that. I’m not on a diet. You guys are all eating these fried/breaded/baked delicacies, and I wish I could have just one more bite, one more taste of golden, greasy goodness, to share in the communal offerings… But not even one bite is worth the health risks I’m facing. I don’t want to eat myself into dying from malnutrition or even just having bones so brittle they snap under any stress. I don’t want to get osteoporosis or anemia. I’ve seen what that does to people. I don’t want to lose so many nutrients that my hair falls out or I can no longer think straight. And I really don’t want to spend the next three days in the bathroom. Besides, checking the salad dressing you’re offering, I see that it was made in a facility where the manufacturer cannot guarantee that some wheat didn’t get into the mix, meaning this stuff may be horribly contaminated for me, even though you cannot tell the difference. This means I get to eat my veggies raw. Again. But there is literally nothing else here that is safe for me, so Salad would be lovely. Thank you for thinking of me.   

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5 thoughts on “Why I don’t want to eat at your party”

  1. So… asking honestly, what do you eat? Do you eat something from a gluten free restaurant? A gluten free item from a non gf restaurant? Because they could have put something bad on it too, without knowing.

    Sometimes we go out of our way to make sure we have something for you, because we want to be a good host/hostess. (And honestly, sometimes salad is all we know how to do.) But if you’re not going to eat it, why should we try?

    I’m sure I don’t get how limiting food issues can be. And I would never suggest you try “just a bite” or feeding you the things that would make you ill.

    But maybe you could let us know what you will eat, because honestly, I don’t want you to go hungry when you come over. Eat drink and be merry doesn’t quite work when it’s starve and try to fake a smile. I don’t want you to have to do that. So, if we ask, “What would you like?” let us know. I would never try and feed a person with diabetes something that would throw them out of whack, but I will try and make sure I have something in the house that will work. I’ll do the same for you if you let me. (And if you need us to keep the ingredients list for you to double-check, I will.)

    1. First of all, thank you for asking this. I have cherished our friendship for years, and the fact that you are willing to even ask is one more brick in a beautiful structure. Thank you.

      A few weeks ago, a friend of mine came to visit from out of state. She has colitis, which means she has to be just as picky (in a different direction) as I do about food. It drove me nuts! I wanted to be a good hostess, but she just kept saying that she’d take care of herself, because her diet was too complicated. That was my first taste of dealing with this from the other end. All this to say, I hear you. I get where you’re coming from.

      It’s difficult to answer. On the one hand, without going into specifics, I can probably trust most items sold at the grocery store that are vacuum sealed and labeled as certified gluten-free. On the other hand, there are a lot of products out there that ARE GF that taste like sawdust. LOL Then again, there are products out there that taste phenomenal. Not that I’m trying to be picky, but I don’t want you to spend your money on something that I probably won’t eat, you know? We can talk specifics offline, if you want.

      Restaurants are hit-and-miss. The ones that are completely GF are safe for me, but few and far between. There are some that serve both and are extremely careful to guard against cross-contamination. (Spaghetti Factory is actually awesome about this, as long as you’re clear that it’s an “allergy” and not a preference.) There are others (Olive Garden) that have a GF menu comprising of, well, salad. And others that cater to the trendy crowd, and have no idea that boiling my pasta in the same water as regular pasta will still make me sick. It takes a lot of experimentation. 🙂 Basically, it’s a LOT of footwork and a real pain in the ass, and I’m willing to do most of it, because it directly affects me. If you are willing to dig into this with me a) bless you! and b) I’m willing to discuss with you. <3

    2. Also, another solution is that we are living in a time and place where there are GF alternatives to just about everything. I haven’t found egg rolls or puff pastry, but I can find just about everything else. If you tell me what you want to offer, I can dig it up and even bring it over. We can heat it up together or I can make it in your kitchen., and there it is. Regardless, though, feeding me will always require extra work. Thank you for being willing. <3

  2. You are learning so much and bearing so much and trying so hard. Those of us who love you applaud you AND we have not been there so we keep making dumb mistakes. The folks who love you are sorry and will try harder and do really take this to heart. The ones who don’t really aren’t worth the effort anyway.

    However, I do have a question for the discussion. Do you have a support group who understands first-hand what you are going through? It can be so useful to talk with folks who are coping with similar issues and get some tried and true ideas. I know you are a consummate researcher so you probably already know about these things. But, if you have not found the support groups as yet, here is a place to start: https://celiac.org/socal/about-chapter/
    I suggest you only because, as an only child who moved around a lot, I did not have build in family support when I got to new challenges and I often found finding the experts (meaning those who have been there) was a huge help in terms of being understood more fully, finding practical advice, and just feeling normal in my new challenge. Likewise, those who have been there in your area probably know the medical folks who actually understand and can offer medical help and advice.

    As Kermit said, “It isn’t easy being green!”. But, it is worth it to learn how you need to be cared for. In the meantime, let us be on your side because your health is SO worth it!!!!

    1. They’re not dumb mistakes. Just mistakes. I made the same ones. 🙂

      I’ve been to two meetings with the group you listed. Good people.

      There’s still a lot of research being done into Celiac. My doctor basically told me the only thing I can do at this time– the only thing available– is to simply not eat gluten, but according to folks at the CDF, that doesn’t seem to cover all the bases. A lot more research needs to be done. Still, I’m keeping abreast of it, as it comes out. 🙂

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