This is the end of the story, I think. A twist worthy of M. Night Shyamalan in high fettle; a Rashomon-style reframing of everything that has gone before. In order to understand where I've been, it would be best to start at the beginning, with the deglutening. You have to understand how sick I was, how desperate for help. You have to understand how transformative the deglutening was for me.
Or... how it inevitably looked that way, at least. Because I think I was wrong. The whole time, I was wrong. Gluten may have never been the problem at all. And yet the evidence was insurmountable. Every time I was a little daring, the result pointed to the one deadly culprit. How could I have been so wrong, for so long?
This winter past, my mental health took a nose dive and stayed there. It was a long and brutal winter, and various personal stresses made it worse than just the weather. I made an appointment with my physician with every intention of talking to him about medication.
The day before my appointment I realized I'd been there before, exactly there. This was a familiar feeling. This was me crying in the parking lot after the endocrinologist told me that having my boyfriend take me out to dinner would solve all my problems. Oh, right, you again.
Instead of asking for benzos, I asked for him to check my Vitamin D levels. He did so, surprised at the request, but willing to humor me. My D3 was on the very low edge of normal.
I started taking ridiculous quantities of Vitamin D and was reborn.
I've long known that many of the problems I suffered before the deglutening were the result of my appallingly low D levels. The hair loss, the anxiety, the menstrual irregularities. But celiac disease and gluten intolerance are very frequently comorbid with vitamin deficiencies -- malabsorption of vitamins, right? The course of the disease wears away at the finger-like lining of your intestines and makes it difficult for your body to absorb the nutrients in your food. (I have a long-standing B12 deficiency, too, for all that I've never been a vegan.)
So while I was aware that many of the symptoms were fixed by those lovely D3 pills and not by removing gluten from my life, the fact of the D deficiency in the first place was suggestive of a gluten problem.
And D3 couldn't explain why my stomach aches went away, right?
Surprise Abdominal Surgery
Earlier this month, I got a really, really bad stomach ache. Long story short: within four hours of onset I'm at the emergency room and on opiates en route to being admitted and having my gall bladder out. I was in the hospital for about three days, in all.
Afterward, the surgeon told me that not only was my gall bladder completely filled with stones, the bile in it had turned white. There was a lot of scarring, to the extent that she had trouble cutting through the bile ducts to remove the damn thing. My gall bladder clearly hadn't been doing anything useful for a long, long time.
Quick biology lesson: Do you know what your gall bladder does, exactly? It stores, concentrates, and releases bile from your liver into your small intestine. Bile is the substance that allows your body to digest fat and absorb the nutrients from it. Nutrients like, oh, I don't know... vitamin D. Without bile, many unpleasant digestive things can happen to you when you eat fat. I won't spell them out for you, because it's gross, but... yeah.
Now, in the post-glutened era, my stomach aches were tremendously better than they had been, but they were never really gone. We all kind of shrugged and thought it must be Irritable Bowel Syndrome, which is one of the diagnoses a doctor will give you to explain away digestive problems that don't appear to be killing you but that they aren't sure what else to do about.
I knew I'd always had problems with too much dairy fat. My mother fed me skim milk as a toddler because I couldn't tolerate full-fat, and though I love coffee with cream, I suffer for it.
The day after I came home from the hospital, gall bladder newly removed, I ate a bowl of ice cream with hot fudge. And I was fine. Huh.
Clues and Evidence
Even before the gall bladder surgery, I'd formed a theory that my gluten tolerance had improved, or, or... something. I'd eaten a few things that were known to be cross-contaminated with no apparent ill effect, and so I'd been "chancing it" in restaurants more and more. And it was OK. I also wasn't getting sick when I forgot to put foil down in the toaster oven. The theory was that my intestines had finally healed enough to tolerate some small amounts of gluten.
But then my gall bladder came out, and suddenly I had a new lens with which to look at everything that had come before. And I formed a new theory, that I will now share with you: it was never gluten at all. It was fat the whole time.
Consider what you give up when you go gluten-free. You eschew fried foods, because in a restaurant, the same oil is going to be cross-contaminated with flour from the battered chicken tenders or onion rings. Creamy sauces (thickened with flour!) are right out, as are cream-based soups. Gravies are gone, as are most desserts. When you give up gluten, you eat a lot of salad, a lot of grilled stuff. Sorbet and fruit. At home I made roasted chicken, spaghetti with corn pasta, pancakes, curry, grilled fish, rice and beans.
So I went gluten-free, and I felt a lot better right away. My first gluten challenge was the night I ate a ton of bite-sized Halloween chocolate. I felt terrible again. But it maybe wasn't the malt syrup in the candy, it was just the cocoa butter.
I tested again some months later, trying some chip dip made with Lipton's Onion Soup Mix and just a few cookies a friend had made for a party. And I felt awful for a week. But it wasn't the barley in the soup mix, it was the sour cream.
I would eat the tortilla chips from Moe's or the French fries from Wendy's and feel like death for a day or two. But maybe it wasn't the cross-contaminated oil, maybe it was the oil itself.
I felt sick after eating my own home-made gluten-free pumpkin pie. I couldn't work it out, until I realized I was using a cookbook with wheat flour still covering the pages. A-hah, cross contamination! But maybe it was the butter in the crust the whole time.
And when I felt ill after a meal at a friend's or relative's house, despite my hosts' best efforts, maybe that wasn't accidental but inevitable cross-contamination at all. Maybe it was just the richness of a celebratory spread, too much for my feeble and diseased gall bladder to tolerate.
You see how easy it was to arrive at the conclusion that it really was the gluten? You see how the evidence supports either theory equally well? This, my friends, is why science is never set in stone. Sometimes you aren't asking the right question.
Maybe it was never the gluten at all. Maybe it was always, always the fat.
Saturday night, we ordered pizza from my old favorite pizza place, the one with the most delicious chewy crust you can imagine. I followed it up with a Cinnabon roll. And I was... you know, OK. The next morning in a fit of jubilance we went to Cheesecake Factory, where I had sourdough and French toast. There has been no moderation. And I have been... you know. Fine?
I have not been suffering. After that chip dip and cookies incident, I was so sick I felt like I had the flu for a week straight. But it looks like... well, you know.
I am having a very strong emotional reaction to this turn of events.
Food isn't just food, or we'd all be happy with Soylent. Food is love, it's belonging, it's joy. Food limitations are hard, because those limits end up restricting so much more than simply how you fuel your body.
I'll be honest, I'm a little bitter about the doctor who suggested gluten-free, for all that he was my savior at the time. And bitter about the several doctors who shrugged at my vitamin deficiencies and never thought to investigate further. The ones who were disinterested in anything related to my stomach or my bowels, who actively discouraged me from investigating, some dozen years ago when I still remembered it wasn't normal.
In my three years and eight months without gluten, I was known to say at least a couple of times a month that I wished I could give food up entirely as a bad job. And you know, sometimes I pretty much did give up. At WorldCon, I ate the same nachos from the hotel bar four times in five days because it didn't kill me outright the first time and I was too afraid to chance anything else.
And I'm afraid now. I'm really, truly, super-duper afraid that I really was right the first time, and that it really was the gluten. That my gut has healed up for now, but by eating poison again, I'll abrade it away bite by bite until one day the penny will drop and I will not be fine any more. I'm afraid to hope. I'm afraid to get used to this in case it's not real.
But for now... for now, I have a corpus of data, and all I can do is interpret it the best I can, and make decisions I think I can live with.
Yesterday I realized I could have chicken nuggets from McDonald's if I wanted to, and reader, tears sprang into my eyes. As I wrote this, I suddenly realized I could have any kind of sushi I like, not just the shrimp California or the plain salmon and tuna rolls I've been reduced to. When I wrote about that bowl of ice cream I realized I can have a waffle cone again.
Ramen noodles. Soft pretzels. Bagels. So many, many sandwiches. This isn't really about food, this is about liberty.
There were some crumbs on my table this morning, and I hesitated a good long moment, then swept them into my palm to throw away.
This is going to take some getting used to. But I think I'm... fine. Better than fine. I'm free again.
I really hope it lasts.