Truth is, I knew I was celiac for at least three years before I was diagnosed, I just didn’t want to know it. At that time, in the era before good web searches and tireless wikipedia editors, I didn’t know how bad celiac disease really was. Then again, I’m not really sure anyone did.

When I was a kid, people thought celiac disease was something you had as a kid and “got over.” I kind of adapted in weird ways: I ate my sandwiches on white bread (less protein and thus less gluten) open-faced (one piece of bread instead of two). I ate lots of pasta sauce with very little noodles. When I made lasagne, I used half the noodles and twice as much other stuff. I preferred corn muffins and oatmeal cookies (but with chocolate chips). I’d use corn tortillas for my sandwiches. In other words, there were ways I was unaware of that I tried to reduce my gluten consumption. My dad was constantly nagging me to eat more grains, but now he admits he was wrong on that point.

And then there was the time I went vegetarian. I think I lasted a week or two, probably mostly because the wheat germ made me so very ill. It still makes me shudder.

There wasn’t a history of celiac disease in my family. My father carries some of the genes; my mother doesn’t. My stepmother noticed that I sometimes came back from visits to my mom with stomach cramps. I was sent to a shrink as it was believed to be psychological. It wasn’t, it was dietary. (I don’t actually remember the symptoms, I just remember the outrage of being sent to a shrink over it.) I was eleven at the time, so I know I was symptomatic then, but I don’t know when the symptoms actually started, only when they were noticeable by other people.

Even after I was diagnosed (at the age of 37), I would have moments of weakness. Some celiacs vomit up gluten. Lucky them, as it does less damage that way. Some get cramps within an hour. Lucky them.

And then there’s me. My symptoms take two to three days after gluten ingestion, so you can see that would be difficult to correlate food with symptom. Who remembers what they had to eat in detail 2-3 days ago on a regular basis?

There are certain foods I miss a lot. 

At the end of the first week I was gluten-free, I missed two things: pizza and chocolate chip cookies. I made a passable pizza from scratch (my first), but the cookies were awful. I didn’t know the difference between potato starch and potato flour and made the grittiest, most awful cookies such that a house full of college students wouldn’t touch the damn things.

I miss croissants and chocolate cake in particular. Sure, you can make a passable chocolate cake without gluten, and Miglet’s bakery does a great job, but it’s not really the same thing. Sadly, croissants are simply beyond what non-gluten flours can do. Actually, I did hear a rumor that someone in either Australia or New Zealand made a passable croissant without gluten, but I remain unconvinced until I try one.

So, for years, we’d go out for lingonberry pancakes every once in a while. I’d have my birthday croissant. I’d occasionally eat something else sinful, and it was touch and go whether I’d hit the bread basket in a restaurant if I was really, really hungry. Now I have the strength to push it away from me (they always put it in front of me, it’s like being the person in a room who doesn’t like cats).

I’m not talking a lot. I’m talking about a slip on average once a month. Later on, it was more like once every two or three months, but it was a significant slip: an entire non-compliant meal in the case of the lingonberries.

Lest I sound like a complete idiot for the above admission — I know of more than one celiac who, when he or she gave up gluten entirely, developed a life-threatening gluten allergy as a side effect. Thus, I thought, maybe it is better to have low occasional doses of gluten.

When I saw Dr. Murphy’s video, though, it stopped me cold. I’m still not perfect, but I feel better for the more strident and continued effort. Unfortunately, it meant food felt more like a war zone than it had before.

On my last trip to Hilo, it was really difficult. Everything’s got soy sauce or teriyaki (which is derived from soy sauce) or some other form of gluten.  This time, I picked more carefully and was able to avoid the land mines, but I nearly had an oops when I saw that McDonald’s was serving banana pies. I love hot bananas, and I love pie. One dollar and you can have both. Grrr!

I was thinking about this earlier: I probably need to make a list of foods I associate with gluten that I really, truly love — then figure out a way to work them into my food plan in some gluten-free version. I think I’ll just bronze a croissant, though, that’s a lost cause.

I also remain unhappy with all my lasagne options thus far.

With that exercise, I’ll probably discover that there’s some aspect of foods that I like where there’s some common thing I haven’t thought of.

For example, Rick and I were talking about some foods I didn’t really like. I’ll eat zucchini, pick at it more like, but I’ve never been a fan. I love the smell of cucumbers, but not the taste. The common aspect to both of those is simply that I don’t like the sharp tang they have to me. I don’t like bitter tastes for the most part. So, weirdly, I don’t like cucumbers and I don’t like vinegar, but I do like the occasional dill pickle, because the taste is more than either cucumber or vinegar or the combination of the two.

I’ve never really heard anyone else talk about having trouble staying compliant. Maybe they’re more like me than they’d like to admit, but it sure seems that most people have much more immediate gluten reactions; I’m not that fortunate. For me, these days, it’s more the emotional reaction: it’s not fair, and it’ll never feel fair. But we forge along anyway.

Getting to the bottom of my medical stuff has been something of a nightmare and has been a multi-year process of peeling the onion. In short, the celiac disease seems to have triggered other stuff, and now I think we’re getting to the last and possibly most critical bit.

Many years ago, I was given a diagnosis of fibromyalgia without excluding other diseases, and fibro’s supposed to be a diagnosis of last resort after everything else is ruled out — and nothing was. I do mean nothing.

For several years, treating it as though it were fibro was enough, but for the last few years, it has not been, and it’s been getting worse.

The good news? I think I finally figured it out. I could be wrong, but I’ve done a lot of reading lately, and I don’t think I am.

So, I found a doctor that agrees with me (thus my earlier trip), but isn’t “in plan,” so it’s more of an advisory role, and there are serious concerns about treating the issue (which I knew). On the other hand, it’s possible that I could get full remission in a few days.

I also got some work done, though I was limited by my doctor schedule and travel logistics.

The event I was coming for is, of course, World Fantasy. So last night I had the opportunity to participate in the mass signing, and I met a local writer who also happens to be a co-worker, so I introduced him to the other sf/f writer co-worker I know. I got Neil Gaiman’s autographs for a friend, too.

Today was my first full con day, and I went to the SFWA meeting at (oh my God) 8 a.m., which went well. As I was leaving, I was just out of it enough that I thought to myself, “Oh, I’m moving well now that the drugs kicked in.” Not five seconds later, I didn’t see that there was a step and took a rather nasty tumble, and I’ve been very sore since. A very sweet African-American teen here for another event helped me up and wanted to know if I was okay.

Because of the pain from the fall, I missed a lot of stuff, and spent the con sitting and talking to people for longer periods and not moving around so much (perfectly understandable). It remains to be seen how well I’ll be feeling the next two days, when the soreness from a fall is generally at its worst. Fortunately, I don’t think I hurt anything seriously.

I have a reading at 10 a.m., and I am now thinking everything I’ve written is crap, and I’m feeling the pressure; I’m reading right before someone I’ve always looked up to and it’s intimidating. I am not sure what I’ll read in the morning yet, but I brought seven things to pick from. I’ll probably read two or three.

I spent some of my downtime this trip reading Steve Jobs’s biograpy. I hope to finish it by Halloween, which seems fitting given the focus of the holiday for me (the annual honoring of people who’ve passed on). I’m going to write a longer post about that when I’ve finished the book. I started reading from the time of Steve’s cancer diagnosis forward, finished the book, then started again at the beginning. I think that’s actually an interesting way to read the book.

I’m going home tomorrow to a newly-repaired car. I have two follow-ups in-plan medical-wise on Tuesday, then a backup appointment on Wednesday with a different doctor.

86% of the time when it was diagnosed as menstrual bleeding, the cause of the anemia was actually gastrointestinal bleeding.

Note that taking iron supplements doesn’t cure your gastrointestinal lining; it’s a bandaid for the wrong problem.

Also, if you’re low on ferritin (iron transport protein), you can actually directly supplement it, which is what I do. (For vegetarians and vegans, sorry, it’s an animal protein, so there is no animal-free option for that particular supplement.)

Second, filtering words. It’s a difficult topic to search for, so here’s a good blog post on it. I don’t like all of her examples, but it explains why adding that layer of indirection isn’t always a great idea.

Third, showers. There I was in the shower this morning thinking it was one of the great wonders of civilization, and I realized I’d never heard (despite reading a lot of Libertarian books in my youth) how either Libertarians or the Tea Party would handle things like sanitation engineering and water management. What changed me from being Libertarian was seeing that public health simply wasn’t doable that way, and Laurie Garrett’s The Coming Plague was the final nail in the Libertarian coffin for me.

Despite my face being sore from the trauma, I feel so much better, enough so that I took a walk to help reduce the post-lidocaine shakes. That alone says how much better I’m doing.

I’ve become convinced the issue is deeper than that. In 2005, I wrote about a protein called Zonulin. In short, it determines how permeable your intestines are. My hypothesis (which apparently doesn’t apply for celiac disease, and possibly not for most cases of type 1 diabetes, either) is that it is an anti-starvation mechanism.

Catch is, letting in more stuff from the gut lets in a whole bunch of badness — the so-called leaky gut syndrome is, in fact, real. Elevated zonulin levels are also associated with some nasty autoimmune diseases other than celiac disease, including type 1 diabetes, multiple sclerosis, and rheumatoid arthritis.

I didn’t really spell out my hypothesis in detail before, so here goes:

1) You think you’re overweight (whether you are or not may not be important in this scenario).
2) You diet.
3) You trigger your body’s starvation reflex.
4) To avoid starvation, your body produces more zonulin to gather all the nutrients out of your gut.
5) This lets bacterial toxins in, as well as, well, crap, including stuff your liver’s already ejected.
6) Said toxins, after entering your blood stream, wreak havoc in your immune system.
7) You could eventually wind up with an autoimmune disease as a consequence. Which one is a matter of which toxins trigger which genetic expressions.

If there’s any truth to my hypothesis, dieting may be a Really Bad Idea. In my own experience, when I’ve been successful, it’s been careful control of exercise as well as portions.

Given that women seem more prone to dieting (Goddess knows I went on my fair share of diet fads as a teen), it might even partly explain why women are more prone to autoimmune diseases like MS.

One correction I need to make on my earlier hypothesis: the anti-equatorial factor in MS prevalence seems to be related to Vitamin D rather than starvation.

The clinical trials for larazotide acetate, a Zonulin inhibitor, have reached stage 2b, and there’s been some speculation that it could go on the market as early as next year. I know what I will be lobbying for the moment it comes out.

And, for a few days, everything stopped hurting, though the legs had this oddly pliable feel that was disconcerting, to say the least, given your usual stiffness. You felt it particularly when you went up and down stairs, wondering if your legs would collapse underneath you. They didn’t. When you were near the end of your course and the shingles was on the mend, you started taking walks because, hallelujah, you didn’t hurt.

Then you went to the doctor saying that you think you don’t have fibromyalgia after all — gotta be something related to inflammation, at which point the rheumy consult thought you were bonkers, saying that if you had MS or Crohn’s, you’d know it. Your main doctor gets the point, though: fibro’s not an inflammatory disease. She orders an inflammatory panel and advises you to wait a few weeks to get the blood draw for so your system will return to its normal state after all the drugs she’s just pumped in. Also, you’ve had this strange low-grade fever that comes and goes for a few days at a time, but this problem’s been going on for years.

Last Friday, you had your teeth cleaned, and you apparently have a bad dental abscess from that root canal you had ten years ago, one root of which was never able to be killed off and is apparently flailing in a great pile of painless unhappiness, so the dentist makes endodontist invocations and materializes a scrip for antibiotics. So you haul yourself down to the HMO and wait in their never-ending line so you can pay less for the stupid amoxy, and then you’re about to ask for the blood draw — and you realize, huh, what if this really is the same issue? Better wait until after the antibiotics work and have cleared the system.

Today you feel almost as good, whole-body wise, as you did under the prednisone, though, so that makes you wonder: was it a frakkin’ low-grade dental infection all along? Could this whole ten years have been better if you’d done the dental thing differently?

It went like this:

October 19, she called the Kaiser advice nurse.

October 20, she had an appointment to see her Ob-Gyn.

October 26 (her birthday, unfortunately), she gets the news she’s got endometrial cancer.

Nov 1, she has an appointment with the gynecologic oncologist.

Nov 7, she has surgery.

Later that week, it’s confirmed by the pathologist that they got all the cancer.

Nov 20, she returns to work.

There’s so many bad stories about cancer out there, I figured someone could use a good one.