Confessions of an Imperfect Celiac

I confess: At times over the years, particularly when it came to certain trigger foods, I was a bad celiac. That changed in 2009 when I saw this video. I mention my failings because I’m not the only one out there.

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, but also I respond to the bleached protein differently) 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 tacos. 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.

Originally published at deirdre.net. You can comment here or there.

Hilo Tuesday

First, a bit left over from Monday: I went out to Hilo Bay Cafe, which is a more high-falutin’ place than the name suggests, and had an awesome beef short rib dinner. Now, I’m not normally a beef person (except for hamburgers) and I generally don’t like short ribs at all because they are too tough. This was grass-fed beef and super-tender. I’d been there on my previous trip and they were really great to work with to find food I could eat, plus they specialize in local and organic. Considering that (and the price of food generally on the island), it was quite reasonable.

This morning, I went first to Volcano winery. As the name indicates, it’s up by the entrance to Volcanoes National Park, and it’s literally at the end of the road past the golf course.  I tasted several of their wines, but I’m not a wine drinker. I’d heard their wines were sweet, but they didn’t seem particularly sweet compared to other wines I’ve tried. So I picked one for Thanksgiving. They do have a macadamia nut honey wine that is very delicate — it reminds me a lot of an elderflower cordial that I’ve tried in the past.

After that, I went to Hilo Coffee Mill, which has coffee from several regions around the big island, and even coffee from other Hawaiian islands. They do roasting for a number of growers, and they gave me a little tour. I had to dodge a few chickens (they’ve got about 200, so if you’re ever in Hilo looking for super-fresh eggs, you might want to try there first).

I tried several of their coffees. As they put it, they get so much rainfall that their coffee is milder than on the Kona side, which is far drier — for the simple reason that soil chemicals tend to get washed away. They do supplement the soil, and they’re not an organic farm as a result, but that’s the nature of working with what you’ve got sometimes.

There are coffee plants on the east side of the island that are 100 to 150 years old; it’s a longer-established coffee-growing region than Kona.

What surprised me most, though, was their pineapple coffee. It doesn’t scream “bad coffee hidden by horrific fruit flavoring” — no, it’s good coffee with a delicate lilt of pineapple, and it seemed to me to work very well. So I got some.

At that point it was around noon. I decided to head south past Pahoa (a town I keep going through) and see how far south one could actually drive. About a mile out of Kalapana, the road forks, and I kept going on highway 130, which ended abruptly. There’d been signs earlier that visiting hours for the lava flow were 2 p.m. to 10 p.m. Now that I knew where the entrance was, I had about an hour to kill, so I went and got lunch, then headed back.

At the end of the road, there were scary signs that said, “Restricted Access – Authorized Personnel Only.” So I parked just before that and started walking, but a woman pulled over in a car and said I could drive in anyway. So I did, wondering if I were negating my rental agreement in doing so. I drove about a mile in (over two sections of relatively recent lava flows and regular old road between them) and parked where the security people told me to. The woman said, “Oh, because it’s between 2 and 10, you’re authorized.” Nice to know.

Then I set out to walk to the end of where they let you walk, which is about 4/10 of a mile down the road, crossing several flows that seem at most a few years old, houses (still inhabited) dotting either side of the road. Of course, yards are problematic.

It was brutally hot. The wind was behind me, so I didn’t feel it on my face, and it was full sun, I had SPF 85 on, and a liter of water, my camera bag, and my purse. I felt like a camel. I managed to get up onto the end of the road where the lava flow was and look out; I didn’t see any actual lava activity, but they said it was about six miles from where I stood. Then one of the women who worked there said the flow I was standing on dated from January.

I was thinking as I walked it that it seemed that this spot of land was in fact the very land I was photographing last year from the water’s edge. Some of the details seemed familiar, though of course the perspective was radically different. Another staffer said they’d lost a mile and a half of road in the last year — just eaten up by lava.

So, yes, I was basically standing near the hot melty stuff I photographed last year.

New lava flows are shiny and glassy. I tried to capture that in photos, but didn’t capture it last year and not sure I did this year, either. It turns out that silicon is part of the flow, and it rises to the surface as the lava is cooling (being less dense than some of the other minerals), so it gives the freshest lava a very cool sheen. I’d seen that on the black sand beach last year but hadn’t known the reason. I took some photos; we’ll see how they turn out.

Because silicon isn’t super-hard, though, that layer wears off fairly quickly (over 2-5 years), and then lava takes on the more familiar matte appearance.

On the walk back, I had the breeze in my face, but it was still pretty brutal. At the end, I was hot, I was tired, and I kind of collapsed into the car, turned on the air conditioning, and drank some extra water until I felt unshaky enough to drive.

After that, not much. I missed Namaste’s feeding again, darn it, so I’ll just have to go tomorrow. I’m reserving tomorrow for Hilo town stuff: the zoo, the planetarium, the farmer’s market, and a store I wanted to visit.

Originally published at deirdre.net. You can comment here or there.