08 November 2010

I'm not gluten intolerant. I just refuse to put up with gluten's shit!

I have a love-hate relationship with food. It's not about my weight or dieting or any of that. I don't give a shit about calories or fat or carbs or whatever. I've mentioned before that I have Celiac Disease. Mr.FCS (seriously, he needs a better name, but I told him that and he said calling him Mr.FCS was fair turnaround for a feminist. Love that man!) also has Celiac Disease. This means that all three of our kids also do. That's okay, because it makes it easier to keep the house completely gluten-free. What I'm hating is that no place is safe for us. Especially not for Crackle.

Crackle is affected by Celiac Disease far more than the rest of us. Partially, this is because of the nature of his Autism. When he gets "glutened" (i.e. accidentally ingests any gluten) all hell breaks loose. Without grossing you out too much, dear reader, let's just call it "a stomach flu". Plus, he loses receptive language, gets hyper and then some - have you ever seen someone so hyper that they can't sit still long enough to eat a bowl of their favourite ice cream? Because I have. He has bladder accidents, and is just a plain unhappy little boy. For a good two weeks.

So, to put it mildly, I'm the gluten police. I am super careful that he not get any gluten. I mean any. We don't eat food that is produced on the same line as food that contains gluten. We tried that for a while. I developed seizures from malnutrition (damage from celiac causes malabsorption, which in turn, causes malnutrition). I'm ready to kill anyone who comes near my kid with cookies or bread.

And it's EVERYWHERE. There are no safe places. I probably won't be able to send Crackle to school, because nowadays, there's no lunch room. The kids eat in the classroom, and I can't very well tell them they can't allow bread or crackers! Crumbs on the toys will be enough to make him a very sick little boy. I see kids eating at playgrounds, in grocery stores, at church. Yesterday, a little girl was eating cheerios at church and Crackle nabbed one off the floor and ate it before I could stop him. And I was watching him like a hawk because it was communion day. I FREAKED. I mean, I totally lost it. Grabbed him, and bolted. Got him home and got charcoal into him immediately (charcoal absorbs everything, If you get it into someone who's just ingested a small amount of gluten and you do it quickly enough, the gluten never hits the small intestine lining and no reaction occurs). In the process, the Mom of the girl with the cheerios cried, which I feel really bad about, but I didn't have time to explain to her that I wasn't mad at her, and that we were just leaving to get charcoal, blah blah blah.

And it's a social problem. We can't go out to eat. Ever. We can't eat at friends' houses. We can't enjoy a potluck supper at church. None of it. So, I've begun to really really hate food and its ubiquitous nature. And yet, last night, I made the most amazing penne with clam sauce paired with gluten-free vegan bread (Pop's allergic to eggs, and none of us eat any dairy). And it was fabulous. I love good food. But food's place in society, the burden it puts on us, is just so defeating.


fern hill said...

I feel for you, Luna. I've recently developed lactose-something. I don't know if it's intolerance or sensitivity or what, but for me now lactose = misery. It's pretty easy to avoid, but man, I miss cheese and yogurt. And yes, I've tried the goat milk workaround and it doesn't work for me.

Also, with all the stress of the eviction saga, I seem to have developed another eating problem. Probably not anorexia, but significant non-interest in food. I often have to force myself to eat. That's not pleasant.

I've always had intense sympathy for people with food issues. I lived with a bulimic for a while. I mean, if one has a booze problem or drug problem or nicotine addiction (ahem), there's a solution. Quit. Don't do whatever. But, as they say, ya gotta eat.

But eat what? Eat how much?

So, yeah. Sometimes I hate food too.

Luna said...

I find some of the soy yogurts to be a suitable replacement. Cheese is harder. But Daiya makes a decent pizza topping, so that helps.

Do digestive enzymes work for you? And are you sure it's not casein rather than lactose? Lactose doesn't bother me. Casein makes me feel like death warmed over.

Non-interest in food is definitely a problem! I hope you get that worked out. Food is such a pain.

fern hill said...

I'm just going about this by experimenting. I tried lactose-free milk and it's fine. Conclusion: it's the lactose.

I'll try soy yogurt. Heath-food store?

Luna said...

Superstore has soy yogurt. Health food stores have more options. The one I like for healthy is Nancy's. The one I like for the OMG Yum! is So Good (I think - it's a burgundy coloured container).