Healthy Obsessions The Adventures of a Mild Obsessive Compulsive

Category Archives: Idiocy

No Really, I Can’t Eat Gluten

I am going to rant.

I just saw this. It’s a waitress’s rant about people claiming to have gluten allergies when they don’t. And I totally get it. I am sympathetic to her frustration. But she’s wrong.

This bit, this is where she’s wrong:

People with true gluten allergies or Celiac disease don’t go to an Italian restaurant and order the fettuccine alfredo* with gluten free pasta, because those with real allergies can’t take such a risk of cross-contamination.

I wish that were true. But it isn’t. You know why? There is nowhere else.

There are a miniscule few restaurants that are completely gluten free. People with celiac disease do end up eating at places with gluten, because there’s no other option. Where else are we going to go?

Your team at work is going out to lunch. What do you do? Fuss? Demand to go elsewhere? Where? Go and don’t eat? I’ve done that more than a few times. But you end up making everyone around you uncomfortable. Do you refuse to go? Great idea, that’ll do well for team building and career advancement.

People with celiac disease know going out to eat is a crapshoot. We know we’re going to get glutened. Maybe not this time, but next time. We know waiters will roll their eyes at us and refuse to believe it when we say we can’t have gluten. And that is  because of trendoid idiots who pull shit like what she describes in her rant. Saying they’re gluten free, but then asking for rolls. They’ve trained waiters not to take us seriously.

And you know what else sucks? When we get sick, it’s often hours later. So that waiter never knows they poisoned us. Because celiac disease is not an allergy, there is no immediate allergic response. No hives, no rush to the ER.

I’m allergic to peppers. Within minutes, I know if I’ve had them. My throat starts to swell and my neck breaks out in a rash. I get glutened? Nothing happens until my food gets to my intestine. And what happens there may not register enough to let me know my body is suffering. My villi are getting damaged, eaten away because of my autoimmune response to gluten. But you often don’t get symptoms until it’s too late. Until your villi are already worn away enough for you to notice. And you know how long it takes to grow them back? Months.

She’s absolutely right about how easily food gets contaminated. And about the risks of eating out. That’s why I was just in a study looking for a way to mitigate the damage of gluten contamination. Not to allow me (and others like me) to eat gluten again. Not like lactaid, that allows many people to consume foods with lactose. No. A medication to protect us from the constant exposure to gluten we deal with every damned day. It’s a big enough problem that a pharmaceutical company is funding research. Not for an OTC pill. For a prescription medication. One that will require you to get biopsies before it’s prescribed. I hope they succeed. I hate the fear, the dread of going out.

So I get it. I get why she’s so frustrated. Believe me, those trendy idiots frustrate me even more. But please, please, please… don’t just roll your eyes. Don’t assume the person at your table is lying. Give them the benefit of the doubt. They may be a trendoid idiot, or they may be me. Or someone like me.

 

/rant

*Addendum–well, we don’t order the fettucine alfredo because the alfredo sauce has gluten in it…

Things to Do with a Zeo & Why FAA OSA Rules Suck

Another interesting thing to do with a Zeo: make your partner wear it.

Particularly if your partner, like mine, complains about being tired all the time and thinks you’re the cause because you always want to go to bed late.

Turns out, his sleep when I’m next to him is actually better than when I’m not. Also turns out that me waking up regularly throughout the night doesn’t actually register with him. Instead, we have learned that his sleep is very disturbed and he gets a very tiny amount of deep sleep.

Hopefully this is something easily dealt with. Hopefully it’s not his sleep apnea coming back. He had a surgery before I met him that supposedly dealt with it. Certainly made him feel better. It was not the UPPP nor the MMA, but I can’t recall the name of the procedure at the moment. It did involve restructuring his soft palate and removing the uvula, but it also involved other steps I’m not recalling.

He’s reluctant to go back to the sleep doc, though. If he does, and he’s diagnosed with sleep apnea, he loses his piloting license. There are tests that he can undergo to get a medical exception, but those are exceptions. And expensive.  And, while he isn’t a professional pilot, flying is one of the few things he does just for the joy of it. Losing that outlet would be bad. Read more →

Gluten Free is Such a Fad

I’m standing at the checkout at WholePaycheck with my usual basket of gluten free items, and the checker looks at my basket and then smirks and says, “That’s such a fad right now.”

Anyone else ever get this kind of reaction?

On a very personal level, I find it frustrating. Not the fad itself, not precisely. But… Celiac disease is a pain in the butt. Particularly when I was first adapting to the lifestyle, I resented it. No cookies, no kitkats, no pasta, no flour tortillas, no easy shopping anymore. And getting that kind of smirk and snark just made it worse. Like ladling a cup full of condescension sauce over schadenfreude pie. No one likes being the on the receiving end of schadenfreude.

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How Long Should a Gluten Challenge Be?

celiac diseaseRecently, I talked to someone I’d gone to college with who was trying to figure out how to do a gluten challenge in order to test for celiac disease, after having been gluten free for several months (not that I’d know anything about that). Her doctor had told her to eat gluten for a few days, then tested her, and the tests – so surprisingly – came back as negative.

Then, a few days ago, I talked to my 92 year old grandmother, who was diagnosed with celiac disease 42 years ago, who had a doctor tell her pretty much the same thing. Two weeks of eating gluten, she was fine, no problems, he tested her, told her she didn’t have celiac disease, she’d outgrown it. But then…

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Celiac Disease Doesn’t Go Away

There’s no outgrowing it. It’s not a childhood disease. It’s for life. If you have it now, you will have it tomorrow, and next week, and next year, and next century – should you be lucky enough to live so long.

I’ve had several people tell me, now, that they had celiac disease when they were kids, but they outgrew it. And it drives me bonkers. I try to tell them, no, you should get checked. But they don’t want to hear it.

They are absolutely confident, in a way only the blindly faithful can be, that they do not have celiac disease (and I have been guilty of this, too). And meanwhile they have any of a dozen different symptoms that can result from celiac. I feel like I’m watching someone drowning, and I’m reaching out to grab them and drag them back to shore, but they keep telling me, No, no, the water’s warm.

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On the Writing Life: A Tangent

Most of my life, I’ve focused on being a writer. Since I was a teenager, I’ve wanted to write science fiction and fantasy. And then I struck very early success with playwriting, and that became a part of the dream, too.

All I’ve ever wanted was to be a writer. And I’m realizing, that was too narrow a focus.

Please pardon the tangent, I know this isn’t like the rest of my blog. But it’s something I’ve been thinking about a lot lately. Almost obsessively, you could say. And in that way, it kinda fits.

I ran into a writer friend last night and he asked me how it was working as a writer, and I told him it was great. Which it is. And then he asked, well, what about your writing? And it gave me pause.

I told him that I’m not doing much writing outside of work, and he got this incredibly pitying look on his face. He told me that I was out of the game. Which seemed…. flat out ridiculous.

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Called the Acupuncturist

Just made my first ever acupuncture appointment. For tomorrow. It’s ridiculous how freaked out I was about just calling. *sigh* Social anxiety, I haz it.

The needles, I should note, do not freak me out. The talking to someone I don’t know over the phone, that terrifies me. Sometimes. Apparently today.

Seeing a Nutritionist

Stubborness pays off. As does patience, although I have a much shorter supply of that.

After all the run around and nonsense I went through with Blue Shield (BS) over the last several months, I finally have my authorization to see a nutritionist. Mind you, this would have been more useful when I was re-embarking on the gluten free lifestyle back in July. Better late than never.

Long story short-ish: BS only covers nutrition services for diabetics. Anyone else is SOL.

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Fitbit: Tracking My Sleep, and My Sleep Does Not Look Good

I am tired.

Very, very tired.

Not sound sleep.

This was last night. 18 times awakened. Bah. And this isn’t even bad in comparison to the last few weeks. For this same night, my CPAP tells me I was averaging 12 hypopneas an hour. This is not good. But it’s better than the 25 I got a few days ago, which, according to the fitbit, translated into 38 times awakened during that night:

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How Long Did it Take to Get Diagnosed with Celiac?

The honest answer is, I don’t know.

Celiac Disease: A Hidden Epidemic says that on average in the US it takes 9 years from the onset of symptoms to a diagnosis. I’m pretty sure it’s taken at least that long for me. Probably longer.

I have what would be termed silent celiac. I didn’t have the traditional intestinal symptoms of diarrhea, rapid weight loss, obvious malnutrition. If I had, I expect I would have been diagnosed a lot earlier. I had hormonal irregularities. The summer before I left for college, my father started having me tested to see why I had such irregular periods. They’d started when I was around 14 or so, but never regularized. I once skipped an entire year.

I had elevated prolactin levels. But that was all anyone found. I suspect that was the first sign we missed.

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