When the Body Lies

I have been glutened. For people who don’t have celiac disease (most of you), that means that a protein most people can tolerate has attacked my small intestine & made it impossible for me to digest a variety of things (for a little bit).

I won’t get into the physical details because they are gross. You know what stomach flu is like.

Mentally, it’s much worse, I always feel. You stop absorbing fat-soluble vitamins for a few days while it all heals, so your body is achey and your brain is…

I burst into tears driving into work yesterday because INXS was on the radio. I…don’t usually do that.

I burst into tears thinking about something relatively innocuous from my past that I am normally able to analyze rationally. And that I don’t normally think about.

And I had a really fantastic day yesterday. I had zero reason to be sad.

This is why we have to remember that what our brains do is frequently tied to what our body is doing. Yes, our brain controls our bodies, but our bodies control our brains right back.

When you are sick, when your organs are damaged, your brain is handling a gazillion other things. It’s like the mother with four kids, & all of them are screaming. Eventually, she’s going to snap & scream at them. And they’ll burst into tears.

I mean it was so bad I had a moment (or longer) where I thought God hated me. I felt trapped, rather than in his hands. Or even worse, abandoned. There was absolutely no good reason for this except that my brain did not actually work at that moment.

I never want to hear another gluten joke again. You people don’t even know.

A Day In The…

I promised I would write every day. I failed. Here is a vague effort to remedy that, but these are just going to be small, almost Tweet-like bullet points.

• My boyfriend went to Coscto in Van Nuys today. While he was getting protein bars, Paul Stanley of Kiss walked up. My boyfriend told him “I’m getting protein bars for my girlfriend,” which was a lie. Paul Stanley said “Tell her I said hi.”
• We went to Olive Garden for dinner. There was a normal piece of pasta in my gluten free rotini. I will be sick tomorrow.
• While at Olive Garden, the BF randomly said “We should start singing that song ‘Connected‘ so that we’ll hear it in the car, like last time.”
• I confessed to the BF that I played Magic the Gathering a really long time ago. I showed him my deck, which I still have. It’s from 1994. I’m shocked people still play.
• The cat has been brushed at least 6 times.
• Knowing that you have a gluten free cranberry orange scone & mascarpone waiting for you in the morning makes it much easier to get up.

I’m sorry this was poetry free. Wait, here’s a haiku:

The cat is so spoiled.

And why does my man love tapioca

Pudding?

“Ha Ha, Your Potentially Fatal Disease is HILAIR!”…

…is what I hear when y’all make gluten jokes. That’s because I have celiac disease, & am not on some trendy, totally misguided diet.

“Celiacs can’t touch this!”



I talk about fibromyalgia a lot. I published a book of my experiences with it & I have an entire blog devoted to it. I don’t talk about celiac because, I realized a few days ago, it’s the one thing I’m actually kind of sensitive about. And then I realized it’s because it’s the one disease (or rather its only treatment) that the first world makes fun of all the time. Constantly. Without end.

I empathize with why you do. The type of people that go on & on about gluten are exactly the type of people everyone hates. They end to be upper class white people who also rabbit on about eating raw, locally sourced, fair trade, cruelty free everything & wax rhapsodic about colonics, vaginal steaming, & Pilates. They say “Namaste” as frequently as the rest of us say “What up?” 

They appropriate cultural staples & turn them into fads. They are history’s greatest monsters. I get that. I’m with you on that.

I confess we celiacs also secretly love these people.

Why? Thanks to their deep pockets & frivolous spending habits & mouthiness, they have greatly expanded the number of options people with celiac disease have for getting super fat. It’s awesome. Because these munificent harridans wave their credit cards at every damn thing that seems “clean”, the market has responded by making actually edible gluten free baked goods. Donuts, bread that doesn’t have the consistency of dry wall, cakes, brownies, cookies, tarts, pasta, cereal, pie crusts…it all exists! A copious bounty of ready-made, ridiculously expensive treats are now available in nearly every supermarket. It’s a golden age for our potentially fatal disease.

Wait, what?

Yes. Because the only treatment for celiac disease is avoiding gluten completely. If we don’t avoid gluten completely, let me explain what happens. It’s very different from what people who are just cutting out gluten experience.

After ingesting gluten (a protein present in all wheat products, including soy sauce & damn near everything else in the West), our immune system trips out & attacks it. It does this in the small intestine, which makes the villi (tiny projections on the intestine wall which do all the work) freak out & flatten. Then we stop digesting fat.

“That sounds great!” you say, like some kind of idiot who doesn’t understand human biology. No, it is not great. Aside from bloating, gas, & yellowy diarrhea coming out of you at rates that would make laxative abusers envious, fat is essential, essential, for brain function. It also makes you feel full, so if you meet a fat person with celiac, they are feeding their constant hunger with sugar, which the body stores as fat faster than fat becomes fat, thanks to stupid evolution.

Additionally, the part of the intestine that is damaged by celiac disease also generates most of your serotonin. Yes, much of your neurochemicals are made in your gut. So after the sexy, sexy gastric symptoms comes depression (like, crippling depression), cognitive issues, & lovely additional neurological symptoms like falling, aching, loss of grip strength, fasciculations, etc.

Many people with undiagnosed celiac are worked up for MS or ALS first. This is why. There is mounting evidence that celiac causes permanent brain damage. Those of you who know me are probably not surprised.

Side note: I was also deemed infertile because I did not ovulate during my peak childbearing years. This is not uncommon in undiagnosed celiac because the immune system in your abdomen is so freaked out, it panics all over your ovaries, too.  You save money on tampons, but no baby. Well, crap.

Untreated celiac kills because the cells in the small intestine, after years of abuse, just give up being normal cells and frequently turn into bowel cancer. Those are everyone’s favourite two words: Bowel Cancer. That’s of course if you survive the suicidal depression & the falling & whatnot.

So when you crack your super funny gluten joke on Twitter or Facebook or your high profile late night TV show, what you are saying to people with celiac, unintentionally, is “You’re hilarious for trying to not die of bowel cancer!” I am not asking you to not crack your jokes. You do whatever you like. Just be aware there’s a population of us out there who cannot do stuff you take for granted. Here are some of those things:

1. Attend a food-oriented event without concern.

I hate any event associated with food, because I hate being that stupid girl asking about gluten. If you want me to come to something in a totally carefree spirit of learning/socializing/worship, don’t provide food. Snacks, “dinner included”, & “pot luck” all create 100 scenarios where I am saying “No thank you” repeatedly to people who see that I am fat & just assume I want food. No, I don’t want food; those 36 years where I was turning sugar into fat made it so I don’t need food. I don’t want to talk about food or explain a disease. How are you? Put the cookies away & just tell me about you. No for fuck’s sake I don’t want a sandwich.

2. Order at a restaurant.

I have to be that stupid girl who asks about gluten. The wait staff assume that I am that stupid girl on a stupid diet who will eat her carefully prepared gluten free quinoa goat cheese salad, then take a sip of her friend’s beer & a bite of her friend’s cake. No. So I have to start each order (at a place without a designated gluten free menu) with “I’m so sorry, but I have celiac disease.” Sometimes, I have to explain celiac disease. “Which of your menu items can be made gluten free?” Then the poor server has to figure that out, which usually means asking a chef, whom I envision swearing loudly & throwing a handful of wheat flour into the air.

This is 800 times worse when I order somewhere that the server has English as a second or third language, if at all. I love food from other counties as it is delicious & frequently gluten free, but of course all the best authentic “ethnic” food comes from businesses that employ almost no one from America. This situation is my own damn fault. And they are frequently stuck using American ingredients, which may have wheat/gluten as a binding agent. I have come up with creative ways to ask about this, but I feel like an asshole every time.

Then the people at the table launch into their good humoured “You’re so difficult!” ribbing, & even though I know they’re kidding because I am usually the one accommodating others, I want to crawl under the table & stab all of their ankles with my fork.

3. Sit at a common area without worrying about breaking out.

This is going to sound stupid to y’all, but if I brush crumbs off a desk, table, or bench with the side of my hand, I break out in nasty little itchy bumps right where my hand touched the crumbs. A lot of us do. This rash can last weeks, & is the opposite of sexy unless you like your hand jobs with extra texture.

4. Use soap/moisturizer/shampoo/make up/sun block without reading the ingredients.

Do you know all the chemical names for wheat? I don’t yet, as there are many. Skin absorbs 70% of what’s on it. If I slather or lather on wheat, it’s just as bad as if I accidentally ate a piece of cake, yet 600 times less satisfying. Wheat proteins apparently make everything soft & youthful, so y’all put it in a lot of shit. It’s “all natural”.

5. Digest other foods.

Yup, when your intestine is compromised, dairy, other grains, sugar, & pretty much everything is harder to digest & absorb. We are frequently deficient in something even when we’re doing everything right. We also get a lot less fiber than the rest of you, which is why you see us inhale vegetables.

As diseases go, celiac ain’t the worst because the cure is free: don’t eat gluten. You can also reverse a lot of the turmoil you suffered most of your life. There’s a lot you can’t, though, & you must be in a state of constant vigilance. You also have to put up with people’s little cracks.

Nobody else will understand how irritating this is until another disease’s treatment becomes a trendy weight loss method. Gangrene sufferers, you’re next. Wait till the Goopers of the world figure out you can lose ten pounds in a day by cutting off your lower leg!



The Small Intestine is Faithless

A little while ago I shared with you my first communion experience at the wonderful & welcoming Saint Thomas the Apostle of Hollywood. To summarize this experience, I took Communion without thinking & didn’t become immediately ill.

I continued to take Communion. I never became immediately ill, ever. I felt like I was the embodiment of perfect faith, or perhaps incredibly lucky.

Then my fibromyalgia seemed to be acting up.

I blamed June gloom, which is a phenomenon in Los Angeles whereby every Beach Boys song becomes a flaming harmonized lie. We start the day, even in the valley, with what in the beach towns is typically a “marine layer”. This sounds like dolphin porn but is actually some meteorological thingy you can Google or whatever. Anyhow, it blankets the whole of SoCal except barometric pressure changes come with it, which every fibromyalgic & migraineur has learned to associate with suicidal ideation inducing pain levels. So I figured it was that.

Then the June gloom stopped, but I was getting worse. I cancelled event after event, plan after plan. People I wanted to see & things I really wanted to do pale in comparison to wishing you were dead because you’re 39 & nothing works properly. You’re having painful spasms everywhere. Your brain stops thinking clearly. Your digestion becomes a kaleidoscope of conflicting complications, all of which are potentially embarrassing. I was conserving all my energy for church & Communion.

Well…the wafers are not gluten free.

I have never been glutened & not had the near immediate urge to teleport to the nearest loo. As this was not happening after Communion, I figured I was fine. My faith in Christ was all like “What up, stupid wheat protein? How you like me now?”

My small intestine was all like “Oh hell no, ho, I ain’t playin’.” Because my small intestine is Wayne Brady & it had to smack a ho the only way it knew how–neuromuscular failure.

I had a very nice chat with our rector on Sunday. He seemed alarmed (in that very gentle Welsh way) that I was essentially tormenting myself & instructed me to chat with the folks in the sacristy before mass & gluten free host will be provided me. “You needn’t worry; it’s already consecrated,” he assured me with a hug.

So.

He didn’t judge my faith nor my intestines, who are jerks. He doesn’t judge the faith of others with celiac or an allergy or autism, either, as the gluten free host is all ready to go. He just wants me to be able to enjoy the sacrament & not make my fibro worse & not get cancer & die. That’s pretty Christ-like.

So anyhow have I said enough times already how much I love St Thomas??

The Body of Christ: Is It In You?

I have avoided Communion every time I’ve had an opportunity to receive it, because I have celiac disease. As anyone with that affliction or even a mild gluten intolerance knows, the slightest bit of wheat will send us running to a bathroom within 20 minutes, & to pain meds & antidepressants within days. It is hard for even those of tremendous faith to get past the fear of crapping themselves dead in church.

A while ago a dear friend of mine (who also happens to be a staunch atheist) questioned the trend in Italy to go to gluten free wafers. “If the wafer becomes the Body of Christ as it passes the lips, why worry about gluten?” I explained the above, that how once you’ve felt gluten tearing up your small intestine & thrusting every last particle of food in your body rapidly toward your descending colon, faith wavers. What if there’s a crumb on your lips that didn’t transform? What if your faith was recently tested and wrung & you kneel at the railing utterly convinced that your bowels will let loose in front of the whole congregation? “What if what if what if” is the enemy of faith &, of course, the mantra of the celiac sufferer.

But I took Communion on Holy Saturday, kinda by accident.

I went up to the railing of my new church with the intent of receiving just a blessing. That’s what I normally do. Christened in the Church of England, I am welcome to take Anglican Communion but, you know, celiac.

When the bishop approached, she had the wafer, & I don’t know what happened. This was the first church I’d been to since I was a small child where I felt the presence of Christ. I opened my mouth, & she gave me the bread. My sister, next to me, shot me a concerned look.

As I shuffled back to my pew, I swallowed & simply said, in my mind, “This is the body of Christ, washed down by the blood of Christ. I’m fine.”

Twenty minutes later, I was still fine.

Two hours later, I was still fine.

The next day, at Easter service, I wept during a moment of silence after the liturgy. Christ’s sacrifice was so great; who am I to begrudge this sacrament? I just about ran up to the rail on Easter, so eager to receive Communion. I had an hour drive out to see my Mum after, & I didn’t care. I wanted that wafer & that wine.

And I never got sick.

On the drive I pondered this. Is my faith in Christ so strong now that gluten has no effect on me? “Don’t be stupid,” said my sceptical mind. “They’re obviously gluten free wafers.” But then I had the thought “Does it matter? I accepted the wafer without question, & either way my faith was rewarded.” And it will continue to be. There is no one on the planet more fired up about Communion than this girl.

As the radio blasted “It’s got to be real” I laughed, car danced to ridiculous disco, & told God I loved Him & my new church. Then “Hot Blooded” came on & I was forced to remember that embarrassing Bones episode.