The Lighter Side of Celiac Disease

I wish I could recall my initial reaction to my diagnosis. I seem to recall a vague sinking feeling setting in, but I don't remember my very first thought upon diagnosis. And although there are many uncool things about this little condition I have (see previous Blaug entry), some things have changed for the better.

Now...as promised: The flip side of going gluten-free.

First of all, yes it may suck that I have to alter my diet, but that's as extensive as my treatment gets. I don't need surgery to fix this. I don't need medications to cure me. I just have to watch what I eat a bit closer than most people do. Not too bad. And while most people manage their diets to lose weight, I just couldn't bring myself to go with the norm...

Right off the bat: I gained weight. You're thinking "Holy shit."
And I'm all like "I know!"
But then you're like, "But you don't look much bigger."
And I'm like...."Shut up, ass. I don't tell you how skinny you look, do I? Why you gotta be like that? Goll!"

It's true, though. I've never been this 'fat' in my life. I'm topping out at 130. And I know that's still not a lot. But it is for me. A record high, in fact. So even if it pisses some of you off to hear me say that, excuse me. Bugger off. I'm excited about it.

See, when I would eat before, I'd eat stuff with gluten in it and when that food (and the gluten) got to my small intestine (where the body absorbs the nutrients from the food) the gluten would proceed to wreck shop. Anything that was in there with the gluten had a rough time getting absorbed, because all of the places to get absorbed were either being knocked around by gluten, or already had been beaten in a previous bout. So, then the food and a majority of the nutrients had to move along down the alimentary tract, unabsorbed. Then they'd exit in an unorderly fashion. That's one reason why I'm so damn skinny. I also come from genetically skinny stock....

My villi get their asses kicked by gluten.

But now when I eat, I send my food into the small intestine to be absorbed without the stuff that was preventing absorption and hurting my intestine: gluten. So now everything I eat gets to be absorbed! Hence the weight-gain. 3000. Beefcake! <-----[gluten-free] It's like I was friends with a jerk, and even though he was a jerk to me, I didn't realize it until things got really abusive (mostly to my poor porcelain pal). When my doctor told me I needed to get out of this unhealthy relationship, I dumped gluten's ass. Now I'm better and happier. I have been feeling healthier and hungrier since going gluten-free (GF). By now, my intestines are theoretically healing up and my friggin' appetite is monstrous, which feels great! I love eating the hell out of some food and making people pull that face. You know the one: eyebrows up, eyes wide open, mouth agape/jaw on floor. It's an awesome feeling, getting that face.

Mr. Crystal had no idea I could eat that much GF food.

And since there's gluten in all the shit that I used to eat on a regular basis, I've had to come up with alternatives. GF stuff comes in a wide variety of stuff that I'd never heard of, so being a Celiac has broadened my horizons. Aside from trying breads and pastas and desserts made from alternative grains (such as rice, tapioca [a.k.a. cassava], cornmeal, flax seed, millet, quinoa [pronounced keen-WA], and countless others), I've also been introduced to Indian food.

Daler Mendhi, Indian Pop Star and consumer of Indian food...or as he calls it... food.

Turns out, Indian food is largely gluten-free in its natural state! I don't have to worry (as much) about cross-contamination in the kitchen or ordering a dish prepared in a special way to cut out the gluten. I really like this stuff and I'm learning more about it every time I try it.

I found out about it when I went to a support group meeting for Celiacs right after I was diagnosed. There was a guy from the local Indian restaurant giving out free samples of GF Indian food. It was good, and he told me they have a daily buffet for lunch. Whitney and I totally went to check it out a week later and loved it. It was tested and approved as an official Friday Fun Lunch (TM) location.

For those of you who don't know what Friday Fun Lunch is, I'll tell you! We have a buffet pizza place in town here. One day someone decided that on a Friday, a few of us would trek across town and lunch at said pizza buffet. It soon became a recurring event that usually took place on a Friday. Then we started going to places other than the pizza buffet on Fridays. Then we officially adopted this new tradition. Some call it Super-Awesome-Get-Outta-the Office-Cuz-I-Can't-Stand-To-Be-Cooped-Up-In-Here-Today-Because-It's-Friday-So-Let's-Go-Have-Some-Fun-At-A-Restaurant-Lunch. I call it Friday Fun Lunch for short.

When my doctor outed me as a Celiac, this changed Friday Fun Lunch forever. No more pizza buffet, to be sure. I was saddened that I would be putting a damper on the outings. I didn't want to keep my buds from getting their pizza-gorge on, but I didn't want to have to stay behind whenever they went there, either...But an amazing thing happened.

My buds from work decided that any future outings that I was planning on attending would be to places that were Josh-friendly. This made (and continues to make) me feel very loved. That's one of the best things that this condition has brought about. The gestures of kindness that friends and family go to in order to accommodate me are touching.

Two friends invited me to a dinner party and cut off a portion of the roast and cooked it separately from everything else (out of the kindness of their hearts, as opposed to because of a special request made by me) so I could have what everyone else was having. They also made a couple extra side items that could have been for everyone, but were mostly just for me. They did this because there were a few things they'd made and that they knew I couldn't have, so they compensated with other items I could have. The entire meal was delectable as well as thoughtful.

One friend made Rice Krispie squares for a party he knew I'd be attending, so he photocopied the ingredient lists from everything that he put into them and brought the photocopies to the party with him. He then presented them to me and asked if there was anything in them that I couldn't have. When I told him there was, he said "Damn it! Are you serious? I made these cuz I thought you'd be able to have 'em." But at that point I was just really happy that he'd put so much thought into the whole process.

One friend borrowed GF vanilla from me so she could make some GF fudge that she was bringing in for everyone to share. She'd listed the ingredients and I told her the only one that sounded sketchy was the vanilla, so she said she'd make the batch with the GF stuff. It made me feel like part of the 'Normal Group' again. I appreciated it a lot and the fudge was fudgin' good!

And my best friend has taken this all in stride. Whitney consoles me when I need it, cooks with me, eats (mostly) GF stuff when I'm around, teases me about it when I can take it, and waits patiently while I'm in the bathroom suffering from the 'Celiac Splats' (TM). The two of us make a heck of a pair with all of our special conditions... she can't have citrus fruits, she's phobic of seafood and fish, and she's allergic to pretty much every fabric but cotton. Meanwhile, I can't eat more than half of what's in your cabinet or stay in your house for longer than two hours if you have a cat... Oh, by the way...we're coming to visit you next week, so start preparing now! =^)

Family members have been extra great about cooking things especially for me, or not cooking some things when I was going to be around. Both of these are big signs of how much I mean to them. It's really quite touching and I thank them for it every time. We're all on a learning curve right now, so some instances are better than others, but at least they're putting for the effort and are willing to go through this with me. Very meaningful.

And it's not just them. I've even started cooking for me! That's right, tough guy. I'm in the kitchen at least three times a week, cooking up some frozen chicken or ground beef or some other simple meals for myself. That's definitely a good thing that's come from my Celiac diagnosis. I found it can actually be an enjoyable experience! And it turns out...I make a mean batch of chicken and rice! Who knew?

So I'm discovering all types of new and crazy things because I'm a Celiac. It's a good source of humor now and then, and it's a big part of who I am now, so I've been building that into my witty banter lately. That also serves the cause of educating others about this bizarre condition. Check out these stats real quick.... boggles the mind.

So in conclusion (yes, finally!) there may be some really sucky stuff about being unable to digest gluten, but it has also brought about some interesting revelations about and changes in my life, as you've just read. The best thing, though, by far about being gluten-free...

I'm no longer afraid of shitting myself when I fart. At the point when my symptoms were at their worst before my diagnosis, I had to be VERY careful when I floated air biscuits. Sharting was a serious concern at times. (You know...when you fart and a little shit comes out. A shart.) But now that I'm gluten-free, I can enjoy farting again. I'm back to my old self and I owe it all to being a full-blown Celiac.

F*ckwheat.

Discovering that I have celiac disease changed my life.

First, the bad and sad:

I can no longer enjoy some of the things that I used to gorge upon. I ate my last box of Whoppers (malted chocolate balls [heh-heh]) in April '06. The cheesy-toast that was a staple in college doesn't quite taste the same anymore with rice bread.

I can't just plop down at a dinner table and chow down with wild abandon like I used to.

There's a significantly huge amount of 'normal' cereals that I dare not consume... all of my old favorites from AlphaBits to Cheerios, Apple Jacks to Corn Pops, Coco Puffs to Rice Chex, Honey Smacks to Fruity Pebbles....even Crispix! The list of dangerous cereals that will literally rip my insides up is as long as the aisle they're sold on.

I can no longer just belly-up to a bar and order a Yuengling or a Rolling Rock.

Fast food is dead to me. It's weird, but I don't really miss it too much. What I do miss, though, is the marginally healthier option that I had recently gotten into: Subs. No more "Eating Fresh" for me. And it may be called a 'Made To Order', but if that were really true, they'd have some buns made from alternative grains back there, quarantined and waiting for some hungry celiac to wander in and punch that button. What I wouldn't give for a steak and cheese sub from Sheetz with Provolone, lettuce, green peppers, and ranch sauce...and some fries. Damn, I miss that shit.

Gone are the days of 'just ordering a pizza' for dinner. Or for a get-together with friends. Nope. I gotta bring my own pie and use their oven if I want to have some 'za with everybody else. It kinda kills the easiness vibe, but that's how it has to go down, unless I want to end up sobbing over in the corner by myself. That would kinda defeat the purpose of getting pizza for a social event, though.

Then there are the acts of kindness that go horribly wrong. The nice little girl from church who gives you some pretzels that she and her grandmother hand-coated with chocolate as a Christmas gift. Or some really sweet-smelling 'gluten-free' cookies from some sweet friend with the sweetest of intentions that end up giving me some sweet diarhhea. How do you tell someone that their gift gave you the runs and damaged your body? Hell... Do you tell them?

Perhaps the most soul-crushing, though are the family traditions that I can no longer participate in. Making cookies with my neice? Nope. Scarfing some of Mom's biscuits? Nah. How about some gumbo, there, bud? I'll pass. Hmm...ok, well have some gateaux sec (my grandmother's special homemade teacake cookies) instead, then. Hey, bud...why are you crying?

[I literally cried when I realized I wouldn't ever be able to have another gateaux sec ever again without dire consequences. It was the first time I ever really, truly, genuinely felt sad about having this condition. It was a surprise attack that devastated me. It was my own personal Pearl Harbor.]

As if that's not enough to mess with my head, guess what the Host in Catholic masses are made of. Yup. You guessed it. Turns out Jesus was made of wheat. I'm sure He'll understand if I skip that line and go straight for the jugular, as it were. That still doesn't change the fact that I feel weird when the person trying to administer the Body of Christ to me doesn't know how to deal with me when I cross my arms and bow. (That means I'm not taking the Host, dude, so you're supposed to say a five-word prayer over me before I move on.) Oh...and it's the same gesture that people who are 'unfit' to receive Holy Communion make. So there's no doubt in my mind that half of my religious community thinks I'm some sort of guilt-ridden freak or chronic mortal sinner of some sort. Just the kind of person you want hanging with your kids at the Youth Room, ain't it? That does wonders for my self-confidence, let me tell ya...

Speaking of feeling self-conscious, going gluten-free has changed the way I talk to servers when I decide to venture into the world of the normies. I have to straddle the line between vague and specific when I tell them I can't have wheat. Usually I use the word 'allergy', which, technically, is inaccurate. But the word 'intolerance' in this context just doesn't strike the same chord. It doesn't send shivers of fear down their spines like it should. I don't correct them if they think I'll die if I get a grain of wheat in my food, because that way they might be more expressive when they're telling the chef what needs to be done to avoid 'killing' this guy at table 12. I have to be thorough in asking about what's in this or how that's made or what other stuff is being fried in that oil....all while trying not to hold up the rest of the table's order in the process. It's an interesting experience, to say the least. I can only imagine what the others at the table are thinking while I'm grilling the server about how my burger will be grilled.

Gluten-free food is expensive. Specifically if it's a 'normal' product made with an alternative grain. For instance: You can get a loaf of white bread for about a buck (sometimes less). A loaf of GF bread that is made with rice flour instead of the usual 'staff of life' costs about $4 - $5. And my loaf is shorter and the pieces are significantly smaller. If you ask me, I'm getting a raw deal, regardless of the purchase I make. (Think about it...)

And although the cost is almost more of a pain in the ass than my reactions to gluten (OH! I get it!), the price tag isn't the hardest thing to deal with...

I've had to learn to plan ahead. This is hard for me to do. Ask my parents about my history with this and I'm sure you'll hear about all of my big projects for school that I put off until the last minute. Ask Whitney about any trip we've ever been on together, and she'll undoubtedly say that she and I can't plan our way out of a paper bag...(actually, she'd come up with something more clever than that, but you get the point.) And while you're at it, ask my brothers how many times they stayed up, waiting for me to finish writing some paper that was due the next day so they could type it for me because I didn't know how to type yet. With all of that in mind, just imagine how rough it is for a slacker like me to lose the leisure of not having to plan a meal ahead of time. Just sitting down to a table and scraping together a sandwich or stopping by a fast food joint on the way home from work isn't a viable option any more.

I can't not plan what my next meal will be. If I don't, it's gonna suck and I'll most likely leave the table still hungry. This is a true challenge for me. I can barely think more than a few hours into the future, let alone into the next day for lunch! I'm slowly getting better at it, though, which is a sign of progress.

Being diagnosed with Celiac Disease has changed my life, no doubt. And from the laundry (grocery?) list of complaints you've just pain-stakingly read through, you'd think that it's all bad. But I promise there's a flip-side to this coin.

I'll write about that side next time....
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What was Sam's (Patrick Swayze's character) last name in Ghost?
Hint: It makes me sick!