May 18, 2012

Got Celiac? Allow me to explain…

*** Warning! There is a better than even chance that the following post contains satirical content. The authors of this site cannot assume any liability for potential public backlash against Oompa Loompas, Mel Brooks movies, and/or the good people of Norway. Thank you for your understanding. ***

Just been diagnosed? Don’t quite understand what Celiac is and what causes it? Have a broad range of really annoying symptoms and don’t know why? Unless you have an obsession with transglutaminase’s and antigliadin’s,
the nuances of Celiac Disease can be a little difficult to digest.
Ahem, pun intended. Boy I crack myself up sometimes.

Let’s take a stab at explaining this really complex topic in true Celiac Bites fashion. That could be a little dangerous, but here goes…

I think the easiest way to describe Celiac is to compare it to the big fight scene in Mel Brooks’ famous movie Blazing Saddles. Someone punches a horse, things get ugly, and next thing you know, everybody is beating the crap out of everybody else. That’s kind of what happens in your small intestine, only there’s usually not a horse involved. So, given the likely absence of the either a horse or evil villain Hedley Lamarr, how does this battle royale within your small intestine happen?

It’s pretty simple really.When you eat Pop-Tarts, you get sick. Even though Pop-Tarts are mostly made of advanced plastic polymers, they do contain trace amounts of proteins commonly found in wheat, barley, and rye grains.

Thor Viking

Thor

And, as everybody knows, wheat, barley, and rye grains are descendants of Thor, the great viking god of thunder. Thor was a raucous warrior, wreaking havoc and destruction wherever he went. After a while, Thor got bored of being fearsome and plundering things, so he settled down with former Beverly Hills 90210 actress Brittany Ashleigh Spelling. Together they had a whole bunch of kids – so many that they gave up on the idea of naming them individually and instead referred to them collectively as the gliadins. So you might say that the gliadins are little offshoots of wheat, barley, and rye grains. Still with me?  Good, because I’m not.

Over the years, gliadins have taken up residence in Pop-Tarts all over the world.  They also tend to congregate in other forms of yummy food like pizza that have ingredients derived from various grains. While very tiny and seemingly harmless, the gliadins are every bit as irritable and cantankerous as their father Thor – especially when they get eaten. That’s where the trouble starts.

When you eat gliadins, they follow a path straight to your guts – home of the villi.The villi are actually a tribe of miniature people begat by the Oompa Loompas. While Oompa Loompas have a reputation of being hard working and industrious, the villi have no such ambition, so they stand around with their hands in the air waiting for any food that may happen to drift by. Most villi are unemployed and prefer to stay that way as long as they can keep collecting free Pop-Tarts.

Oompa Loompas

oompa loompas

So far, so good, as the often cranky gliadins and villi have no real ill will against each other.  As the gliadins float by, they might overhear mundane conversations like this:

“Hey, do you know what’s for breakfast today?” 

“No, but I sure hope we have Brown Sugar and Cinnamon Pop-Tarts again. Mmmm.”

This perfectly civil process turns outright ugly when the auto-antibodies get involved. Antibodies have a chip on their shoulder as they resent having to work so hard fighting things like botulism and the common cold, while their cousins the villi don’t do much of anything. As children, the auto-antibodies were generally abused and picked on by the irritable gliadins. Now that they are all grown up, but still a little on the immature side, the auto-antibodies tend to fly off the handle whenever gliadins pass through their neighborhood. However, old fears are hard to overcome, so the auto-antibodies – more specifically the anti-tissue transglutaminase antibodies (tTGA’s) – can’t muster up the guts to confront the gliadins directly. Instead, they throw showy tantrums and beat up the mellow villi – who are much easier targets to bully. Once the tTGA’s start fighting the hapless villi, all hell breaks loose. Next thing you know, you’ve got antibodies all over the place chasing after villi, gliadins, and stray Pop-Tart crumbs.

On Strike

On Strike

So back to Blazing Saddles. By the time we get to the climactic cafeteria food fight scene, everybody is fighting everybody else and throwing food and furniture for no particular reason. The problem for you is that you own the cafeteria – and the cafeteria gets wrecked in this scene.

As you can imagine, the villi tend to tire of these free for all food fights and eventually go on strike. Beaten down, depressed, and disheartened, they won’t even bother to get their own food, much less do any work for you. You can eat as much as you want, but no goodness is getting through to you. It’s kind of like watching “Lifestyles of the Rich and Famous.” You can spend hours and hours viewing re-runs, but you most likely will not be registering your yacht in Monaco anytime soon. Ok – back to the villi picket line. In a show of union solidarity, everyone else in your body goes on strike. You get sick, tired, lethargic, and weak – kind of like having that 6am Monday morning feeling all the time. And you know how truly awesome that is.

I sincerely hope I didn’t lose you with all the complex medical and biological terminology. This has been a public service of Celiac Bites.

Join us next time where we will address the question…

“So you’re allergic to bread???”

Thor image: MrDonn.org

Celiac Tip: Don’t pay bills before your morning coffee…

Minor problem this morning. I was up late last night and am admittedly a little foggy this morning.  I forgot my “driving” caffeine – you know, the cup of something or other strong that gets you from home to the office with a minimal number of traffic accidents and missed red lights. So I get to the office, grab a fresh cup of coffee, (and here is where “tip” comes into play) start dealing with a couple of bills to mail.

Not being remotely close to properly caffeinated, I naturally finish the first bill, pick up the envelope, and proceed to lick it.

Uh-oh.

Envelopes are one of those risky things – sometime the glue contains gluten and sometimes not. Why people feel compelled to make envelope glue out of poisonous bread of death escapes me. Couldn’t they use Mighty Putty or something?  I am starting to feel like my paranoia is justified after all.

The case of the walking glutonia

scrubbing bubbles

Scrubbing Bubbles

Just because I’m paranoid doesn’t mean that Senseo coffee pods are not out to get me. In fact, I’ve been having recurring nightmares about them. In my dreams, they have mobilized like those “scrubbing bubbles” on T.V. and they are chasing me through an abandoned and really creepy summer camp. I have no idea why, in my dream, I have elected to go to a creepy abandoned summer camp in the middle of the night – by myself. And like the nameless extras in ‘Friday the 13th‘ movies, I back into a dark room (without looking) where they await. But I digress.

Senseo Coffee Pods

Senseo Coffee Pods

Oh yes, Senseo Pods. They are evil, or maybe just demon possessed. Or maybe they just don’t drink enough of their own coffee. I’m 95% sure that they are one of the many causes of ‘Walking Glutonia’ as I like to call it. You may be familiar with it. It’s when you unknowingly ingest microscopic amounts of gluten for days or weeks. The quantity is so seemingly insignificant, kind of like the number of gluten free meals available in a Papa Johns restaurant. However, after ingesting these microscopic doses for several days or more, you suddenly get very, very sick. Like nuclear sick. Like if we could bottle it, the war on terror would be over like instantly.

The worst part of Walking Glutonia is that its just about impossible to figure out what made you sick because you felt fine for the first several days of toxic poisoning. That’s the really insidious thing. The second worst part is actually being sick.

Well, about a week after buying a new Senseo coffee maker, I came down with Walking Glutonia. It never even crossed my mind that the Senseo was to blame. After all, its only water and coffee – none of those fancy flavors for me. I’m a mans man after all and drink my Senseo out of my cute little coffee machine with unflavored breakfast and medium blends. And Walmart sells them, so its not like its some product made by the lowest bidder or anything. So of course I kept drinking the Kool-aid coffee. It was then I discovered that caffeine alone cannot overcome all physical ailments, so I stopped drinking the coffee. That really stunk, but I got better. Except for those daily occasional caffeine headaches.

Refusing to accept reality (I REALLY like coffee) I re-started my morning Senseo binge a couple of weeks later. I mean of all the things one eats and drinks over a day, I figured it had to be something random, certainly not my SENSEO. You’ll never guess what happened next – after about a week of drinking lots and lots of coffee. Satan was unchained once again.

Obviously I was not going to give up my morning coffee, so I started the detective work and called the Senseo people. They directed me to Sara Lee. There we had it – Sara Lee makes all kind of people poison like pound cakes and pies. Obviously they were injecting their Senseo pods with baked goods to build a dependence habit among the coffee drinking population. So I called to expose them.

Helpful Customer Service person: “Hello, my name is Marcie Jong-il, how can I help you today?”

Me (sick and in a really foul mood): “OK, confess. You’re in a call center in the Democratic People’s Republic of Korea, you’re working under direct orders of Kim Jong-il, and you are tirelessly toiling day after miserable day to destroy the free world by means of gradual gluten poisoning.”

Helpful Customer Service person who is obviously an enemy agent working under cover: (silence)

Me: “OK, so you won’t talk. Fine. Can you tell me what’s in the Senseo pods? What is that paper material made of? Are there any gluten ingredients in the paper? Where were you on the night on February 7th?”

Helpful Customer Service person: “Sir, our pods are made with pure paper products, there are no other ingredients, and no gluten.” (at this point I could have sworn I heard her sniggering under her breath)

Me: “Aha! Caught you! What about the GLUE that holds the two halves of the paper together? Answer that!”

Helpful Customer Service person: “Glue?”

There you have it. She was busted and she knew it. Playing dumb didn’t fool me for a minute. I still can’t prove it, as she was obviously accustomed to tough
interrogation techniques and never did talk, but it sure looks to me like those Senseo pods are held together with glue. And I bet its glue made of 100% pure
gluten. It all fits with my conspiracy theory. So there.

Be safe out there, and watch your coffee.

It pays to go with your gut

Sometimes you just have to respect your gut instinct for important decisions. (Pun intended)

fast_company_gut

Gut Guy (Image: Fast Company)

After about six months of dealing with all of the items on the surefire Celiac diagnostic checklist, I decided to pay a visit to the local gastroenterologist. That was fun. I’ll spare the details, but let’s just say that the local Home Depot was probably sold out of PVC pipe, various random plumbing fittings, and air compressors for quite some time.

After the, umm, therapy, I remember hearing a voice through my drug induced haze. “You have Celiac.” the voice said. “Look it up on the Internet. And always choose the red pill. Have a nice day; you can pay at the front desk.”

So I went home. And Google told me not to eat bread. Or donuts. So I didn’t – and complained about it the whole time. And I stayed sick.

After a couple of months, I began to doubt. What could a local guy know about a (then) rare condition? So the Specialist 2002 World Tour began. I didn’t know it, but apparently I might have had everything from genetic immune deficiency disorders to male pattern baldness. Thank God it didn’t turn out to be male pattern baldness – I don’t think my insurance covers Rogaine.

I’m pretty sure I spent more hours in doctors offices than Bernie Madoff is about to spend in prison – all to no avail. The following (mostly true) conversation pretty well sums up the whole experience.

Highly Compensated Specialist (HCS): “I don’t think you have Celiac disease.”

Me: “Are you sure? This is kind of a big deal for me.”

HCS: “No, but I have a number of Celiac patients and I don’t think you have it. Unfortunately I don’t know what you DO have, so I can’t make a definitive diagnosis until I do.”

Me: “You have a wonderful gift of inspiring confidence. How will you go about finding out what I DO have?”

HCS: “We’re going to keep running tests. And I am going to think extra special hard on your case. You might as well go back on a regular diet. I don’t see any harm in that.

Me: (What I wish I actually said, but I wimped out and only thought it) “Except that I might DIE!!!”

HCS: “Well that certainly is a risk we’re taking.”

Me: “We???”

Moral of the story: Trust your gut. Literally. Don’t keep eating the same stuff if you don’t feel better.

It turns out the local guy was right after all. Granted, he didn’t do me any favors with helping me deal with Celiac, but then again, he beat all the Highly Compensated Specialists. I hear he will be on Jeopardy next week.

Photo: Fast Company

Top clues that you may have Celiac disease

Inspector ClouseauHaving been diagnosed myself about six years ago, I feel pretty qualified to offer up this diagnostic checklist:

  1. You fall asleep at your desk more than three times per day and now have bruises on your forehead from hitting the keyboard. The letter “H” is permanently stamped into your right eyebrow.
  2. You eat like there’s no tomorrow yet manage to lose 50 pounds. And you only weighed 85 to start with.
  3. You basically have the flu 7x24x365 – not counting overtime – you have it then too.
  4. Even though you have the flu, you manage to catch every illness currently circulating in Australia, even though you live in Dubuque, Iowa.
  5. You often think you would kick butt on Survivor, mainly because they don’t eat food.
  6. While sitting in clinical waiting rooms, you’ve made up your own Latin names for every gastro-intestinal test procedure known to man. When you ran out of Latin words, you resorted to pig Latin. OlonoscopyCay’s suck.
  7. You’re pretty convinced that you have been abducted by aliens. They’ve removed all digestive organs from your body and filled the void with achy pain generating devices. Like ThighMasters or something. While they were at it, they also dosed you with an extra craving for the forbidden fruit you cannot have – Krispy Kreme Donuts.

That should about cover it. Anyway, that’s how I found out I have Celiac – after a one and a half year study of all medical institution waiting rooms up and down the eastern seaboard. By the way, Johns Hopkins Hospital in Baltimore has the crappiest cafeteria food ever, especially if you’re a Celiac. More on that later, I have a bone to pick with some of my specialists…

My wife and I (God bless her patience with this!) decided to start this Web site to try to help others who are having similar Celiac adventures and running from the Gluten monster. I figure I’ve had a couple thousand conversations with people over the past six years trying to explain this whole Celiac thing with little success. I’ve run across people newly diagnosed with Celiac and have struggled to figure out a better way to help them get started – there’s a really big learning curve to this thing. Those little Glutens are just about everywhere. So here we are.

If you’ve just gotten The Diagnosis, don’t fret! All the tests you just went through hopefully tell you that there are 2,371 horrible things that you DON’T have, including Gout and Rabies. Well, speaking for myself anyway. Once you get the hang of this thing, life is good. Yes, eating at restaurants is a bummer, because they are all out to get you. But besides that, there’s a lot to be positive about.

My wife will be contributing to this blog too, so I have to be honest and admit that I fall into the occasional self pity well, especially when we’re on the road and people start eating nice and oily extra cheese and pepperoni pizza… My life sucks… Stop! Think positive! Sorry, almost fell in for a moment there. All
better now. At least until I drive by another Mellow Mushroom.

I’m looking forward to sharing this journey with you. If you have an irrational need to blog about disgusting intestinal procedures like I do, let me know in the comments – I am building a blog roll and would be happy to post your link on this site.

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