medical — Celiac Bites

Are you a waiting room expert?

March 22, 2011 by Tom Leave a Comment

I just love waiting rooms... At least this one has free Wi-Fi!

So I’m spending the afternoon in a hospital waiting room from yet another possible Celiac complication.

It got me to thinking that I’ve gotten to be pretty good at waiting rooms. I might even be considered an expert.

This one is pretty good in that they have free Wi-Fi so I’m catching up on work emails (and of course writing this post) on my spiffy new iPhone.

I’ll bet a lot of you are waiting room experts as well. So tell me – how do you make the best of hours you spend on medical community furniture?

Filed Under: Life With Celiac Tagged With: doctors, dr kevorkian, medical

It pays to go with your gut

March 17, 2009 by Tom 4 Comments

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

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

Filed Under: Featured, Tips & Advice Tagged With: celiac, gluten, health, medical

Top clues that you may have Celiac disease

March 16, 2009 by Tom 6 Comments

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

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.
You eat like there’s no tomorrow yet manage to lose 50 pounds. And you only weighed 85 to start with.
You basically have the flu 7x24x365 – not counting overtime – you have it then too.
Even though you have the flu, you manage to catch every illness currently circulating in Australia, even though you live in Dubuque, Iowa.
You often think you would kick butt on Survivor, mainly because they don’t eat food.
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.
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.