May 20, 2013

Congratulations! You’ve got Celiac! Now what?

I have fallen into the time sucking addiction known as Twitter (find me at twitter.com/celiacbites) and every day I run across someone who has just been diagnosed with Celiac. Most are just as confused and lost as I once was, wondering if they will ever be able to survive without Brown Sugar and Cinnamon Pop-Tarts. Brown Sugar and Cinnamon Pop-Tarts

If you have followed this blog, you may have noticed I have a thing for Brown Sugar and Cinnamon Pop-Tarts. But I’m not bitter about NEVER BEING ABLE TO EAT THEM AGAIN! Sorry for that, I’m OK now. Not bitter, not bitter, not bitter, not bitter.

As I have referenced in earlier posts, learning to eat absolutely gluten free is a long and complex process. It’s not just eliminating bread and flour. Those pesky Viking descendants – the gliadins – have managed to infiltrate just about every food product known to man, including Pop-Tarts. You simply are not going to become an expert at maintaining a gluten free lifestyle for a good six months. Trust me, you will make mistakes and gluten yourself. Plenty of times.

The problem I hope to help you solve with this post is how to manage the gap between your first post-diagnosis hunger pangs and the end of your gluten free kiwi fruitlearning curve, however long that may be. You see, about four hours, maybe six, after your diagnosis, you are going to be HUNGRY.  If you’re like me, you may have been HUNGRY for a long time as a result of celiac induced malnutrition. Learning an effective gluten free diet in a few hours is not a realistic option. And you can’t really go on a water and kiwi diet for the next six months either.

The trap that most newly diagnosed Celiacs fall into is immediately trying to start with an exclusive diet as opposed to an inclusive diet. By exclusive, I mean starting with the universe of available foods and then excluding, or ruling out, things that you can no longer eat. There are two main problems with this approach. First, it’s really depressing for your first thoughts about your new lifestyle to be focused on all the things you can’t eat. Second, you simply are not going to know all the intricacies of which foods and ingredients are in fact gluten free. You will get sick. A lot. And that bites. Trust me, I can feel your pain brother (or sister.)

After trying to start with an exclusive approach to eating, and failing miserably, I had my Duh! moment. happy smiley faceWhy not turn my approach (and frown) upside down and start with a universe of zero “safe” foods and add to the list things that are absolutely gluten free. Over time, as I learned more, I could add to my “safe” list. This approach virtually eliminated my gluten incident frequency while allowing me a series of small “victories” as I learned new things that I could enjoy. It’s all a matter of positive versus a negative perspective. After much deliberation, I have concluded that a positive perspective is, like, way better. Or as my kids would say, the positive outlook is totally beast.

Basic building blocks of an inclusive diet:

Fresh meats, poultry, and seafood. Fresh is the key word here. spamNot can fresh, but raw fresh. Consider anything pre-packaged in plastic or that contains an ingredient list as suspect. This includes deli meats until you verify them.  Beware of anything that could be pre-marinated or pre-seasoned. Beware of anything frozen as well. Don’t eat Spam. Mainly because it’s just, well, Spam.

Rice. It’s a good thing that I love rice, because I eat a ton of it. And I am talking clear plastic bag, cooked at home rice – not the San Francisco stuff that comes in boxes! No trolleys for you! Depending on your current condition, you may or may not be able to put some real butter on it. Whatever your feelings about Fabio,

Fabio I can't believe its not butter

Fabio the Butter Man

stay away from fake butter junk that comes in tubs. If you can’t do dairy yet, try a little pure olive oil with some Kosher salt – it’s not too bad of a substitute. For breakfast, I make home made rice cereal, which is basically regular white rice, butter, and pure maple syrup or pure brown sugar. This allows me to put a lot little extra brown sugar on there to compensate for my LOSS OF BROWN SUGAR AND CINNAMON POP-TARTS! Check the labels on the maple syrup and brown sugar to make sure there are no other ingredients!

Fresh fruits and veggies. Again, stay away from anything processed. Get the stuff you have to put in your own plastic bag in the produce section!egg

Eggs. Fresh eggs are a staple for me.  There are lot’s of ways to prepare them and a little fresh butter or olive oil for cooking is just peachy. Making large batches of hard boiled eggs is a particularly convenient way to deal with snacks, lunches at work, etc.

The suggestions above assume that you personally pulled these things off the store shelves and prepared them. If you eat the same things from a restaurant, you have lost the certainty that the ingredients are pure and absolutely gluten free. You have also opened a big door number three with cross contamination behind it.

As you start to heal, you’ll be able to add other safe items to your list such as cheeses, dairy, some sweets, and more. I will comment on that more in later posts.

So you are off to a rock ‘n roll gluten free diet, but you’re not quite out of the woods yet. Join us next time when we talk about Eating lipstick and other fun ways to poison yourself!

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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