Gluten Free Is Not a Diet - It's a Disease PART 1

PART 1: My Restrictions, And How I Knew Going Gluten Free Was A Necessity

While I've had Celiac for anywhere from 5-10 years, it's slow increase in severity, and difficulty to diagnose left me without a diagnosis until about 4 months ago. Since finding out I had Celiac I've had a lot of different reactions from friends and fellow competitors. Mostly supportive and sympathetic, but believe it or not I've had a handful of people give me some eye-rolling, apathetic reactions that made me do a double take.  It's not like my death is imminent, and it's not like I require sympathy to function. And I'm certainly not expecting people to fall to their knees in tears either.  But at least have the heart to respect the pain I'm in, and the permanent blow to my health, even if you don't respect that my disease isn't 'serious enough'.. sheesh!

And everyone's got SO many questions! I feel like printing up pamphlets and handing them out everywhere I go to save me the time. But the fact that they're even asking questions is a demonstration of their sympathy as well, so I'm glad to take the time.. But I know because of my tendency to be too detailed and nonlinear with my story telling [much like my blogs ;)] sometimes some of it gets lost. So hopefully this blog entry will help to answer some of that.

Around 1/133 (7%) of people, mostly of Northern European decent, carry the Celiac gene. However most of those people will never know it, as being so rare there's not much information out there, and like myself you'll probably be misdiagnosed with many other things before the word Celiac even comes up.  For some of us it's active from birth, but for many people like myself it stays dormant for years.  In my case it started in my late teen's/early 20's, but some carriers have been able to live well into their 50's before they presented with symptoms. And even for those of us who are symptomatic, there's still no hard scientific evidence to explain why it awakens when it does.  One overwhelming commonality for many Celiacs is that a stressful circumstance seems to 'activate' the gene. For some women the act of childbirth or pregnancy may do this, for other people the loss of a job or loved one.  In my case it was dealing with a very dark and violent childhood [which you'd think would have been cause enough to activate it earlier in my life] coupled with all the added stressors that my early 20's brought: career, marriage, and in my case, trying to start and run 2 businesses.

Celiac is qualified as an autoimmune disease, which means the body's immune system attacks it's own healthy tissues.  In this case, the presence of gluten in my digestive system causes it to attack the villi in my small intestine which are responsible for absorbing nutrients, and without which, I may as well be starving myself. In fact, in the last few years as my Celiac really reared it's head and the damage to my stomach so severe, it didn't matter if I ate 1000 calories or 3000 calories.  Without the use of most of my villi, most of what I ate just passed through. And being that my body thought I was starving myself, it would often be in a catabolic state - a bodybuilder's nightmare. Despite my efforts to both gain muscle, and lose bodyfat, my body was fighting just to stay alive, and to do the work it needed for day to day life - forget gaining muscle. The picture below shows you the quick turnaround I had within months of diagnosis and changing to a gluten-free diet:

 So what is gluten - or really, what is it in that I have to avoid? God- what DONT I have to avoid!? My days of casually going into the store and buying anything so long as it's healthy or fits in my diet at the time are over. Even for a few items it can take me as much as an hour. My days of casual vacations or even a day away from home are changed forever and now require planning ahead extensively. I can't even spontaneously go out with my husband on a date without researching the menu first. With the exception of raw, unseasoned meat, raw vegetables, dairy and raw fruit every single thing I buy must be scrutinzed, Googled, picked apart ingredient by ingredient. As little as 1/8 of a tablespoon of wheat or a gluten contaminated item sets off an autoimmune reaction, so something as small as a nibble could make me symptomatic for days or weeks. This is why I can't understand why someone would want to go gluten free without the demand of Celiac Disease..

While I'm starting to adjust, it's no fun for me, and my husband's life is forever changed as well. We have separate carts, separate shelves in the fridge, separate cabinets at home. I can't help but wonder how much more complicated this will get when we start adding to the family. Celiac being genetic, I'll have to wonder if I've passed on the gene to my children.  This is a restriction, a disease.. it's requires constant vigilance and planning. It's incredibly exhausting.  And because of all this restriction, I have been reduced to tears in the grocery store more than a few times.

You'll notice Celiacs refer to it as going gluten free, not wheat free.  It's not that wheat itself that's killing us, it's an amino acid sequence uniquely contained in wheat, barley, and rye. And while some of these may be obvious, as is the case with many newly diagnosed Celiacs, I'm learning to never let my guard down, because wheat (and therefor gluten) is everywhere. As I keep trying to emphasize, going gluten free is in no way simple. Unless you can tell me (and more importantly yourself) that you'd be satisfied eating only plain meats, dairy, raw fruit, unsalted or seasoned nuts and plain vegetables, then you've got a lot of work ahead of you. Here's what you'll be missing out on:

• SALAD DRESSINGS & SAUCES: Modified food startch, a byproduct of wheat, is a thickening agent in >90% of all dressings and sauces. I have to research every ingredient before I even put it in my cart.
• SOY SAUCE: That may as well read 'All Chinese Food' and be followed with the sound of me slapping myself in the face. Second to pizza I have been dying without it. But believe it or not, wheat is the 2nd ingredient in all soy sauces.
• GRAVIES, DIPS & MARINADES: I know you're thinking "uhm, isn't that the same as dressings?" But keep in mind, unless you're eating barebones plain food, somewhere in that recipie some sort of sauce or flavoring comes into play and with it the likelihood of contamination increases
• PIZZA: Unless you can find a gluten free dough - good luck with that.
• BURGERS:  Besides the wheat bun, at most restaurants you run two more risks with the meat patty itself: cross contamination from other items prepared there, as well as the breadcrums many restaurants use as filler.
• ANYTHING MEXICAN: See ya later Taco Bell! Where do I start here? Sauces - Modified food starch. Meats - wheat fillers. Shells - wheat based or cross-contaminated.
• ANYTHING FRIED: While things like fried chicken, wings, and breaded anything may be obvious, because cross-contamination is something I need to be ever aware of, unless they can guarantee me they fry their fries in a separate machine from everything they bread [which having worked in the restaurant industry for years, I can tell you many do not] it's really quite pointless.
• CHEWING GUM, CANDY: Many candies gums use Modified Food Starch as a thickening agent so I even if I won't be swallowing it, I cannot let my guard down here either.
• CEREAL: I'd say a good 25% of cereals out there could easily be made gluten free. They are either rice or corn based, but because they can't guarantee lack of cross-contamination of wheat, it's not safe for Celiacs.  On top of that, let's not forget wheat derived tocopherol acetate [Vitamin E] and malt.
• PACKAGED RICE: Rice naturally is gluten free, but where our friends at Uncle Ben's and other companies really screw us Celiacs is in adding modified food starch, or straight up wheat to all their 'heat and eat' rice produts. So we're stuck with the dry, plain stuff unless we take the time to flavor it ourselves.
• SOUP: Nooooo!! Not my chicken noodle soup! Can you imagine NEVER having soup again? Just last week I had a craving and went wandering down the soup aisle, only to leave muttering obscenities. Even something noodle and barely free, and as simple as tomato soup is contaminated and over-processed with added wheat ingredients.  

-This gluten free thing isn't as simple as you though is it? Here's comes some more...

• DONUTS: while it's the last thing I need, I may never have a donut again in my life without instigating an attack of my immune system.
• MUFFINS, COOKIES, CAKES, PIES, CRACKERS, CHIPS: See "Donuts".. Christmas and birthdays will never be the same.
• ICE CREAM: I do have to say, this one's a 50/50. Some are okay, but anything with cookie dough/pieces, in a cone or containing malt (as many do) is off limits. No more going out for dessert.
• LEAN CUISINE / FROZEN MEALS: Regardless of if they contain bread, noodles or breaded ingredients, unless they take the time go be gluten free, 98% of these items are contaminated either with straight up wheat, or modified food starch... Gone are the days of microwaving a quick meal.
• SPAGHETTI/ PASTA: This is probably for the best anyways. Yes wheat is the main ingredient for any pasta, but it is also one of the most calorie dense carb sources, so i guess this is extra motivation to keep me away from Olive Garden.
• SAUSAGES / HOT DOGS, PROCESSED MEATS: Everyone knows hot dogs are usually spare parts and nastiness, but packaged and processed meats in general are full of hidden wheat byproducts.
• BLUE CHEESE: And I JUST started liking it, too.. that's just not right!
• BEER: In my case this is fine as I have never been a drinker.
• BREAD, BAGELS, etc: A little obvious, but the longer the list, the more restricted you'll see this diet becoming.
• OATS/ GRANOLA/ OATMEAL: This one's an 80/20. Chances are 80% it's a nono. It's not the oats themselves, in fact oats are gluten free and Celiac-safe. BUT very often these items are either mixed with wheat or cross-contaminated deeply, and so unsafe. Some companies do make the effort to keep from cross-contaminating their stock, and will take the time to mark their items 'gluten free' but unless you see this, chances are you're about to undo all your other gluten-free work.

So now you see how restricted my life has become. And for those of you non-Celiacs considering going gluten-free - think back to what you ate today, what you ate yesterday. Can you guarantee me it was gluten free? Can you imagine voluntarily being this restricted, regardless of the circumstances or holiday for the rest of your days? One thing's for sure - I couldn't. I'm the one with Celiac and I find it exhausting. I wrestle with it every day. Yes I am healthier for it, but it will for sure take some time for me to adjust to being the exception to the rule.  And for those of you out there who made it through the list, and are still considering going gluten free, that is what PART 2 will cover: Is a gluten free diet useful or beneficial for a non-Celiac?

Til then - have some pizza and Chinese for me!.. Just don't do it in front of me..