Gluten-Free is the way to be (a post about me)

After the colonoscopy/endoscopy on Monday, the GI was fairly certain it was Celiac Disease (CD) and the biopsies came in on Wednesday to confirm it.

A little background on CD, if you're not familiar...

Celiac disease is an autoimmune disorder of the small bowel caused by a reaction to gliadin, a gluten protein found in wheat, barley, rye, and oats. Upon exposure to gluten, the enzyme TTG modifies the protein, and the immune system cross-reacts with the bowel tissue, causing an inflammatory reaction. This leads to flattening of the lining of the small intestine, which interferes with the absorption of nutrients (specifically iron, in my case, causing the anemia). The only effective treatment is a lifelong gluten-free diet. Long-term effects of untreated CD include lymphoma and adenocarcinoma (cancers that can develop in the intestine), osteoporosis, miscarriage and congenital malformation of the baby, and short stature.

The GI doc told us on Monday to go ahead and start the gluten-free (GF) diet. Of course I spent Monday and most of Tuesday mourning the loss of my junkfood diet. And an FYI to the population...saying "it could be worse" to someone is NOT exactly the empathy they're looking for. I know it could be worse, trust me...however, it's still a HUGE deal to me and a huge lifestyle change...so please don't minimize anyone's situation with those dreaded words. But I will admit that fortunately there are lots of resources for CD and many stores have added GF items to their shelves. So I am lucky in that respect.

I took my first trip ever to Trader Joe's on Tuesday night but was very overwhelmed at the experience. Much to my surprise, they did not have all the GF items grouped together in one section but were spread throughout the store (like a normal grocery store). The cashier gave me a nice 5 page list of their GF foods, but it only made it harder. After about an hour (and the store is NOT that big), I left with 2 bags and $30 worth of groceries. Nothing too impressive, except a very good cashew cookie Lara Bar.

I then visited Dierberg's on Wednesday and they are kind enough to put the GF specialty food items together in one location. VERY nice! I found GF cereals, pasta noodles, bread, tortillas, bagels, pizza, cereal bars, and lots of flours and mixes.

Right now, we're going through tons of lists from the internet to figure out what "mainstream" foods I can still eat (i.e. Tostitos chips, Daisy sour cream, cheese, etc). We have to switch brands on some things...like Kikkoman to LaChoy soy sauce. Becoming a label reader is a new experience too. Some companies are really nice and put specific allergies (soy, milk, wheat, nuts) right on there in bold print, while others make it a bit more difficult. And unfortunately there's more than just wheat, barley, rye, and oats to look for. Malt is a no-no as well, b/c it is usually made with barley. G'bye Bartles & James wine coolers. And the most frustrating ingredient of all is "modifed food starch". My dietician told me that the FDA requires companies to specifically state if it is wheat, but I guess they don't really have to. So in MOST cases, modified food starch = corn...but not always. When in doubt, don't eat it.

Then there's the cross-contamination issue. My dietician told me to get a new toaster (one for my GF stuff only), get rid of wooden spoons, wash hands after feeding the girls something with gluten, etc. And of course...restaurants. Sure, I can order a steak, steamed veggies, and a baked potato...but whose to say my steak didn't just get grilled where a breaded chicken once was? Unfortunately, it's virtually impossible to be 100% GF, but luckily it doesn't seem like I'm *that* sensitive to it. And there are a couple restaurants that offer GF menus...Outback and PF Changs. Guess we'll be eating there a lot!

And I know some of you (who know me well enough) are wondering if I can still eat my beloved Taco Bell. While a taco is essentially GF (corn shell, meat, lettuce, cheese), Taco Bell's ingredient statement says that oats are used in the shells and meat. However, the tostada shells are listed as GF...as well as the rice and pintos n cheese. The chips are GF, but are fried in the same oil as other non-GF foods. And of course the cross-contamination issues. We'll be having taco/Mexican night at home a lot more now ;)

So, it's a HUGE lifestyle change. I'm out of my sulking phase and into the "game" phase where I'm enjoying the challenge of figuring out what mainstream foods are still okay, how to substitute for those that are not, and tasting the GF specialty foods. And of course this has opened up a whole new group of message boards for me (I already belong to 2 mommy buddy groups, 1 toddler board, and 1 multiples board). Can we say "internet junkie"? I'm sure the excitement of this phase will wear off soon though ;)

The next step is getting the kids tested since this is a genetic disease. We have an appointment with a pediatric GI on August 15th. Unfortunately if the blood test is positive, they would have to undergo an endoscopy for the official diagnosis and we're not sure we want to do that, but we'll cross that bridge IF we come to it. If you have room in your prayers, add one for Perry, Ella, and Luca to be negative on the CD test.

I've been feeling better. Actually I was on Bentyl (for IBS) for about 2 weeks before the colonoscopy, so I hadn't been sick in awhile...but now with the GF diet, hopefully my small intestine is on its way to being repaired. They say it can be fully healed in 3-6 months in younger people (does 29 still count as "younger"?), but the GF diet is for life. I have a follow up appointment with my GI doc on Monday and I think he'll want to set up some tests to make sure I'm healing and the iron is being absorbed okay.

We'll update if anything changes. Thanks for your thoughts, prayers, and well wishes!