Thursday, July 26, 2007

Celiac Update

Hi all! Just wanted to update on the Celiac (CD) and how we've been managing. I've been gluten-free (GF) for 10 days now! It's really not as hard as I thought it would be. We've (I've) been cooking a lot more, which is probably a good thing. Healthier and cheaper. I did get a chance to go out to eat at PF Chang's yesterday because they have a GF menu. It was very nice! And so were the 2 martinis I had ;)

The labels and ingredients are still kind of tricky, but once we figure out which brands are okay, it will be much easier. Unfortunately, I've come across a lot of items that are "manufactured in the same facility as wheat products" which seems like a CYA (cover your *butt*) statement to me. My dietician said I should avoid those products, but we did use some frozen veggies that said that and I was fine.

My appointment with my GI doc was Monday. He had my iron, vitamins B & D, and liver enzymes tested. The iron and vitamin B are low and the liver enzymes are still elevated but have come down (still waiting on the vitamin D results). I also have to have a bone density screening done (August 8th) and am taking Viactiv calcium chews. I can't believe I need all these supplements (iron, vitamins, and calcium). And would you believe my GI doc had the nerve to tell me I'm "undernourished" and need to gain weight? Oy. Believe me, I'm NOT undernourished...but secretly, I took it as a compliment after just having had a baby less than 3 months ago ;) Sick, I know.

Anyway, so that's that. I'm feeling's NOT the end of the world like I once thought it was. We leave for vacation on Saturday morning (BEFORE the crack of dawn) and I'm hoping to manage okay while we're there. I'm sure there will be lots of cross-contamination glutening, but hopefully it won't make me *too* sick.

Thanks for all the kind words, well wishes, emails, phone calls, etc. You all are fantastic!

We'll update with pictures and stories when we get back! Take care!

Thursday, July 19, 2007

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 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 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 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!

Friday, July 13, 2007

What's new?

Where do I begin?

Luca is a dream! We really have been blessed with good babies. P&E were no trouble (I remember we actually had to *wake them up* to feed them when they were newborns) and Luca is doing pretty well regulating himself (he's still on *his own* schedule). Now, the question it genetics, is it environment, or is it luck? Maybe all 3? Anyway, we can only pray that #4 fits into our family as easily as Luca has. Ha ha, NO, I'm not pregnant! #4 is slated for 2009, at the earliest!

P&E have adapted well to Luca's arrival. The first few days back at home from the hospital were a little rough, but all is well for the most part. They are both working on canines and molars right now, as well as bottom lateral incisors for Perry. Like I said in a previous blog entry, take out stock in whatever company produces Tylenol and Motrin! So the teething makes for some crabby tantrum moments, but those are un-related to Luca and his arrival.

Ella has become our "little Mommy". She loves to help...patting his back to burp him, getting his bottle and burprag, hugging and kissing on him, anything to be near him. Perry is a little more standoff-ish, but you can tell she loves him too. We can see Luca taking mental notes of all the times he gets roughed up by his sisters though. At 75th percentile in height and weight, he'll be bigger than them in no time!

I have to share a story from our first outing with all 3 kids. We went to the furniture store to look for a new kitchen table (had to upgrade from 4 to 6 chairs) and I was pushing Luca in his stroller and Dave had the girls in the double stroller. The saleslady stopped us and asked "Are these all *your* kids?". Uh, no, we found these 2 out in the parking lot. Very funny! I'm sure we have lots more strange comments in our future. ;)

We had the verbal explosion here in the past few weeks. The girls are both picking up on so many words and trying to repeat them. It's very exciting. I feel like they can communicate with us fairly well now. "Bah" is universal for ball, bottle, and that one can be a little confusing, but with context clues, it's pretty easy to figure out. "Cah" is car. "Guh" is cup. "Bay bay" is baby. "Mah" is more. "Ishy" is fishy (for our pet fish and for goldfish crackers). "Ishy" can sometimes be confused for "sissy" though. It all kind of sounds the same. "Sue" is shoe. I'm sure I'm forgetting some...but you get the gist.

They have also mastered many body parts and know where their hair, ears, eyes, nose, mouth, belly buttons (bee bo), and toes are. And they often try to repeat those words as well..."ah" for eye and ear, "ha" for hair. They are doing very well on the steps now...going up and down by themselves. They love to jump, dance, run, climb on the couches, play with their toys, and of course get into trouble. :)

We've been going up to the pool a lot lately so they have been playing with some of the neighborhood kids in the kiddie pool. They also have cute little swimsuit tanlines (despite the slathering of SPF 50). Luca is too young for sunscreen (6 months) but he keeps cool in his stroller under an umbrella...with the occasional toe dip in the pool.

Unfortunately, right after I stopped nursing and pumping for Luca, I got sick. It's been about 5 weeks now, but a blood test has revealed that it may be Celiac Disease, an allergy or intolerance of gluten/wheat. I'm having a colonoscopy (my 2nd...yeah, I'm not even 30 and I'll have had 2 colonoscopies) on Monday, along with an endoscopy. So with the biopsy results, we'll know for sure what it is. I've had low iron for awhile now (with both pregnancies) and have finally been labeled anemic...a common symptom of CD.

And also, we'll be heading on our first vacation with all 3 kiddos on the 28th of this month. We're going to The Atlantis in the Bahamas with my mom's family. We're looking forward to it and hope the girls enjoy themselves (with 19 pools to choose from, how could they not?).

Hope everyone is having a good summer!