Saturday, June 19, 2010

The Celiac Change

So I hate that all I seem to post are the details of TOT's health issues, but I need to document it: I can't help it if you keep coming back to see what you'll find :)

As expected, she is Celiac positive. At this time, to prevent complications of disease (growth retardation, malnutrition, increasing loss of intestinal function, intolerance to lactose, increase of autoimmune issues, etc) the only strategy at this time is complete elimination of wheat and wheat-derived products from the diet. And actually, not just wheat: there's a family of wheat like grains (distinguished by their outer coats) that include rye, barley and many others.

Its a huge task; wheat-derived products, specifically gluten-related stabilizers, emulsifiers, thickeners are found in places you'd never imagine: lip balm, ice cream, many, many shelf-stable products---salad dressings, ketchup, barbecue sauce, SOY SAUCE for heaven's sake!... but not only is the playing field very broad, the table is also unbalanced because food manufacturers are not required to explicitly state that products contain glutenous byproducts---so some things that are problems don't appear so: laboratory sounding things like maltodextrin (malt anything, actually) and ingredients so benign as "hydrolyzed vegetable protein". And just in case things aren't sufficiently difficult, food manufacturers are not required to label individual elements in flavoring mixes that are approved by the USDA/FDA for use in "upstream" production of a final product and over time, large manufacturers may change providers and there is often a change in content: bottom line---label reading to the nth degree, all of the time. A long established "safe" product may well suddenly become one that causes a flare-up.

I know we're lucky--we have both Whole Foods and Trader Joe's close by---both have extensive gluten-free options and staff who are knowledgeable and HELPFUL. In fact, I was surprised last night to find a fair offering of a few of the best regarded GF foods in our every day grocery store. Still...its more of a challenge for all of the residents here.
I've been feeling badly for Thing 1 and Thing 2---Rob is great about having fun with them but I don't like how divided our family time has become. Lindsay's insulin requirements have been pretty volatile and we're just beginning to understand metabolism of "mixed meals"...e.g., a meal with a lot of fat and a lot of carbohydrates can be terribly unpredictable and require LOTS of vigilance; lots of sleeplessness nights. So we're getting smarter about consciously making decisions that could impact our enthusiasm for activities on the agenda or wish list for the next day...likewise physical activity: we're just not certain enough of her response to have a day filled with activity and then add in a food item we aren't completely certain of.

Its a blessing that it is now summer. We are all happy enough with long days in the pool, a bag of oranges, pretzels (gotta find some gluten free replacements....), crudites and some drinks. We don't need much more than that between now and September. But so long as we're on the subject: I surely wouldn't mind a bit more sleep.

And now, for something entirely different

End of the school year means time to thank our teachers and counselor for all their really heroic efforts in behalf our children and their educations. Its always a bit of a dilemma...the gifts shouldn't be too lavish but they should convey genuine appreciation, it helps if you know the teacher a wee bit but it never seems enough. This year, it was small card holder type four-pocket wallets that I made. Lindsay's teacher is young woman who loves pink, her iPhone, crafting and we had lovely pinky wallets (floral and stripes; pretty) with iTunes and Starbucks gift cards. I also cut credit card sized pieces of card stock to make small thank you notes that the girls personalized. Pretty pleased, I am.

Happy Father's Day tomorrow to all the Dads.... that you know of ;-). Love to all!


Special K said...

Sorry to hear about the young lady's continuing health issues... I know a gal has a gluten allergy - eats a lot of stirfrys. You?

KHM said...

I have no effing clue what we're doing :)

We have found a good gluten free bread, awesome gf pretzels and a baking mix made of assorted non-wheat flours that should suffice for pancakes, the occasional cookie. But mostly, I think we're going to look to foods from non-wheat diet cultures; stir-fries sound like part of that plan. Did you know a lot of soy sauces have gluten? Crazy.