Total elimination diet… day 17… Fiala’s progress (a.k.a. The Evil Birthday Cake)
So. We were supposed to add a new food on Monday. I did, sort of. However, the whole thing has been thrown off track because I ate FOUR BITES of my son’s birthday cake on Saturday. While it was gluten-free and dairy-free, it did have rice flour and a couple other things that Fiala is not supposed to consume. Ah, for the “simple” days of GFCF living!!
The cake. It called to me. It said, “You made me… everyone says I’m tasty! C’mon! Have a bite. One bite.” I succumbed to the talking cake. It was going to be one bite. That turned into two. Then three, then four. But, I thought, “Four bites can’t hurt. I hope.” Well, it did. The next day, Sunday, she was very itchy, and by Monday, she was broken out in a head-to-toe rash again.
However, I did go ahead and introduce yams on Monday; I had nearly 2 yams, and Fiala ate about 1/4 of one. Her rash was worse on Tuesday, but I don’t know if that was still fallout from the birthday cake, or if her skin was reacting poorly to yam, as well. Her poop was healthy, which is a REALLY good sign. But, since her skin looks so poorly again, I decided to stop the yam. So, after Monday’s foray into the exciting world of food items not-buckwheat-and-lamb, we’re back into Plainville.
It’s very hard to eat so plainly. I find myself trying to find safe ways to add some color to my diet. Like right now, I’m drinking Crystal Geyser Very Berry flavor sparkling mineral water. No sweeteners, only natural flavors in carbonated water. But, the thoughts nearly consume my mind, “I don’t know about berries. What if she can’t have berries? Is there enough natural flavor in it to cause a reaction???” And, frankly, I don’t know the answer to those questions.
Also, last night, I got some xylitol to use as a sweetener in my morning buckwheat and in Fiala’s all-the-time buckwheat, as she simply WON’T eat it plain. I have tried a day or two of giving her just lamb, which she eats with gusto, but since she doesn’t have enough carbs in her system, I AM the carbs, and she goes back to waking up every 3 hours ’round the clock to nurse, as if she were a couple of months old. Sorry, but I can’t hack that. I need some sleep, and as it is, she still wakes 2x/night, at least. So, that makes sweetening her buckwheat seem like a good option. I’m trying to find something that doesn’t have any “real” sugar of any kind, one that isn’t artificial, one that doesn’t have additives that are on her no-no list, etc. Right now, that’s xylitol. (The stevia packs I have have rice maltodextrin, and she’s allergic to rice.)
I still don’t know if Fiala can handle sugars or not; I’m just trying to be as safe and as simple as possible. But, almost every day, I’m faced with something unavoidable — or nearly unavoidable — that causes me to question if what I’m consuming is hurting her.
BUT AT THE SAME TIME, she seems to be much healthier than she perhaps ever has been, is gaining weight again, and other than the skin-setback, her skin looks fabulous with very little medication. So… I guess I’m on the right path. It still seems, though, that I’m mostly stumbling around in the dark.
I find myself wondering what the next step should be, especially as the doctor has not returned my call, when he TOLD me to call him on Monday, which I did leaving a message (with a person), but I haven’t heard back from him.
Part of me wants to do further testing, like ALCAT or something like that, but could we afford it? I don’t know. Likely not. Would it reveal something that the total elimination diet would not? I don’t know. It would likely reveal the same or very similar information, but in a faster way. Anyways, it looks like if you’re under 3, they have to do a smaller testing series (only 50 foods), and from the list, it doesn’t look like we’d gain that much new information; she’s already avoiding a great many of those foods and/or been tested for them already.
The short version is that I still don’t know what it is we need to find out, so it’s impossible to know the path to get that information. Give me wisdom, Lord.
I did find a totally dairy-free probiotic at the store last night. I opened the capsule and tried mixing it with a bit of water, so as to administer it to Fiala in a dosing syringe. It didn’t mix well, but I figure half the capsule is better than none.
I’m still highly considering the Body Ecology Diet, but because I’m ssslllloooowwwww, I haven’t actually DONE anything about that, other than to check a local store for the book (it wasn’t there). Wait. Scratch that. I just placed the book on hold through the Phoenix Public Library system. They have five copies, all in use; I’m 2nd on the hold list.
By the way, not that I’m really “in” on the world of architecture any more (I was a student, long ago…), but when I passed by the nearest/newest library branch, I thought, “That had to be designed by Will Bruder.” It was. I thought the same thing with the Henkel/US Headquarters. Maybe it’s not that I’m all that architecturally observant; maybe it’s that Bruder’s work is particularly iconic. ANYways.
The good news is that I almost like lamb now. Almost. And, Karin, I found some New Zealand lamb! Ate it for lunch today! I’m still not the connoisseur, so I couldn’t really tell if it was better than the other lamb I’ve had.
This was going to be a short diet update, and some notes about homeschooling successes and not-successes so far this year, plus some notes about me still being sick, and giving my illness to my husband and daughter and visiting father. Ugh. But, that’ll have to wait.
Posted on September 30, 2009, in Allergies, Architecture, Babies, Books I'm Reading, Budget, Celiac Disease, Dairy-free, Digestive Woes, Family, gluten-free, Homeschooling, Medical Stuff, Motherhood, The Kids, Total Elimination Diet. Bookmark the permalink. 8 Comments.