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.

Food.

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.

~sigh~

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.

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About Karen Joy

I'm a homeschooling mother of six -- 3 boys ages 17, 15 and 12 years old, and three girls: 8 and 5 years old, and our newest, born in June 2013. I like birding, reading, writing, organic gardening, singing, playing guitar, hiking, the outdoors, and books. I am a natural childbirth advocate and fledgling birthing class instructor. I'm a CSA coordinator for a local organic farm, Crooked Sky Farms. I have a dear hubby who designs homes for a local home builder and who is the worship pastor of our church. I live in the desert, which I used to hate, but now appreciate.

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.

  1. Hey, Karen!

    I bumped into an old friend recently (her name’s Karen, too – how funny!) and she was telling me about how her son was diagnosed with a fructose intolerance. She insisted it was intolerance rather than allergy, but he had pretty severe reactions (vomiting, belly pain, bowel issues)….took 1.5 yrs to diagnose…ANYHOW, the only sweetener that she can use for him is aspartame. Yuck, I know, but the doctor told her that every other sweetener would cause the same reaction as if she gave him sugar.

    Priscilla was officially diagnosed with a milk allergy, though she has been tolerating raw cow’s milk since then…McKenna’s skin has cleared up since we’ve made the switch, so I’m betting that she’s sensitive to milk in some way as well.

    I hope you can successfully reintroduce some variety into your diet!

  2. I have never had buckwheat. I might just have to try it now to see what you guys are living on.

    I am very thankful that she is feeling and looking better. i can only imagine how hard it must be to not know what to do next. I will be praying for you.

  3. when my kiddo was little, the doc ran one on her… but then told me any results but a yes didn’t mean anything on anything she hadn’t eaten a few times anyway. his example was that it would give “no reaction” on papaya when she’s never had it, but then, when she eats it the first time or two, her body decides its not gonna deal with it, and a test run after that would then get an entirely different answer. so if you go that route, you might try making sure she’s had all of the foods on the list a bit before they run it… since she’s so little and won’t have had as much exposure in general just yet.

    does the xylitol make her gassy at all? we usually don’t use it for anything but tea and other really small in proportion amounts.. after a couple of instances of overdoing it and getting that lovely sugar alcohol effect like malitol in the diet foods… lol

  4. oh I feel your pain. I’m wracked with worry and guilt over anything new I try in my diet. Im constantly fretting what if what I’m eatin will hurt hm for the next several days? (b/c lucky me it effects him for DAYS not just hours… ugh)

    I had t take benedryl over the weekend – oh my he still isn’t right. I didn’t even take much! he’s fussier and waking all night. and wont nap. this morning he finally crashed and took a good nap, but I pray it’s out of his system soon. what makes some kids so incredibly sensitive and other not? I don’t get it… I just don’t. and know everyone thinks I’m nuts for being so strict, but seriously, otherwise Ven would be in pain and fuss and cry ALL day long and never ever nap. to me there isn’t a choice. can’t stand the idea of his babyhood being an unhappy experience. maybe that sounds silly but I can’t imagine someone not caring enough about me to be a little put out for a little while to help me to feel better. he’s only a baby once! (I just pray our next possible kids doesn’t have this too… *sigh*)

  5. I’m happy to hear Fiala is doing better. There is a company on the web called rawlife.com that sells organic, unprocessed, nothing in it, powdered stevia at $23 a pound. Sounds steep but, a pound can last a long time. I used to use raw stevia and it was great on plain foods. All you need is a bitty bit.
    If you ever get to try another food with Fiala, consider steamed green organic bananas. They are very high in nutrition and I figure if diabetics do well on them, it may not be a problem for anyone who may have a sugar intolerance. There are some good web sites on green bananas and their benefits in case you are interested. Hope Fiala keeps getting better.
    jeanette

  6. i would so recommend the 20 panel ALCAT at home test if you can’t do the 50 foods. anyway, xylitol is a great choice. I would also recommend trying to add in coconut milk at some point. It would make such a yummy, creamy buckwheat cereal with the xylitol. Also, if you load up too much on one food you might end up allergic to that food also. There are several really good probiotics for infants. Here are the links…
    Many dairy free probiotics actually have some dairy traces…so make sure you don’t see reactions when you use them.
    These are definitely dairy free…
    Ther-biotics…

    http://whattofeedyourkids.blogspot.com/2009/09/ther-biotics-probiotic-specifically.html

    GI Flora…

    http://whattofeedyourkids.blogspot.com/2009/09/gi-flora-by-allergy-research-group.html

    Good Luck!

    • OK. Well, not to shoot down all your suggestions, but I have determined that xylitol was bothering her. So, I’m back to stevia (which I don’t really enjoy). AND, she’s allergic to coconut. Before we went to the doctor and I was looking for ANYTHING that might help her skin, I got a jar of organic coconut oil, slathered her up, and it made her WORSE. Then, when she was patch-tested for coconut, she reacted to it. :( I miss coconut. I used to make coconut milk ice cream and freezer pops, bake with coconut flour, I have about four different kinds of shredded coconut in my pantry…

      I am definitely going to do a rotation, when we have enough foods to rotate. I am concerned, like you, about her becoming sensitized to buckwheat (or anything) with over-exposure. Right now, she’s still only doing lamb, buckwheat, pinto beans (haven’t blogged about THAT awesome success yet!), and today I’m trying cabbage (I made some sauerkraut). So as soon as we have enough safe foods, I’m going to start a rotation.

      I spent a good 30 minutes scrutinizing all the labels of the different pro-biotics in my natural grocer’s refrigerated section. I was trying to find one totally dairy-free, that wasn’t JUST acidophilus, and that didn’t cost $30. I found one for $15. :roll: Country Life milk-free Power Dophilus. I did (previously) check out your post on milk-free probiotics, but I was looking for something that I could buy locally…. But, looking into your post, and clicking through the links, etc., led me to be convinced that it would be preferable to find a pro-biotic that had 3-4+ strains of different bacteria. So, your post was helpful! I just couldn’t find those brands in my store.

  7. Oh my, how did I miss that you bought some NZ lamb! Hopefully it tasted good. We export all our best stuff so feel privileged!

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