Sunday, January 30, 2011

Gluten-free but still, something’s not quite right…

I guess you can call it “Momtuition” but do you ever just sense that something’s not quite right with your child? I’m sure I heard Jenny McCarthy talk about it touring for her first book about her son’s autism and I believe there is some truth to it. I mean, you just know. Maybe because I’m with her all day every day, but you can just tell when there’s something different from the other kids that’s not quite right.

When I began Kate on the GF diet the doctor mentioned I could see an increase in energy and her potbelly could trim down a bit. Well, as we went along the process, I did see the eczema clear up but I never really saw that energy and her belly never shrunk.  Whenever I expressed concern about this to other parents or family (I was looking for someone else to see what I saw) everyone just said she was a mellow kid (and I should consider myself lucky!) and had a cute belly.  She not only had a belly, she never seemed to shed her baby fat the way other kids her age did.  She had a good appetite, but she didn’t eat junk so I could never tell where the weight gain came from.  Again, people (including my pediatrician!) either said, she’s just chubby, get her to exercise more, or she must be having a growth spurt because they tend to gain weight just before. OK, but for over a year!?  I looked back at all of her specs from her check-ups with her height and weight and somewhere between her 1-year and 2-year check up, her percentile for weight went from 50% to 90%.  What happened in that time?  She eats healthy, and even though she isn’t high-energy she gets exercise.  What’s going on?

I noticed she’d get little, faint red spots around her mouth and chin whenever she ate pasta.  Thinking about foods again, it has to be the tomatoes, I thought.  I tried taking her off of pasta sauce (jarred sauce, by the way) but no other symptoms went away.  Not tomatoes. There was a weekend where she didn’t have any bread stuff and a couple days later she seemed to have a trimmer belly and great energy. Of course by the end of the day the belly was back, but it got me thinking. Maybe it’s yeast?  Bread has yeast!  So I tried taking her off of everything with yeast in it.  No, Damnit!!  I obviously wasn’t going to figure this out on my own.  I was convinced something was wrong and I needed professional help.
I called the ND, about 1 year after the appointment when we determined gluten was causing her eczema, and told her I suspected something else was going on and I couldn’t figure it out.  I wanted to run the blood test on Kate.  She was reluctant because it involves squeezing out a little blood and the tests aren’t 100% accurate.  I told her I’d rather have my daughter be healthy and hate her forever than go through life not living up to her body’s best potential.

Kate was a trooper during the blood test and the doctor saved the day by remembering the lollipop she had in her purse.  A lollipop AND a band-aid, she thought this was actually one of her better days! 
Now I’ve been going through some medical stuff and whenever a doctor runs a test on me the results are always the same, “The good news is the tests are negative. The Bad news is, we still don’t know what’s wrong.” Grrr, right? So this is exactly what I was expecting with Kate’s blood test, but at least I would know. I’d have some sort of answer. (I tend to need answers, even if it’s what I want to hear, just SOME answer.) Two weeks later I got the results: eggs (white & yolk), sugar (cane), and garlic.  On a scale of 0 to 5 (0 being no reaction, 5 being strong reaction) eggs were a 4 and sugar and garlic were 3’s.  (How this translates to her future diet, I can probably rotate sugar and garlic into her diet more frequently than the eggs.)  Again, first reaction was “crap” but then it made sense, even the garlic (pasta sauce!).   It probably wasn’t the yeast in the bread, but the eggs.  And when I tried to remove the bread, there were still other foods with eggs in them.  The doctor provided me with some information on egg substitutes and we talked about how I can find gluten-free mixes that don’t have sugar and replacing her Omega-3 supplement that has cane sugar in it. 

The eggs will be pretty easy to replace because everything I make I add eggs to, and milled flax seed and a product called Egg Replacer by Ener G are good substitutes and are readily available.  Also, many GF products are also egg-free, like the waffles and pretzels. I asked the doctor if these were common allergies to have together and she said it does often happen, but the companies making allergen-free products tend to cover as many allergens as possible to reach a wider market. Lucky for me!  Until I started reading all the labels: those awesome GF waffles Kate loves so much: sugar, GF bread mix: sugar, GF cookie and brownie mixes: don’t even bother, GF granola bars: sugar (although I may find honey-sweetened bars, haven’t looked yet), Corn Chex: you guessed it, sugar!  I was able to find sugar-free pasta sauce, but D’oh! Garlic.

So, Kate’s got to eliminate each of these allergens for 3-weeks and I’ve got to make it happen for her.  After 3 weeks, I can let her have some (one at a time, including dividing egg whites and yolks) to determine just what reaction each allergen caused.   Then it’s 6 months to get it out of her system before I can start rotating these things into her diet.  I’ve been through this before with the gluten, so I know we can’t do it cold turkey, it’ll take some time and then one day we’ll start the 3-week detox.  Eggs will go first, than the garlic and sugar as I’m able – I doubt I’ll be able to remove all at the same time.

Here we go!

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