Wednesday, October 15, 2008

Dietary Changes--looking back at the GFCF diet

That GFCF diet--it certainly *is* a controversy in the world of autism, and thousands of parents have seen successes with it. We're one of them. Our DAN! doctor often says that "the child is the test tube", meaning that sometimes we go with what makes *her* feel better, not with what's been proven with science. Some interventions are too new to have gone through rigorous scientific testing--that doesn't mean that these interventions don't work! On the other hand, "the child is the test tube" does NOT mean we experiment wildly on her! The GFCF diet was one of those interventions that we tried, mainly to rule it out. We wound up ruling it IN.

My child was almost 22 months old when we removed gluten, and she was very locked into her own agenda, climbing anything in front of her, running, dumping anything she could dump, like a mini-tornado with no "off" switch, except when she would find a hair of mine that had fallen out of my head, and she'd take that hair to a corner and sit and string the strand between her fingers for long periods of time. She didn't seem to be able to "see" us or "hear" us at all, although I knew she could see and hear, because she'd hear something familiar on TV and come running, and she'd stand in the same spot in front of the TV and watch it out of her peripheral vision. She had quit turning her head to look for us when we spoke her name.

We saw no changes for three full weeks. At the 3.5 week point on the diet, she woke up a completely different child, able to "see" us and "hear" us again. I can remember my tears running down my cheeks the first time spoke her name and she turned all the way around to look at me to see what I wanted. And I didn't wait the recommended three months to remove casein from her diet--I did it right then.

Several professionals told me there was no science behind it, including the pediatrician, and my ABA person, who brought me articles explaining how there's no proof that it works. *eyeball roll*.

We're the ones who saw her eat ONE cheerio and completely regress for FOUR long days. We became very serious about the diet (and the ABA person who witnessed it with us finally shut up and quit bringing me articles about how there's no proof).

Okay, seven-and-a-half years have passed, and over the years we've experimented with digestive enzymes that help digest gluten and casein so that she could eat restaurant food and enjoy things her classmates at school ate (back when she was in public school), etc. At first, we used them for rare deliberate infractions, and then we began using the enzymes more often. Our daughter has struggled with severe eczema. And illness. Strep throat has been a frequent visitor. And her BEHAVIOR has become something we've had to deal with, because it was slowing intervention.

In the spring of this year, we had another round of bloodwork done, and the allergy testing gave us new information: She is reacting to a lot of foods, some I suspected, and some that just flat out surprised me. So, in July, we went back to strict GFCF again, plus soy free, plus a few more that showed up as "biggies" on her food panel as contributing to delayed food reactions. I am cooking a lot from scratch to avoid the stuff she needs to avoid, and her eczema has cleared up, her behavior has improved dramatically, and she's moving forward again. She's been healthier, too.

And then, we had an accidental infraction. (Most families don't have to plan deliberate infractions to "challenge" their dietary restrictions--accidental infractions pop up on their own!) On a recent Sunday, she snuck a piece of pizza--I heard her shutting the pizza box lid from the other room, and caught her with just the crust left, and I quickly gave her enzymes to try to minimize any damage. Well, a delayed food allergy can show up as long as FOUR DAYS later, and guess what? She's became sick, snotty nose etc, and Wednesday and Thursday, she was more resistant and defiant, less regulated, more easily distracted, with an extreeeeeeemely *short* fuse, and was exhausted from her behavior. Her face developed the outline of that rash again--and I think it's the pizza, that contains, I'm guessing FOUR of the big delayed food allergies on her list (I don't have an ingredient list for the pizza).

I've always believed in the connection between food and behavior, and yet, I grew tired of all the special diet stuff and used the enzymes to be lazy with it, not realizing the full effect of the impact on her system. CLEARLY, our issues are not JUST gluten and casein, and for folks who say they tried the diet and it didn't work, I would caution you to not rule it out until you consider some delayed food allergy testing. We had some done by US Biotek that gave me some information about my daughter that really surprised me in terms of the foods she's reacting to. Some professionals say the delayed food reaction testing is poppycock, but I've watched changes in my daughter over the past couple of months in her affect, in how she feels, in what she chooses to do with her time -- food is related to functioning and behavior, and I suspect our children on the autism spectrum are more sensitive than others.

And having typed all of that, there are certain things that my child does that prompt me to grab the flashlight and look at her throat to check it for strep. One behavior is a sudden drawing away from everyone, another is that short fuse and disregulation -- and it's just not what you think you're gonna see with strep throat. But it's been consistent w/ strep. Anecdote: I talked to a friend of mine a few weeks ago, and she mentioned being puzzled because her child was regressing, exhibiting some behaviors they haven't seen in a while, including obsessively stacking videotapes. I suggested checking her throat for strep, my friend politely dismissed the idea. She called me a few days later, laughing, to tell me I was right, even if she did think I'd lost my mind when I said it. (lol) They have a new DAN! doc, and when she told the DAN ! doc about the regressive behavior, he sent her for a throat swab and it was positive. (google "PANDAS" + autism for more info)

I've known for a LONG time that all behavior is communication, and yet, in some ways, I've missed the idea that some behavior is communication about a food allergy or an illness, not just "non-compliance".

1 comment:

Sierra said...

You make a great point about not giving up on diet after not seeing changes with straight GF/CF. More and more these days I am hearing of GF/CF as a "foundational diet". meaning that it is a place to start, but that you keep going and customizing the diet. My son (who is recovered off of the spectrum now) needed low histamine, lowish oxalate, removal of a lot of additional allergic foods, and NO SUGAR. Eating this way was controlling his symptoms but wasn't healing the underlying biochemical causes of his dietary needs. We switched to GAPS (basically a form of SCD) and he is now healing enough to be able to eat dairy every day (and thriving on it) and eating many other foods again. Diet is a long road that is worth pursuing, even if you don't get results right away.

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