Introducing… Curly Girl! (Part 2)

Curly Girl, age 4 1/2

In our last episode, Curly Girl was diagnosed with autism and we placed her on the gluten-free, casein-free diet (GFCF).   After our confirmation that the diet was working (the couch incident) we began to see small improvements.  Therapists from Birth to 3 began working with her at this time also.  At the age of 33 months, Curly Girl made her very first stack of blocks.  Shortly after her third birthday, she started speaking.  (I cannot for the life of me remember her first word.  I really should write this stuff down.)  She started attending Early Childhood classes at the local public school, and we made slow progress.

At this point, I feel like I should mention some of the mistakes we made in the early days of GFCF.  I knew that wheat & dairy were off limits, but I figured anything else was fine.  Curly Girl ate a whole lot of potato chips, popcorn, jello, marshmallows and equally junky food.  But it didn’t have wheat or dairy!  It also had zero nutrition.  And all that sugar and starch just fed the yeast & pathogens in her gut, making her leaky gut even worse.  Couple that with a continued string of antibiotics for various illnesses… I shudder to think of what we did to her poor gut.  Still, GFCF was enough to keep her moving forward.

Curly Girl did continue to make progress.  Her speech improved, her behaviors improved, she began to draw & write.  She taught herself to read one summer by watching phonics videos!  She began to allow us into her world just a little.  But there were still some things missing. 

When she was around 5 years old, our family doctor (who is also a DAN! doc) suggested we try the Specific Carbohydrate Diet.  He said we didn’t have to, but it was an option that some families were having success with.  Well, if GFCF was hard to implement, SCD looked nearly impossible.  No sugar?  No potatoes?  No corn?  No rice?  Again I found myself asking, what will my child eat??  Still, I wanted to do the most I could for my daughter.  So we decided to try it.

Again, we saw tremendous improvement!  Curly Girl made enormous leaps and bounds during the time on SCD.  Her speech, eye contact, and ability to attend to a task all improved.  She also had improvement in bowel movements.  (Sorry it’s gross, but BM’s are a big indicator of gut health!)  On GFCF she frequently had unformed, almost diarrhea type stool, and on SCD they became nicely formed and regular.  It looked like SCD was working.

But we still had a problem.  Between the limitations of the diet and Curly Girl’s self-limiting, she was down to just a handful of foods she could/would eat, and a couple of those were “compromise” foods.  Eggs, bacon, applesauce, orange & grape juice, and hot dogs (definitely a compromise food!)  As she became more aware of others around her, she also became aware of all the food she couldn’t have.  She started asking for other foods.  At the time, I didn’t have the knowledge, the creativity or the energy to figure out how to create those foods and make them fit within her diet.  She also started to lose weight.  She was a skinny thing to begin with, so that was a big deal.

We had been on SCD for about a year.  I knew her gut had healed somewhat.  We decided to try a “regular” diet for a while and see how it went.  Not GFCF, but regular food like the rest of us ate.  That was a bad idea.  I don’t know what I was thinking.  I wanted her to be normal, and I wasn’t being realistic.  She did okay for a couple of weeks and then things got ugly.  It was obvious that we needed to go back to a special diet.  Instead of returning to SCD, we went with GFCF again.  It was less restrictive, more familiar, and GFCF food had become more accesible in our area.

Again, I need to point out some mistakes I made when implementing SCD.  For one, we never did the intro part of the diet.  I tried, but she wouldn’t eat the intro foods.  So I just let her eat anything on the allowed list.  I also failed to introduce probiotics.  This is a biggie.  SCD works by starving the bad bacteria in the gut, but you have to introduce good bacteria to take its place!  I didn’t do that, and I really should have.  Lastly, I allowed too many compromises.  To really work, one needs “fanatical adherance” to the diet.  I wasn’t able to provide that.

So, there we were… I was tired of being the food police.  Curly Girl was happy to have french fries again.  And that is how we continued forward…

(Stay tuned for Part 3!)

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3 thoughts on “Introducing… Curly Girl! (Part 2)

  1. I’m so glad you’re writing this timeline of events as a way to introduce Curly Girl. Your writing is very easy to read and you write as though you were talking to me over the kitchen table. Keep up the great writing.

  2. Thanks so much for sharing this! I am truly intrigued by all of it. And how adorable that “Curly Girl”of your is! Beautiful indeed! One question…you’ve refered to your doc and being a Dan! doc 2x now….what is that????

    • DAN! stands for Defeat Autism Now! DAN! docs are trained to treat autism with a biomedical approach, meaning they use diet, supplements, natural therapies, medication only when necessary. They see autism as not a psychological disorder but as a medical condition that affects the whole body. See http://www.autism.com for more info.

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