Physical Attraction, Chemical Reaction

One of the conditions that my husband, Tim, gave me for putting Amelie back on the gluten and dairy free (GF/CF) diet
was that she was to be allergy tested. If a bona fide MD deemed her "allergic" to dairy and wheat, then he would be more receptive to a permanent diet change.
I had read and been counseled on a few things that made me slow to act to this request- mostly that gluten sensitivities do not show up on the standardized allergy test panels. We had observed so many positive results from the gluten elimination diet, that I didn't want some doctor's tests to come and debunk everything we've worked so hard to achieve.
Begrudgingly, I made the appointment with Dr. Tubiolo a pediatric allergist in Santa Barbara. In fact, my friend whose daughter has been diagnosed with Celiac Disease (an autoimmune disorder of the small intestine associated with sensitivity to gluten) had recommended Dr. Tubiolo, but also had said that she had finally got her diagnosis from testing done with a Homeopath. Tim is not so keen on the whole homeopathic thing.

We all went to the appointment together. They counseled us about what to expect which included a lot of questions, discussion and a 20 minute test where they stuck 3 panels of 8 common allergens into her skin to observe her histamine response.
Overall, she has allergic rhinitis and has probably inherited her father's tendency toward asthma. In the end, the only thing she showed an allergic reaction to was (drum roll.....) cats and dogs. Anyone who knows Amie knows that she loves (is OBSESSED with) all cats and dogs. I found this very ironic. Here we have been chasing this elusive "dairy allergy"- one that has her coughing into the night and bleary in the daylight- but all the time it was directly under her nose. Literally.
The one frustrating thing for me is that the doctor could not pinpoint an inability to process lactose and gluten with the tests he had. He did make that distinction, but the thing that stands out the most for Tim is his explanation of the "people out there" who would have you believe in these "miracle elimination diets". In a nutshell, he compared the faith in these diets to the faith one might have in religion. The diets being, in his opinion, not backed up by good science. He said that we had done our "due diligence" and now we just needed to ease up on the diet and give something else a try.

He asked us to try some mild children's allergy medicine for 2 weeks just to see if that helps. He explained how the annoying effects of a sensitive, allergy ridden child could be the very likely causing the behavioral issues we have been seeing.
So...another stone has been turned over. The answers and the path are never as clear as you'd like them to be- it's just hard to believe that it could be that simple. But, we're trying it for 2 weeks... doctors orders!

Denial and "Advocate Fatigue"

Throughout late fall and early winter of 2010 we had made some great successes. We completed Amelie's autism testing; changed her diet; hired a speech specialist; diligently took notes at our weekly meetings with Donna; did our homework and journaled all of our successes in our blue notebook...we were on track and improving by leaps and bounds!

Then, suddenly things came to a screeching hault. All of the sudden I started slacking off in different areas. First, because things were going so well, we decided that her wheat "allergy" was probably bunk and that we were going to embrace, wholeheartedly, the bread basket when it arrived at our dinner table! Gone were the enormous weekly shopping trips and meal planning. We began eating out more and I even would send parts of leftovers to school with Amelie for lunches. (always done with a pang of guilt...but with the internal excuse of having spent time with Amelie being more important than slaving away in the kitchen over the 'perfect' meal.)

I lost the blue notebook. Actually, I didn't lose it...I put it in a bag with all of our GFCF cookbooks, testing results folders and other info I've collected for this blog. I put it under a table in the back corner of my studio- ostensibly to have it all localized to construct this blog. I couldn't look at it anymore. My "new" Amelie had grown out of all of those behaviors and was well on her way to being a "normal" kid. Even having this blog felt like a betrayal to all of the other mothers out there who were dealing with a "real" spectrum child, so I stopped writing for it and thinking about it.

Gradually the reports of the "bad" behaviors started filtering back from school. Things like spinning, barking, blank stares, inability to call up answers or information, aggressive playing with other kids, meltdowns had become a thing of the past and were, again, rearing their ugly heads. As Donna put it, "It's like there are two Amelie's coming to school, and the old Amelie is back."

Then two things happened that hit me over the head- making me realize that I'm further from "normal" than I wanted to be.
1) We were at Easter Brunch and a woman said, "My son has Aspergers too" (unprovocated)
2) One morning as I dropped her off for school, I witnessed Amelie try to call up a story from the night before. It was painful to watch her try to pull the words out of her head and see the other kids...clearly more verbal...get frustrated waiting for her to tell the tale.

I cried all the way into work that morning. All of the sudden I realized that I just need to go back to square one. I had fallen off the wagon (one that was working!) and I needed to center myself and proceed. I had been experiencing what I call "Advocate Fatigue". I decided this time I would do a few things differently, more organized and planned to set us up for a bit more success.

1. I made a steadfast effort to make sure that Tim was on board. It took a couple of discussions (and, let's be honest, a few frustrating eye-rolls) but we are now 'on the same page' with the gluten thing.
2. I really planned my meals and leftovers for lunches to ensure I would not be having any more $200 grocery bills. I saved the plans to be used for later weeks so I wouldn't have to re do my work.
3. I took everything out of the house that could be a distraction for her- anything that I would have to turn down. That way, none of us would "cheat" and she wouldn't feel left out.
4. I started following recipies. Sounds easy, right? Yeah, instead of thinking in some 'Bridget Jones' way that every concoction I improvise will suddenly turn out to be a masterpiece...I now follow recipies so I'm not torturing my family with a limited diet of green mush (or brown kale flavored smoothies...)
5. On a non-diet note, I'm taking copious notes of my meetings with Donna that I have decided to post here. Hopefully that will help with my knowledge absorbtion as well!