Now that Tula had the autism diagnosis, I found myself researching again, but this time circling back to those couple of articles I stumbled on stating that there was a gut-brain connection. I found evidence of a reduction in autism symptoms associated with a gluten-free and casein-free diet. But what the heck is gluten?? I also read that the earlier you do all of this, there is a chance of recovery. I was very skeptical but a little hopeful too. I just wanted to find a story of recovery, which was difficult. I shared all of this with Mike and he said that there was no way he would be switching his diet, but I became motivated to try this out with Tula. Grocery shopping uncovered some options, so I bought GF/CF muffins, cookies, bread and frozen meals. Although we were committed to following this new diet, we still stuck with our Friday outings at McDonald’s, modified with a smatter of healthy nourishment by including a bag of carrots and deleting the hamburger buns for Tula. Maybe this wouldn’t be so hard after all! The rest of the family stuck with our “normal” diet while I fed Tula differently. In the next few months, I noticed some small improvements! Tula had better eye contact and stopped trying to put everything in her mouth. We could actually go on an outing without Mike or I having to reach into her mouth to pull out bits of bark or rabbit poop. We were all encouraged! Aside from those two improvements, she was still exhibiting her other autistic behaviors. This diet was no slam-dunk!
A doctor that I used to work with told me that probiotics could possibly reduce her behaviors, so we started her on probiotic capsules and noticed some more improvements. She started hugging and wrestling with Thalia and laughed for the first time at something she thought was funny! Just these minor improvements gave us a glimpse of hope for the future. But there was still so much to help her with. I researched support groups nearby, finding TACA gatherings (Talk About about Curing Autism) where different speakers offered support. As it happened, an M.D. was slated to speak that very night! I had to figure out how I could attend, so I called Mike at work and had him come home early. The meeting turned out to be overwhelming, there was so much information. I was surprised and gratified to hear the M.D. speaking about autism as a “gut disorder." She foresaw the medical community eventually understanding and changing the description of autism entirely. The physician spoke about fermented foods, which I wasn’t understanding, so I skipped writing down that part. She recommended getting these kids tested from the Great Plains Laboratory (GPL) using the OAT (Organic Acid Test) and the Comprehensive Stool Analysis. Most insurance companies did not cover this, but the one company she specifically mentioned did, and we happened to have that plan! The doctor also discussed yeast (candida) in the guts of children on the spectrum. Again, another notion foreign to me. Looking back, I don’t think it was a coincidence that this talk happened on the same day I found this group online. There were many “whispers” for our family on the way to Tula’s recovery that made me think we were being helped all along and always pointed in the right direction.
The very next day I ordered the testing kits from GPL, but needed a signature from Tula’s pediatrician. I called him up thinking I'd simply request a candida test and ask for his signature for the rest of the testing, but the call did not go as I had planned. He told me diet had absolutely no impact on autism and asked for the name of the chiropractor who spoke at the meeting. As I explained that she was actually an M.D. and not a chiropractor, I could sense his frustration with me. He corrosively added that getting tested was a complete waste of time, and I needed to accept this diagnosis and move on. Trying to hold back my tears, I asked him in a shaky voice, “If your child had autism, wouldn’t you want to say you did everything you could?” He finally relented and said he would sign off on the testing for GPL, but not without making me feel like a crazy mom.
Trying to acquire a pee and poop sample from Tula nearly made me think twice about continuing this test. She was screaming on the toilet while I offered her bribe after bribe. After days of trying, I finally clinched the samples and sent them off to the lab.
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