When Roo was 2 1/2 we were still starting out on this journey. We had been told that his excessive ear wax was the source of the problem and that we needed to get it out. After 6 months of trying without success, our doctor (a naturopath) suggested to us that a food allergy could be the cause of the wax buildup. We had no idea what food it might be- he had no acute reactions to anything. We weren't going to do a blood test, so we felt at a loss of where to start. I had worked with children with autism before having my own kids and I remembered that there was this "gluten-free, casein-free" diet that some people were using. Well, we had been assured that Roo didn't have autism, but it seemed as good a place to start as any. While we were at it we threw in some "anti-yeast" diet aspects as well (although we dropped these after the first week). It was from these modest beginnings that my obsession with diet intervention would develop.
Before the diet, Roo had essentially no words. He would sometimes count from 1 to 10, always correctly (which we found very suspicious), but no functional language. By the end of the first week on the new diet he had said over 30 words. I don't think many had been functional, they had mostly been echolalic and many were not used again for a long time, but it was an obvious improvement. We were religious about the diet and from that time on we were hooked on special diet. Roo had been on the diet for 6 months before we took him in to be evaluated at the age of 3, and I think the gains that he had made in those 6 months are part of why he got no formal diagnosis. Looking back I still think that a diagnosis of PDD-NOS would have been appropriate.
The next step for us was food allergy testing. We did some testing via a machine called EAV testing, which is similar to muscle testing. It showed Roo was sensitive to dairy, wheat (but not gluten), and refined sugars. It may have shown a few other random things, bu the big change was taking out all refined sugar (cane, corn or beet derived) from his diet. We saw more improvement. For a long time we focused on other treatment approaches and didn't tweak the diet. When we started seeing a DAN! doctor (DAN! stand for Defeat Autism Now!, and these doctors have specialized training in diet and biomedical treatment) we did a blood test for IgG sensitivities and now there was another long list of things to avoid, including grapefruit, coffee (??), apple, egg, mustard, oranges, peanuts, and watermelon. His diet got more restrictive, and he again continued to improve.
When we first began seeing the new DAN!, we had just had an Organic Acid Test done from Great Plains laboratory. One of the things it showed was high oxalic acid which eventually led us to look into reducing Roo's oxalate intake. This meant no almonds, spinach (he didn't complain), beets (which he actually liked), kiwi, black pepper, or chocolate. I don't remember if we had already eliminated soy or if we took it out at this point. We didn't actually put Roo on a low oxalate diet, we just took out things that were very high in oxalates. Another big improvement.
After addressing the allergies and oxalates the next dietary step was removing high histamine foods. We discovered the histamine sensitivity by accident when his brother developed seasonal allergies and some mild OCD behaviors one spring. We then removed all berries, pineapple, anything fermented, aged or cultured, all processed meat, spinach, most spices, and tomatoes (see the post on the low histamine diet for the full list and the reasons behind it). At some point we wee careful to remove artificial dyes and colors and anything else petroleum-based, as well as MSG and glutamate. The big change from this was taking out yeast extract and nutritional yeast.
We had gotten to a point where Roo's diet was so complicated and restricted that I tried to avoid discussing it too much with people. Roo had made so much progress with the diet changes, and had also made so much progress with the biomedical treatments. During this time we began fighting yeast in him and that was one of the really effective treatments that we did. We kept it up for a long time, and made great progress, but eventually it became clear that we would need to do more through diet to address the yeast. I began to be very aware of how much starchy white food he ate. Every time I gave him starchy food I would think about how I was throwing the yeast a party.
Around this time, a good friend brought my attention to the GAPS diet (GAPS stands for Gut and Psychology Syndrome). I had been aware of the Specific Carbohydrate Diet for over a year, and had thought that it would probably help but that there was NO WAY that I could actually do it. When people talked about it on the message boards they usually said a variation of "this is the hardest thing I've ever done, but it has been incredible and worth it". I was just coming around to the idea of trying SCD when I r4ead the GAPS book. It turns out that GAPS is based on SCD, but has added some very important aspects to it. As I read the book I had sinking feeling that now there was no turning back. It all made sense, and now I would have to do this diet. I knew it was true and I knew it would help Roo's body actually heal, rather than simply avoiding future damage, which is what the other diets were all about.
In January of 2009, we just did it. It was like jumping off of a cliff- if you stand there too long and allow yourself to think about, you freeze and never do it. I knew this would be miserable and hard and that there was no way around it but through it. Roo screamed and barely ate much the first 2 days. On the third day, he had a fever and couldn't keep anything down- even drops of water. It was horrible, I felt so guilty because I knew that I was causing this. When he woke up the morning of the fourth day a fog had lifted-he was in a clearer state then he had been in since his regression. Something in his body had died on day 3 (or possibly it was withdrawal from a food addiction) and it needed to happen, as painful as it was to watch.
Three months into the diet he had improved enough that I could begin taking him to library storytime. He started to really WANT to be with other kids and be part of the group. He carefully observed them for clues of how to interact. He became happy and socially outgoing. His language improved. Basically, he "woke up". Now, nine months into the diet, he is able to attend preschool (yes, even though he's 6) without any modifications at all and he is thriving. He has friends and is well liked at school. His body has healed enough that he can eat cheese and cultured butter (he was profoundly sensitive to dairy before GAPS). His diet has begun to expand for the first time- he can tolerate more oxalates and more histamines, and is no longer allergic to many of the things he tested allergic to in the past. He is no longer on the spectrum. The two issues that he is left with from his time spent on the spectrum are a language delay that is still pretty significant, and an anxiety problem, although that has improved about 75%. There have been a lot of things that have helped him get where he is today, but the GAPS diet has been key.
