GFCF. . .The Beginning of Recovery from the Autism Odyssey
Most everyone remembers the moment they were told their child was autistic. They remember the feeling, the shock and the true meaning of panic. I wager there are many out there who remember their first trip to the grocery store when they finally decided to try the GFCF diet.
Our autism odyssey began at the young age of 16 months when our son’s physical therapist remarked that he was displaying autistic symptoms. By 18 months he had the diagnosis and by 19 months he was in ABA therapy. At 18 months green “farm animal looking” diarrhea hit with a vengeance. We’re talking about 20 green diarrhea diapers a day and a child who would scream inconsolably for two hours at a time. When we asked the neurologist what to do for our son now that we had the diagnosis, all he said was “Well, don’t feed him seawater like I had one parent do. They had heard that it had magnesium so they went to the ocean for seawater.” Now how is that for desperation on the part of a parent because the doctor could not help them.
For our part we knew that there had to be an answer for the diarrhea. We got the usual information from our pediatrician: bland diet, applesauce, etc. So our moment of desperation included a trip to see a Contact Reflexologist. For those of you who are unfamiliar with this it is a weird version of chiropractics. I am not saying it is totally without merit but it must be challenged as a form to treat autism. The “doctor” had me hold my son on my lap and then had me hold out my left arm. She put food sources from vials around my son and then would press on my arm to see if “energy” was lost. She put up milk and my arm went down like a lead balloon. She put up wheat and it also went down. She put up a bunch of other allergens and nothing happened. So she concluded to remove my son from milk right away and then wheat.
I thought milk was probably easiest to eliminate but was skeptical about wheat removal. Okay, truth be known, I was more concerned about the inconvenience of removing wheat. Besides, might she be a crackpot? But within one week of dairy removal my son stopped waking up screaming after his naps. Inspired I removed wheat but only half heatedly. The diarrhea never stopped and now my son was beginning to truly demonstrate autism symptoms by banging his head on the wall and writhing on the ground.
Thank god for the internet because as I sat in front of my computer crying I begged prayerfully for any answer. I finally typed in “dietary intervention autism” and up popped Lisa Lewis’ book “Special Diets for Special Kids” and Karyn Seroussi’s book “Unraveling the Mystery of Autism” . I ordered them right away. Once I understood the WHY to do the diet, a gluten-free/casein free diet, I began in earnest but did everything WRONG. First, I wrote down the names of all of the weird flours under the recipes in the books and then I went shopping. I am sure many of us can relate to this buying trip because ultimately the flours sat in our pantry for six months before we used them or tossed them from old age.
Cross contamination was a whole other issue that I didn’t fully grasp. Nor was the overuse of soy an issue at the time. . .until my son got worse. Finally we buckled down and went 100 percent on the diet and saw a huge change in our son’s behavior. After three weeks on the diet we blew it again and vacillated a little here and a little there. After a couple of weeks of vacillation we had a child in FULL regression. I will never forget the OT therapist looking at me in desperation as my son screamed and flailed. She asked if we had put him on a new drug because he had lost six months of progress overnight. I cried and said “It’s the diet. He is on drugs and the drug is food.” I cried during a phone call to my husband and swore that I would get better at this but needed his help. Our son’s recovery depended on us getting good at this.
A few months later our son’s diarrhea worsened to the point that he fell off the growth curve. An endoscopy revealed that he had erosion of the esophagus, stomach and upper intestine. The gastroenterologist could offer no explanation although she knew about our excessive use of soy. We discovered when we ran out of soy yogurt that his diarrhea disappeared. Then Lisa Lewis’ second book came out and explained in detail how the overuse of soy causes this type of erosion.
We were fully on the diet for six months when we met up with Dr. Sudhir Gupta, an immunologist out of University of California, Irvine. He is the immunologist reputable for his studies of treating autism with immunoglobulin, to build the immune system and help to heal the brain. After running tests on our son, Dr. Gupta concurred that he would possibly benefit from starting IVIG infusion. We began a month later, not really caring whether or not our insurance would pay. We knew we were battling time to save our son’s well being.
The infusions affect were dramatic to say the least. Our son went from two words in January 2002 to full sentences by July 2002. His lab results improved dramatically as well. By the time we visited Dr. Gupta in June for a follow up visit he was looking at a different kid than the one in January. Dr. Gupta was all smiles over our son’s progress. He credited the diet first because he noted it would not have been as effective if we were still putting in the “poison” food. By August of last year we met up with his DAN doctor (Defeat Autism Now) to review his labs and progress. She joyfully concurred that he won the autism lottery and would FULLY recover. We truly knew this would happen (yes, even in the moments of pure hell). It was good to hear, especially when she told us that she hoped we had not touched his college fund because he was going for sure.
It was so much fun to put that part in the Christmas letters we sent.
The DAN doctor asked me why I believed we were blessed with this set of circumstances while others were still struggling to help their own children. I had to believe that it was because I was meant to help the next parent but I would not be able to do it if we were still working on our son’s recovery efforts. We still do IVIG, the diet and look into the next treatment, but we now have the solid hope of recovery.
That said, I knew that it was time to reach out to the next parent by helping them in ways that I had needed most, but did not receive. I put together a checklist of sorts of what to do once your child is diagnosed. It is a BASIC checklist of about ten points which includes getting educated, hooking up with an autism doctor, buying Lisa and Karyn’s books, starting the GFCF diet, getting good at the GFCF diet, etc. Amazingly I have sent that checklist out or printed up for dozens of parents as they were beginning the autism odyssey. I even had to print “business” cards because of how often I was being asked for my number or email. The title on my business card is – Parent Mentor, Dietary Intervention for Autism/ADD/ADHD.
Since starting as a self-appointed parent mentor I have been introduced to some of the most amazing parents, who are initially panicked, but hopeful that they can help their own children recover from autism. I first explain to them that there IS recovery in autism and/or improvement of symptoms. I also explain that they do have the capability to research and implement whatever is needed for their child. Beyond the hope I also coach them on how to do the diet without killing themselves in the middle of the grocery store. I am a big believer in ready-to-eat especially early in the diet. I encourage them to take a gradual approach by eliminating dairy first for two weeks and then to eliminate gluten one meal at a time finding five items for each meal that their child will eat. I point them in the direction of websites to order food and supplements. Bag mixes can be added once they are beyond ready to eat, and THEN they should branch out and try a GFCF recipe from scratch.
It is amazing to discuss the condition of some other child’s bowel movements without flinching. We discuss behaviors with the least of chagrins as we move on to the catalyst of discussing how the doctors were of little help to us. I have even received phone calls from doctors asking for advice for their children because their own colleagues were unable to help them. How ironic that another parent is the one who gave these doctors hope for their child!