This Is My Autism: Leaky Gut & Special Diets

Yesterday, I posted my friend Jackie’s piece, Stages of Emotion, which is Part 1 of her contribution to the This Is My Autism series. She talks about the emotional roller coaster of the autism diagnosis, ending with springing into action to help her child. This piece is Part 2 and it’s a must-read for parents new to the autism diagnosis. Many children with autism have digestive issues (see here, here, and here), and dietary changes can have a dramatic impact on children with autism. Eliminating foods and trying a new diet can be intimidating, but there are many resources to help (like here and here). And all parents on the autism journey should know that there are amazing organizations offering help, support, and hope. Jackie talks about Generation Rescue. Also check out: Talk About Curing Autism (TACA), the National Autism Association (NAA), and the Autism Research Institute (ARI). Remember always that though this is a difficult journey, every child with autism can improve. There is always hope. 

The day after my son’s 4th birthday and a night full of emotions I went into full blown “mother warrior” mode. I had read many times over and over that children on the Autism spectrum suffer from medical issues that are often overseen. I read they could have nutritional deficiencies and gut issues. But I had always brushed it off because my son never physically showed any signs of medical issues. I decided to look into this some more.

Leaky Gut

In my reading, I kept coming across children having leaky gut from food intolerances to gluten, casein, and other foods. Leaky gut is when your intestinal wall develops microscopic holes from chronic inflammation (caused by these intolerances and toxins), which causes tiny food particles to go into the bloodstream and to the brain. They affect the brain similarly to an opioid drug. They also can cause an autoimmune reaction in which the body creates antibodies against foods when you eat them. I read that there are standard medical tests to detect excessive amounts of bad bacteria in the gut, parasites, yeast, viruses, food allergies and heavy metal toxicity. Even though I kept doubting what I was reading, I kept wondering if my son could be suffering from any of these medical issues? I had to find out. I needed to know if he was in pain or sick.

But I had no idea where to start. Doctors usually don’t do testing unless there are obvious symptoms. What testing would I even ask for? Through my network of autism mommies, I found an organization called Generation Rescue. Among other things, GR provides autism treatment to families and gives them access to specially trained physicians, lab-testing, and nutritional counseling. It was free and they stated that 100% of grantees have shown improvement in their ninety-day program. The only requirement was that the child be on a gluten free and casein free diet during the program. We had nothing to lose! I applied and we thankfully got approved for this program.

The GFCF Diet

We immediately took my son off gluten and casein, cold turkey. It was hard in the beginning but I figured it would only be for three months and we could make it work. When we first started the gluten free, casein free (GFCF) diet, we didn’t notice any immediate changes, But, in two weeks, we were about to be shocked.

Our little guy who was completely nonverbal started not only pointing (he never pointed to objects) to an alphabet chart we had on the refrigerator, but he also said each letter as he pointed to it! I literally fell to my knees and started crying. I didn’t even know that he knew the alphabet, and here he was saying it (not very clearly, but he was saying it)! Was this a miracle or was the diet helping?

Another huge change we saw was that he wasn’t getting sick as frequently. It was two months into the diet and he had not gotten sick once. You see, my son used to be sick all the time. He would start getting a cold and develop a fever of 104 degree or higher, often lasting for three days. Then he would start coughing and have this hideous cough for 2-3 weeks. He would then start getting better and it would start all over again. Pediatricians kept assuring me this was normal. I later found out that his immune system was so “busy” attacking his food intolerances (since they were entering the bloodstream) that it was working overtime and not attacking viruses that were entering the body the way a normal immune system would do.

Other Medical Issues

We went to see a doctor assigned to us by the GR program and he ordered the labs and testing to determine if my son had any medical issues. One month later we received the results. My little guy had just about everything I was reading about. If it wasn’t for seeing it on paper and being told by the doctor, I would have never believed it. Testing showed yeast and bacterial overgrowth, zero healthy gut flora, gut inflammation, immune deficiencies, vitamin and mineral deficiencies, and metals in the body. How could this be? I have always given my child the best care possible. He was a healthy eater and took a daily multivitamin. Why?

Treatment

I was scared and sad but I promised myself I would do everything possible to improve his health. It was no longer about Autism – it was about having a healthy child. Immediately, we started supplementing vitamins and minerals. We gave probiotics to replenish the good gut bacteria. Then we gave antifungals to kill the yeast. We permanently took out gluten, casein, and other food intolerances to help heal the gut. All of this was done under the supervision of a doctor.

Promising Results

It has been over a year since we have started healing our little guy. As his health improves, so is his development. I feel that getting him the vitamins and nutrition his body needs, and getting rid of the gut bugs he doesn’t need, has enabled his development to start back up. Finally, he started showing progress with therapies. He is speaking. Though he is not yet conversational, he is saying words and his vocabulary is growing. He is writing and starting to read. He is also quite the artist. Everyday, he surprises me with the things he does in school and how quickly he learns. He has amazing team of teachers, therapists, and aids (in and out of school) who have taught him so much and helped him incredibly. They have taught me so much as well. I am so grateful to them.

He still has his struggles, but luckily he is surrounded by loving and patient people. I am so incredibly proud of him and I am so lucky to be raising my hero. I am sharing my story because I want others to know that some children with autism and developmental delays might have underlying medical issues. And that treatment of those issues can help them feel better and help them progress even more with traditional therapies and in school. I also want autism parents to know that they are not alone. There are so many wonderful people, groups and organizations (local and national) that offer families and children with autism much needed support. You can easily go online and find them. Lastly I want you to trust your gut, keep fighting for your children, and always remember you are your child’s best advocate. Thank you for reading.

Jackie is mom to Santiago, age 8, and Tatiana, age 6.  She shares her autism experience to give hope to others.  Jackie is a contributing writer for her town’s local magazine and writes about living a cleaner and healthier lifestyle.  She owns Green Vida Co. in Bangor, Pennsylvania.  As the mother of a son with Autism, Jackie recognized the positive effects a nutritional diet with real, quality ingredients had on his physical and behavioral health. Now, she shares her passion for wholesome food with her community through her business.