This blog explores the impact of gut health on autistic children and how I tried everything to help my son have better gut health. Gut health plays a crucial role in our overall well-being, often referred to as our 'second brain.' Many autistic individuals experience poor gut health, which may show up through behaviours, dysregulation, and signalling internal distress. Since infancy, my son Shashwath has struggled with gut issues. He often cried for hours at a time and would sometimes giggle inexplicably. As he turned a year old, I realised he was on the spectrum and started reading up on autism and the gut. That’s when I stumbled upon the GFCF diet (wheat-free, milk-free) and its miraculous impact on behaviours. I only saw the positive aspects of the diet, and like any other autism parent, I wanted this to work for my son. I hadn’t anticipated the impact this diet would have on our family’s emotional and mental well-being.
How and when I started the GFCF diet
When Shashwath was four, after consulting some therapists and also conducting a battery of allergy tests (which were inconclusive), I started a gluten-free, casein-free diet to help him with his sleep and colic pain. Shashwath would wake up in the middle of the night (every night) with severe colic pain. My husband and I would take turns holding and rocking him to pacify him. It would be two hours of agony and crying, colic aid medicines, and finally, he would fall asleep. The diet helped put an end to that pattern. It helped with leaky gut in the initial phases. At that point, I was elated and thought I had discovered the answers to all my son’s challenges.
The impact of the diet on our lives
The diet created feelings of isolation for him, as he could not join in at parties or eat food at social gatherings due to the restrictions. We always brought homemade gluten-free and casein-free foods for him. Vacations were difficult, as I needed to pack his meals and cook wherever we stayed. I frequently felt anxious that he might have an allergic reaction if he ate any restricted foods. Our lives became challenging. While he was on the diet, we also relied on support from doctors to improve his gut health.
Did the diet help with hyperactivity?
The GFCF diet did not help with his hyperactivity. Shashwath was always an active child. His need for constant movement was always frowned upon by the mainstream school he was in and his therapist. He was on a sugar-free diet as well as GFCF all this time. We often wondered how he managed to have so much energy despite all the dietary restrictions.
At the same time, I was worried about his nutritional deficiencies as he could not have supplements without reactions. So, I tried to give him as many foods as he could have, following the diet very diligently. The only way he could calm down was with physical exercise and yoga at this point. I took him to a paediatric neurologist for help with his hyperactivity, who prescribed too many medicines despite my repeated reminders that his gut health is poor and he might have reactions to them. With the medicines his gut health went from bad to worse. He had GERD (Gastric Oesophageal Reflux Disease) symptoms for three years, even after we stopped those medicines. My son wasn't able to eat or sleep without discomfort. His recovery happened slowly with simple, bland homemade food along with some guidance from our family doctor.
The quandary of stopping the diet
criticised All those years my son was on the GFCF diet, the feelings of exclusion from all kinds of celebrations persisted. I had a constant feeling of guilt for denying him his favourite foods. I felt that this diet caused emotional upheaval in our lives. After starting the diet, I didn't know how to stop the diet without causing a reaction.
How did we stop the diet?
Three years ago, I decided to stop the GFCF diet. I reintroduced his restricted foods in small amounts so that his body could adjust and digest them. It was scary at first; I constantly worried and criticised myself for monitoring every possible reaction, but gradually, I began to believe he would be able to enjoy all kinds of foods.
Fortunately, I found a doctor who helped my son deal with the food reactions and improve his gut health. We also consulted a psychiatrist this time, who dealt with autistic children and understood the reactivity to medicine and food intolerances and more importantly, believed me when I reported any reaction to medicines.
The psychiatrist pointed out that my son’s immune system could be hypervigilant, leading to these food intolerances.
With the help of both doctors, we managed to help him eat whatever he wanted. We are cautious as he still has reactions to some foods. But overall, the quality of life improved after removing the dietary restrictions. Eating healthy, fresh, homemade food, fruits, and vegetables is the mainstay of his diet even today. But now, once in a while, he can eat out and travel happily without having to worry about his food intolerances.
My message
My blog is not medical advice, nor am I trying to blame the GFCF diet. It didn't help my son because he wasn't allergic to foods; he had food intolerance, and his gut just needed a break from some foods briefly. Blindly following a diet like GFCF without a nutritionist by your side may not help. My son was underweight, gaunt and thin throughout the time he was on the diet. He has gained weight and height right after I introduced previously restricted food items in his diet.
Breaking the diet felt liberating as it reduced his frustration. My son is a total foodie and is keen to cook all kinds of food. We now look forward to a beautiful future where I see my son cooking and eating foods he loves to eat, leading a healthy and happy life.
