I asked a friend of mine to share how a gluten and casein (dairy) free diet has changed her daughter's life. This is what she had to share. . . .
"Our daughter was diagnosed with high-functioning autism right around her third birthday. Like many parents, we began obsessively scouring the internet for research on what to do next. We researched therapies from the mainstream to the unconventional. Through our research, we encountered people discussing the importance of a gluten-free, casein-free diet for children on the spectrum. It would be mild to say that we were skeptical. We pretty much scoffed at the idea. How on earth could diet affect a condition that was neurological? My prevailing sentiment was, “if life is going to be more challenging for my daughter, she might as well be able to enjoy cheese.” And since she often restricted her diet to cheese, bread and milk anyway, the thought of taking those items away seemed impossible so we dismissed it out of hand.
Over time, our daughter’s symptoms caused us to consider that changing her diet might be worth trying. We began to notice that our daughter would vomit on occasion for no apparent reason. She would vomit for a day and it would pass, but no one else in our household would be ill. Her pallor was always pale with dark circles under her eyes and she struggled with pretty severe constipation. And when she did get the stomach flu, it would take her days longer to recover than the rest of us. It became obvious to us that something in her digestive tract was unusual, but nothing could be pinpointed. Overall, she seemed unhappy, uncomfortable and sick all the time. She would wake up most mornings with intense meltdowns, crying for sometimes close to an hour. Finally, after another episode of vomiting my husband and I decided to give the GFCF diet a shot. We committed to two weeks and that was all. We were so tired of seeing her look ill and unhappy all the time we figured we had nothing to lose.
We removed gluten and casein from her diet right after her fourth birthday and without a doubt, changing our daughter’s diet has given us the most significant results of any therapies we’ve tried. Within days off of dairy, she began to respond to questions without us having to repeat them multiple times. She reciprocated in conversation, which had never happened before. Her meltdowns became less frequent and less severe. Color returned to her complexion and her dark circles went away. The vomiting ceased. And best of all, she stopped waking up in a meltdown state. For the first time, she began waking up in good spirits. And the most surprising aspect of all was that she got on board with the diet. There was some resistance in the beginning but I think she was able to make the connection that those foods were making her ill. We would tell her we needed to change milks because we were afraid it was making her sick and she wouldn’t complain. Within a few weeks, she was pretty adjusted to a new way of eating and relatively okay with the changes. She still limits her diet quite a bit (like lots of kids on the spectrum) but she eats better than before.
In spite of these great changes, we tried putting gluten and casein back in her diet for a few weeks earlier this summer. I think this experience was the greatest proof we needed that the diet was working. Our pediatrician (who doesn’t have any faith in the diet) suggested we go off for a while. I was feeling fatigued by the limitations of her diet and thought it was a good idea. I mean, what if the changes were just developmental or results of her other therapies? So we went off the diet and hoped for the best. Within days, the volume and intensity of her meltdowns increased. She became less responsive and attentive and her sensory sensitivities seemed much more intense. And she began waking up in a meltdown state again. I felt like kicking myself for bringing cheese back into her life! Needless to say, it didn’t take us long to scratch our doctor’s plan and go back to eating GFCF.
Seeing the impact of being off the diet made us thankful to be reminded what a huge impact the GFCF diet has made. Honestly, I feel like it enables our daughter to enjoy her life and be happy rather than in pain. The diet isn’t a cure-all for our daughter. She still struggles with the impact of autism and has not been “recovered.” But I feel like it gives her a chance to be happy in her body, which she wasn’t before. I’ve read studies and speculation about why the diet works but being able to accurately explain “leaky gut” hasn’t had near the impact of seeing the changes with my own eyes, which is ironic since before trying the diet I would have dismissed my story as insubstantial anecdotal evidence.
Will the diet help all kids with autism? Sadly, probably not. I’ve read about people having tremendous results with their children and some having no results at all. In no way am I claiming that everyone will have results like we’ve experienced, even though I wish it were that easy. I wanted to share our experience in case anyone is questioning whether this would be a next step for their family. Obviously, we think it’s worth a shot.
*If you want to consider giving the diet a chance one very helpful resource we used is the book, Nourishing Hope by Julie Matthews. It broke down the nutritional aspect better than any book we read on the subject. It was very approachable and worth checking out at the library or purchasing at Amazon. TACA.org is also a very helpful organization that can help get you started."