The Decision to go GFCF

There is a lot of research to support a gluten-free/casein-free diet for children on the spectrum. Although many medical doctors do not agree, I decided to listen to other parents and, as well, go with my gut instinct.

As a new mom to this beautiful baby girl, a miracle in our minds after our high risk pregnancy, we really wanted to do what was the most beneficial for our baby: breast feed. Some people believe that if you just stick to the breast feeding, you can do it. I have to say that this is not truthful. I tried absolutely everything to breastfeed my daughter (and would try again with my son 2 years later), but it was not so. I had pamphlets and books that specifically discussed breastfeeding. I went on blogs and did internet research when I realized how challenging it was. I had a lactation consultant come to my house. I went to three or four clinics at the local hospital with the breastfeeding nurse. Each time, she weighed how much breastmilk Sienna was getting - lots! Weird, I thought. Then why all the crying? In the end, after four months of enduring multiple infections and blisters (you know where!), we decided that enough was enough. We moved on to formula.

Looking back on that experience and knowing where we are now with the sensory needs that Sienna has, being unable to breastfeed makes TOTAL sense. For a child who: A) can become overstimulated by touch and being held, and B) has underdeveloped muscle control in her mouth (which we recognize now), how could this poor kid ever breastfeed? She took to the bottle in no time. It was as if she was starving! The nipple on the bottle likely allowed for her just practice sucking, rather than having to ensure that there was the "perfect latch". And a bottle also allowed her to have a little more space from the human embrace which was sometimes too overwhelming. Even as she got older, now that I look back, she actually preferred to sit in her little tilted rocking chair and drink her bottles on her own; no human-induced-sensory-overload.

Little did I realize at that time, what challenges formula would bring. We were so relieved that she was more content with the bottle and things seemed better. The crying seemed to alleviate at least during the night as she started to sleep more soundly. However, around the time we switched to formula (5 months old), I began to notice her becoming constipated. Our doctor suggested prune juice, which I wasn't too keen on and looked up alternatives on the internet. We began with baby food and tested out prunes and pears. They didn't seem to help that much and we moved on to prune juice. I couldn't wait until she was 12 months old so I could begin with milk because I was sure that the formula was attributing to the constipation. However, when we switched her to milk, it remained. It got to the point that I needed to assist her with bowel movements. I could tell when she needed to go and I had to rip down her pants, lay her on her back, and hold her feet above her head to assist with the process. Horrible... and no end in sight. We continued with increasing the fibrous food intake and encouraged water whenever possible.

Right before her first birthday, Sienna ended up with a bladder infection, while we were on vacation in Mexico no less! Anyhow, when we were home and had an x-ray to determine if there were any physical reasons for this to occur, the doctors told me that her x-ray revealed that she held all of her urine in her bladder until it was completely full before letting it go. Interesting... not a physical abnormality, but just atypical. Most babies released urine frequently so I was told. When we got to potty training around 2 1/2, I should have figured out why it was so challenging. But I didn't!

At this point, it was time to do some research. There were a number of things that just didn't seem right. Now I know that many children on the spectrum have digestive issues. At this point, I had begun suspecting developmental issues. For some reason, I read Jenny McCarthy's book about her journey with her son who has autism. While I don't believe there is a cure for autism, I do agree that there are many strategies that can be put in place to support the needs of a child with autism - which will lead to greater success in self-awareness and appropriate social behaviour. When Sienna was about 3 1/2, we had her food sensitivities tested by a naturopath. A friend had suggested it and was having her 3 year old tested too (to support the onset of childhood diabetes). The top ten sensitivities included cow's milk and all the grains in the wheat family. We had the doctor test Sienna for ciliac and got a negative result. Hence, the beginning of the GFCF diet.

We (well, I) was very rigid with the absolute elimination of dairy (casein) and wheat/gluten products for the first 6 months and what a difference I saw! This was a different child within two weeks. She was more alert, more active, and more willing to interact with people. That was enough for me to solidify that this was the right choice. It may have meant adding a little more to the grocery budget and plan a little more for meals and snacks but it has made a very big difference. I have since read that the most highly recommended diet for a child with autism is (of course) GFCF with an increase in probiotics, decrease in sugars, fresh organic fruits and vegetables, vitamin D, coconut oil, and high fiber - all which support digestion. Well, shouldn't we all go back to our roots and eat what our grandparents did? I know I should. My grandparents ate "off the land" and both lived into their late 90's!! As Sienna has gotten older, it seems that she does not like the lack of control she has over when she will have a bowel movement. So although the diet has been met with great success, we are still looking for some answers... I have learned that many children on the spectrum, because of sensory issues, continue to have challenges with digestion. We're still working on that and constantly asking ourselves what we can do to make the poop happen on happy terms! Either way, in my heart I believe that dairy (casein) and gluten make a huge difference in her ability to cope with sensory stimulation.

I have recently received my first issue of Autism/Asperger's Digest and in it, I have found a number of ads for gluten free products! Verification. Validation. And we are lucky to have great friends and family who make sure they consider Sienna's diet when they invite her over for playdates or birthday parties. I do my best to pack snacks for every outing. I'm not perfect... so I really appreciate when I'm out of emotional energy, someone else making the effort to ensure that Sienna remains GFCF. It takes a village to raise this child...