The Full Spectrum: Going Gluten-Free

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The Full Spectrum focuses on the trials and tribulations of raising a child who ranks on the autism spectrum.

When S. was first diagnosed with a series of neurological disorders (ADHD, Aspergers and Developmental Coordination Disorder), one of my first thoughts was, “What can be done to make this go away? How can we find a cure?” Of course, I knew there was no way of curing a neurological disorder, but my instinct as a mother was to find a way to make all of S.’s problems disappear.

Early in my research I recalled that actress Jenny McCarthy had an autistic child and I had vague recollections of her appearing on Oprah and speaking about curing her son. So I went online and read and watched multiple interviews with McCarthy, who claimed to have “recovered” her child from autism through diet and supplements (biomedical intervention). I bought her book, Louder Than Words: A Mother’s Journey In Healing Autism, and read it cover to cover in one night. McCarthy cited examples of many parents who had “healed their child,” and I was at once excited and terrified. What if I couldn’t do it? What if I didn’t have it in me to be the “good” mom who does everything for her kid and finds the elusive “cure?”

I investigated the biomedical approach and realized that this program would mean cutting out gluten and casein (a protein found in dairy), as well as many other food irritants like egg and other yeast-producing foods (vinegar and sugar, for example). S. was already a super picky eater and fairly phobic of a lot of foods, which meant that he was already limited in what he could eat.

I started to reach out to friends of friends who had done the “autism diet” and would listen as each one exposed the virtues of the biomedical approach. One mother of four kids under the age of seven was especially compelling. One of her sons is severely allergic to peanuts, shellfish, egg, among other foods, and her younger son has autism. This woman had her entire family of six off gluten, casein and all the allergens of her anaphylactic son, and had implemented many other aspects of the biomedical approach including supplements, B12 shots and even no wireless internet or cell phones in the house (some research has shown this has a negative impact on the brains of kids on the autism spectrum).

As I listened to her journey for nearly three hours, I became completely freaked out. It seemed impossible to me that I would ever be able to implement what this mother was doing – and I only have two kids! Inadequate does not even begin to describe what I was feeling. She left me with a number of a naturopath and, as I waved goodbye, I was kind of wishing that I could give her my kids for a few years, just to “take care of the problems.”

For months, every time I checked our kitchen’s bulletin board to see about garbage day or a school event, I’d spot the naturopath’s number scribbled on a piece of paper. Each time, I’d feel a strong sense of dread; I knew that I would never really feel adequate until I went down the biomedical path. I was desperate to get my act together and join the ranks of “good” moms (and not the failure I felt like).

Following months of procrastination, I finally took S. to the naturopath. She did a whack of tests to determine if he had sensitivities to gluten and casein and, as predicted, she recommended I remove both of those from his diet. She talked me through some of the deficiencies with his enzymes, metabolism, yeast overgrowth and other complicated digestive problems that she believed could be affecting his behavior and development. She was extremely convincing. She gave us the plan and a way to ease gently into the process, and sent us on our way.

Months passed. We did nothing.

Over these months S. had lost weight, was not growing and constantly complained of stomachaches and nausea. He had dark circles under his eyes (very common for kids on the spectrum) and the best his medical doctor could do was “watch and wait,” which infuriated me. I kept struggling with my guilt and frustration but still couldn’t seem to take action. I just didn’t see myself as that mother: the one who has her shit together, who’s organized, efficient and able to get her kid off gluten and dairy.

And then something happened. My business partner, who’s also a good friend, insisted I take a few weeks off work and begin the process. No more excuses. It was a daunting task, and I began by sitting down with another close friend who has a daughter with Celiac Disease (gluten intolerance), and she walked me through gluten-free alternatives for the small list of things that S. eats (for example, gluten-free chicken fingers).

First I just eliminated gluten and, after a month or so, we took out dairy, too. S. was resistant at first and his food options dropped to around three items; but just as the naturopath had predicted, his palate started to open up and we were able to introduce new things. I was elated! Not only was I starting to see improvements in S.’s health – he gained three pounds in two months – but I also felt a serious sense of accomplishment.

It didn’t take long for my other neuroses to kick in, though, and pretty soon I was feeling like the slacker mom once again (for example, S. still had small amounts of casein in his diet). Would I ever stop beating myself up?

Recently a teacher at S.’s school wrote an email telling us how lucky S. is to have parents like us who do everything we can to help and advocate for our kid. I was so taken aback by her email, as I thought every parent out there would do the exact same thing – if not more – for his or her own child. It’s hard to live in our current culture where magazines and talk shows present us with people who have beaten the odds just by pure dedication and will. If we have a kid with challenges, the message seems to be we’re not doing enough or that we don’t love our kids enough. Which, of course, is not true. I’ve decided that the next project I’m tackling after the gluten-free/caesin-free diet is myself.