One of the best things about participating in different autism congresses is having the opportunity to meet some of the attendees.  Rénee was one of those that came to me once after a lecture regarding the use of TMS.  She understood most of the theory, and not surprisingly, I share mutual interests with her husband Steve who is an electrical engineer.  Over the years, despite my moving, we have kept in close contact.  I have been able to get to know Michael, their son, very well.  I am very proud of Michael and his progress. The Bress family attributes, to a major extent, Michael’s improvements to diet.   Given their day to day knowledge of the diet and their willingness to always help others, I asked Rénee to write a blog about their experience with the gluten/dairy free diet.

by Rénee Bress

I started researching the effects of diet on autism before my son was officially diagnosed. This was a time before studies demonstrating the effectiveness of dietary intervention on autistic symptoms had been widely published. The Internet was much younger then, and resources were very much scattered. The main source for information on treating autism was “anecdotal evidence” from other parents on internet mailing groups.

For all of the different therapies and treatments discussed, the one that was pretty much universally recommended was a change in diet – specifically a gluten and dairy free diet. This sounded important enough that I made an appointment with Kelly Dorfman, a nutritionist that specializes in helping kids with autism. She was quite busy and the appointment was a few months out.

Then came the diagnosis. We had suspected it was coming, but it still devastating to hear. After the Doctor said that my son had autism, we had some questions. Such as “How do we get him better?” In spite of the diagnosis coming from one of the US East coasts premier autism centers, the answer was “There is nothing that you can do.” My follow up was, “I had heard that some people were making their kids better with diet changes, do you think that might help?” And I quote: “If there was anything to diet and autism, we would be the ones doing the study!” (About a decade later, this organization built on studies by others and started making noise about diet changes, but that is a story for another day.)

Needless to say, we were not given much hope. In a time before the Internet, or even CompuServe, this might have been the end of the line for research into how to help my son. The online world allowed us to connect to other families with similar difficulties. And they had a lot more to say than “There is nothing that you can do!” In fact, there were so many things to learn about and try, it was overwhelming.  I developed my ‘rule of three’ – if I heard about the same treatment, therapy, or intervention from three different sources, I had to research it.  Over the last dozen years or so, this rule has guided many of our choices, mostly successfully.

After what seemed like forever, it was finally time to see the nutritionist. One of the things I wanted to discuss was this gluten free/dairy free diet I had been hearing about.  However, before we got to diet changes, she suggested that we have some blood and hair tests done to get a baseline as to where he currently was medically. It’s hard to believe that a nutritionist was the first professional to take our son and his issues seriously and look for medical solutions!

In fact, Kelly was the first person to give us hope.  She asked us to figure out which of Michael’s symptoms were our biggest concerns so we could prioritize things to try.  One thing that we went after early on was Michael’s visual stimming.  He would look at things out of his peripheral vision, rather than directly, and had almost no eye contact.  Kelly suggested that we try cod liver oil because of the high vitamin A content.  Within a few weeks, the visual stimming disappeared and we had an increase in eye contact.  That one success gave us the confidence we needed to try other, more difficult changes.

It wasn’t a great surprise that Kelly wanted us to try the Gluten Free/ Dairy Free (“GFCF”) diet. We weren’t quite ready. In fact, I was scared to death.  Michael’s favorite foods were milk and grilled cheese sandwiches. He was an incredibly picky eater, borderline underweight, and stubborn enough to refuse to eat if he didn’t like his meal. I was afraid he would starve if we tried to make drastic changes to his diet. As the tests came in, it was clear that he had an interesting assortment of vitamin and mineral deficiencies, which Kelly helped us to bring back to something a little more functional.

Since we weren’t quite ready to commit to the GFCF diet, we tried an intermediate step. Kelly suggested digestive enzymes from Houston Nutraceuticals that helped with the breakdown and digestion of gluten and dairy. We saw improvements fairly quickly. We later attended a lecture by Doctor Houston that explained the science behind both the diet, and the enzymes.  It all made sense, and matched what we were seeing with Michael.

Perhaps the biggest surprise from Dr. Houston’s lecture was why gluten and dairy affected so many of the kids. He described it as a symptom of a weak digestive system. If the gluten or casein isn’t properly broken down, some of the remaining molecules aren’t just harmless bits of milk or wheat, but are actually a version of morphine. So, our little milk addicted child was actually addicted to milk! This knowledge helped greatly as we changed his diet. Since we knew in advance that we might have a bit of a detox problem on our hands, we were ready for it. This also explained what Grandma was up to when she wanted a warm glass of milk before bed.

Whenever a well-meaning friend or relative questioned why we would give him enzymes whenever he ate certain foods, we used a pretty easily understood analogy having to do with hangovers. “If you are hungover, you aren’t ready to learn. If your head is pounding and the lights are bright, it doesn’t matter how many times someone yells at you to look them in the eye, you’re just not going to want to. If you can make the hangover go away, maybe learning and better interactions can happen.”

We did see some very good improvements with the digestive enzymes. The obvious advantage to using them was that we didn’t have to change the diet, yet. We did transition a bit from cow’s milk to goat milk, which was a little easier for him to digest. Then, one day, he got sick and had a fever. The doctor told us to stop giving him milk until he was better.  For the first time since his regression, he started putting words into tiny sentences.  We saw such improvements in him during that illness that we simply stopped giving him milk.

Transitioning off of gluten was a little more dramatic. The only way that we could figure out to do it was to go cold turkey. Since this was an experiment, we had to make sure that it was a valid experiment. That meant eliminating ALL sources of gluten, even accidental ones. We got rid of all of our old cookware and replaced it with shiny new, never been glutened stainless steel. We didn’t want to risk any chance of stray particles messing with the experiment. And I was thrilled to get rid of all the non- stick chemicals in what we had been using. (This would be considered slightly extreme these days, but there wasn’t as much known back then between Coeliac disease, to which particles matter, and gluten intolerance.) We also continued with the enzymes on the off chance that we missed some hidden gluten in his food.

Because those who react to dairy also tend to react to soy, we experimented with removing soy as well.  It turns out my husband is extremely reactive to soy and had long standing GI issue improve dramatically with this change.  We quickly found out that even small exposures to soy made Michael grumpy and aggressive.  Funny how that will teach you very quickly how to avoid it!

The results from removing gluten were slower, taking place over a few months, but fairly impressive.  Michael started talking in complete sentences and interacting with us more.  His receptive language improved.  Overall, he just seemed happier and more comfortable in his own skin.  One unexpected result was that he became much more willing to try new foods, and actually starting eating vegetables.  Before the diet, he was very picky about what he would eat, self-limiting to about a dozen foods.  As he adjusted to gluten/dairy free, he became more willing to try new foods and started eating a larger variety of foods.  He was still sensitive to textures and didn’t like mixed foods, but his diet was much more varied.  I still find it ironic that I waited to try the diet so long because I was afraid he would starve.

Even though we saw good results, I don’t want to make it seem like this was an easy change.  It was one of the hardest things we’ve ever done as a family.  In order to avoid cross contamination, and feeling like hypocrites, all of us went gluten free.  It took us a little longer, but eventually we all went dairy and soy free as well.  Michael was not the only one in the family to experience crankiness over the diet change.

The most important skill needed to follow this diet is the ability to read food labels.  Gluten is in so many things that you would never expect, like malt vinegar and imitation crab meat. The allergen warnings on products are very helpful, but it still important to read every ingredient.  There are many websites that will tell you all the different words to look for to avoid gluten, dairy, and soy in your foods.  My favorite resource is TACA’s diet page, under family resources.  It has tips and tricks as well as a ton of recipes that have all been designed with picky children in mind.

I also want to mention that it’s important to rely on real, whole foods as much as possible.  Just because junk food is gluten free/dairy free/soy free, doesn’t make it healthy.  There will always be room for small treats, but we always try to give Michael mostly meats, vegetables, and fruits.  The fewer ingredients a food has, the better.

At this point, we’ve been GFCFSF for over ten years.  It’s hard to believe it’s been so long, and harder to believe that I have a teenager.  While we have tried many different interventions with Michael, I have to say that changing his diet has been one of the most fundamental, and most effective.  It’s also probably the hardest. It’s easy to give a pill or take him to a therapist, but food is something we all need daily.

I also have to say that it makes me incredibly happy that at this point, Michael can articulate his food allergies and can advocate for himself.  If someone offers him a food, he will list off his allergies and explain that he can’t have anything containing those items.  He has taken an interest in cooking and baking and is now a teenager who will try almost anything.  He still has his favorite foods, and doesn’t really like mixed textures, but his diet is large, varied, and overall pretty healthy.  I couldn’t be more proud!