Nowadays, many children I know seem to have allergies and my child with autism is not exempted. Is it because of processed food? Pollution? Chemicals in stuff that we use for our body? Could be – but I am not going to dwell on that. Let me just simply share our experience.
A few years ago, I found a second-hand copy of a book by Jenny Mc Carthy, “Louder Than Words: a Mother’s Journey in Healing Autism” in a local bookstore and learned about GFCF or gluten-free casein-free diet. There were plenty of information in Mc Carthy’s book that led me to read other sources and eventually, I found a biomedical doctor in the Philippines.
Here are some basic considerations before jumping on this diet:
Consult a biomedical doctor.
If you ask a developmental pediatrician or a general pediatrician, chances are, they would dismiss this ‘diet’ thing. Well, this was based on our experience at least. Some seem to think it’s just a fad that mothers go crazy about. But who want their children to have food allergies and intolerance anyway? Life is complicated enough without these. The truth is, these are health conditions that must be addressed and in certain instances, may have serious effects on the child, whether we like it or not. I found my son’s doctor through the internet in parents’ forums, where you can see parents giving feedback and comparing prices of supplements, etc. At that time, there were just a few. There are probably a lot now. Ask recommendations from parents whose children (with autism or without) are on GFCF diet.
While other mothers reportedly observe a dramatic change in their children’s behavior after doing the diet for a few months, I would say that is not the case for all. I cannot dismiss another mom’s experience as well because each autism case is different from that of another child. I can only speak for my son’s experience at this point. Based on my observation of my child who has been on diet for a few years, though there has been improvement on his behavior and speech, I personally believe that it can be attributed to a wholistic or combined effort: from therapy, from teaching and caring for him and from his diet that perhaps helps relieve whatever physical discomfort he may be experiencing. Even though I initially got excited with the idea of healing autism by simply changing his diet, my son’s doctor was quick enough to explain, even at the beginning, that the diet is not an instant magical cure and has varying results for each one. Helping a child with autism consists of efforts in various areas, not just mentally but also physically.
Have your child undergo a food allergy/intolerance test.
Before starting your child with a GFCF diet, it is very important that he undergoes food intolerance/allergies test to avoid a hit-and-miss solution. The doctor advised my son to change from cow’s milk to almond milk (the usual recommended non-dairy milk) though my son has not undergone the test yet. It was our fault because she advised us to immediately have him tested but due to financial concerns (the food allergy/ intolerance test, as well as the 2 other tests that must be taken, were expensive), we had to delay the test. It turned out he was highly allergic to almonds. After finally getting the results of the test, he was advised to take hazelnut milk or another non-dairy milk instead. Another miss, we also avoided eggs and peanuts, only to find out that he was not intolerant to these. I know of some parents whose children with autism are allergic to coconut so they cannot use coconut oil. So what is healthy for one person may not necessarily be healthy for the other. Yes, we trust our mother instincts and we usually are right, but we need a sound medical basis for getting our children to avoid certain food. From a personal standpoint, it is highly recommended to take the food intolerance/allergy test first before starting the diet.
Get into the habit of checking the labels.
Start by learning to read food labels all the time. My son’s doctor gave us a list of ingredients to avoid (oops, not just gluten and casein) and possible substitutes. At first, it can be a real headache having to check the ingredients of everything. And since some ingredients are gluten and casein in disguise, initially, I had to google ingredients while in the grocery. But you’ll get better at this as you go along. When uncertain, remember that the less the ingredients, the better.
Involve the whole family.
Starting on a GFCF diet is a complete change of lifestyle. It is hard to implement it without the cooperation of family members. I had to let go of my flavored junk food (with MSG, wheat and dairy), yes. I still crave for them but they are bad food anyway. I could still eat them on rare occasions but I did not need to include them in my cart when I do my grocery. From flour to condiments, changes have to be made. But once you get your pantry ready with everything you need, you can simply replenish once in a while. Since GFCF bread usually has a funky taste and has to be kept frozen (I haven’t mastered this yet but there are tons of online recipes to try), we have to allow wheat bread for those who are not on a diet, plus a few things like cheese spread and cheese (my daughter doesn’t like the smell of GFCF cheese). My son does not insist anymore if you tell him that that bread or food is not for him (but I must not leave it lying down on the table for him to devour – he might not be able to resist the temptation!) At first, we had separate meals for him and for us but eventually, it became quite tiring and stressful. We decided to prepare daily meals suitable for everyone. The good thing is, Filipino dishes can easily be converted to GFCF.
Be ready for an awful change in your budget.
It will be a bit hard on the budget at first. When my son was still consuming hazelnut milk, we had to buy around 10 cartons every 15 days and hazelnut milk in the Philippines is not cheap! If you buy raw hazelnuts to make your own hazelnut milk, they are still expensive so we opted then to just buy cartons of it. But when he eventually learned to eat more table food, adobo, afritada, tinola, fruits, etc. what a relief! Now, we would only buy milk once in a while as an ingredient for pancakes, muffins, etc. Yes, there is light at the end of the tunnel! As I have mentioned earlier, Filipino dishes, by nature are usually gluten-free and dairy-free. My son’s doctor said that the only thing we would have to change is how we cook our dishes: we have to go back to the basics – the olden times of not using ‘instant’ stuff. For instance, when we cook menudo and afritada, which are tomato-based dishes, we use pureed ripe tomatoes instead of a canned tomato paste or puree, since canned food is a big no-no. Besides, my son was also tested high in lead. We have a small-sized family. With just about 8 to 10 ripe tomatoes, we have enough for a chicken afritada for lunch and dinner. Throw in other ingredients like sea salt, brown sugar (optional), bell pepper, carrots and potatoes and you’re done. With sinigang, a favorite Filipino dish, we go back to using real tamarind again. I remember when my mom and I had to do that when I was still a kid. I have to admit, it was so much easier to just use one of those packed sinigang mixes! But one time, we did not expect our son to ask for sinigang (because he has low tolerance for sour food) and he did. Since then, we never used a sinigang mix anymore.
The good news is that things are changing fast. People are actually going back to the basics – organic food, etc. A few years ago, you will mostly find GFCF products only in Market Market and expensive health stores like Healthy Options. But recently, I have observed that more and more GFCF products are finding their way in the usual SM grocery stores. These products are also becoming more readily available online through Amores Gluten Free Foods and Gerald.ph. You can also find such food in local stores like Superfood Grocer and Human Nature, with products that are actually proudly Filipino-made. On special occasions, my children love Superfood Grocer’s gluten-free and non-dairy ice cream.
Get used to eating at home.
This seems incredibly frustrating, isn’t it? Especially if you have a family who loves to eat out. My family and I loved to eat out during weekends – and we would often enjoy pizza and pasta, obviously loaded with gluten and dairy. At first we would try to eat out, while my son got to eat his baon. There was a heart-breaking instance when my son didn’t want to eat his food. He used to eat in this particular restaurant until we began the diet so he could very well remember that he liked the food. Since then, we opted to eat at home. I mean, we could simply enforce that he eats his food – but for a mother, sometimes it is just sheer social torture. It is enough that he has autism and his social skills are different. Eating is a social activity. Having him experience that he is not allowed to eat something while his companions can is just terrible. Eventually, after some years, we learned to adjust by eating in a gluten-free restaurant (expensive!) on really rare special occasions or finding restaurants with grilled food, fruit smoothie, home-style potatoes and requesting for some adjustments from the waiters. As of now, it is still easier, better and cheaper to eat at home. Besides, it provides a family bonding experience for us, free from distractions. My husband and I just keep and keep on trying different recipes in the internet, tweaking them a bit when an ingredient is not available and according to our tastes. Still, I hope there will come a time when more Filipino restaurants would offer affordable, healthy and gluten-free and casein-free food options in their menu, like in the States, not just for children with allergies and intolerance but also for adults, so that people with such medical condition do not need to feel deprived when eating out.
Is this post all about bad news? I hope I did not discourage you at all. Bottomline is helping your child with autism entails good-old-fashioned hard work and sacrifice in various aspects. It involves adjustments, changes, a lot of patience, endurance and love. One day, these will all be over. As we are already in the journey, we can choose to immerse in it and deal with it or mope in the corner and complain that we are in a terrible fate.
By all means, let us continue learning about how we can help our child. With God in our midst, how can anyone give up?
To God be the glory!