This is a Q&A from a Super Mum recently. I love her hard-hitting questions and I will try to do it justice. This is part of her long list of questions (which I am more than happy to reply, though I apologize for the slowness). Please see here for Part 1;

Question:
Dear Marissa,
Hi! A very informative blog but there are a few questions which I would appreciate it if you could respond to.

What made you choose the GFCF diet amongst the other diets? Can you not get the missing vitamins and minerals etc from natural foods such as calcium from anchovies (ikan bilis)? Which cookbooks did you get? or which GFCF recipe sites are the friendliest for picky eaters? Do you have a good organic chicken supplier in KL? May I please have the contact and a beef one (imported or otherwise), if you have one?

I wanted to know why you did not highlight the Body Ecology Diet. Was it because the allowed foods were too limiting for a child or did you find aspects of the natural cleansing too alarming? Did you consider it for your own children too? If not, why not? I am seriously considering this and am also looking for a coach or a practitioner in Malaysia. I have looked online but have yet to find one. Should you know of one, I would appreciate it if you could share his/her contact details.

When you say that your children have recovered, does this mean you do not practice the diet anymore?  or does that mean that you do it for short periods each year?  If so, for how long? Lastly, were your children placed in school when you did the diets?

I have been given quite a lot of running around and I just need some honest advice from someone who has been there and done that. The internet is really a giant chicken and egg situation and depending on who you seek advice from, you’re either at the start or really at the start of yet another dead end and unfortunately, time is something any parent in such a situation can ill afford.

Thank you
T, Super Mum to a child diagnosed with Autism, Malaysia

My reply;

Dear T,

Thank you for your queries. I can tell that you are extremely concerned for your child and is looking for the best options for him. Yes, the Internet can be overloaded with too much information. And we don’t know where to even begin to start. Firstly, please sign up to the KL Biomed Health Forum at http://health.groups.yahoo.com/group/klbiomed/. Here your questions can be answered by many Malaysian parents with vast experience rather than just from 1 source of information or opinion.

Why GFCF? Because it made sense to me. My daughter was extremely addicted to milk and bread. Based on what I read, the opiate effect and leaky gut reasoning was more than enough for me to try. You have to start somewhere, the GFCF is the most basic before we go a step further with Feingold, Body Ecology, SCD or any other dietary intervention.

So, start somewhere, it doesn’t have to be the most perfect diet for your child. You can evolve and refine from there. Also, consider practicality, time and your child’s eating habits. I can start the GFCF without any supervision and I don’t need to wait for a practitioner or specific books. I have never bought a GFCF cookbook or a dietary book but have been given some as gifts. But I don’t find them very useful. I can get all the recipes I want on the net, I can easily modify my girls existing diet by substituting with a gluten or casein free alternative rather than create a new dish which I know will be rejected.

Plus all the cookbooks are western foods, I am trying to stick to Asian food as much as possible, simply because I love it and it’s healthy. I believe that we should eat what our ancestors ate and consume food sources that are locally grown if possible. Less imported foods, more locally grown foods. It’s cheaper too.

Body Ecology Diet: I have read about it and listened to many conferences extolling the virtues of the Body Ecology Diet. However, there are many many diets to choose from. And this diet was lower down on my list of diets to try. For all it’s benefits, I had to balance benefit vs practicality. Above all else, I considered my children’s eating habits and how long it would take to implement it. Though we shouldn’t choose treatments because they are easy, sometimes we have to pick our battles carefully and put your effort where it will be most beneficial and with the least path of resistance first.

The diet incorporates cultured and fermented foods. And yes, it has benefitted many children and adults enormously. But there’s no way I can get my girls to eat or drink coconut kefir-they won’t even eat yoghurt unless if it’s super sweet and they don’t drink smoothies or milkshakes. Neither my husband nor I eat sauerkraut, so I can’t expect my girls to eat something that I myself won’t put in my mouth. Tempe is out of the question as they both tested high for soy intolerance. Though I love Miso soup, my girls do not eat soup. Ever.

Sorry, I don’t know of a dietician or nutritionist to consult regarding the Body Ecology Diet in Malaysia, not to say there isn’t one. However, Julie Matthews is the foremost nutritionist in the Autism world, please check out her site Www.nourishinghope.com. There is a lot of information there regarding many types of diets and how to choose the appropriate diet for your child.

GFCF Websites: there’s too many to list. I don’t have a particular favorite. But http://www.TACAnow.org is a good site to start.

Vitamins and minerals from food: ideally, we should get all our nutritional needs from the foods we consume. However, a couple of things to consider. The quality of our foods as well as our child’s underlying medical issues.

Firstly, many of our foods nowadays contain many kinds of pesticides, are genetically modified, cross-bred, fed with abnormal foods or uses chemical fertilizers, full of antibiotics and hormones. Some organic purists are very particular from which farms the produce are grown or bred. Even though the farmers follow the principles of organic farming, the land may not be ‘pure’, perhaps it was previously used to grow GM crops or pesticide laden from 3 years ago. The water used may not be truly clean and pure either. The nutritional value of a spinach now is probably less than a spinach grown 50 years ago. Ikan bills and seaweed is high in calcium yes. But how do we know whether the curing process is safe? Though I incorporate a lot of ikan bills in my cooking, I don’t rely on it solely as their source of calcium.

Ideally, our diet should include good fats for our Omega 3 sources. Fish such as sardines, tuna and salmon, avocado and olive oils are nutritionally dense foods providing us with essential fatty acids. Though I love roti sardin from the mamak stall and sardine sandwiches, I try to avoid canned food as much as possible especially for my children. Tuna and salmon are also known to have high concentration of methyl mercury. Pregnant women are advised to limit their fish intake after all. Not many kids like to eat avocado (though my eldest daughter surprisingly loves it) and it’s pretty expensive in Malaysia. Olive oil is great when cooking western food, but it cannot withstand the high heat required in many Asian cooking.Thus we give our children Omega 3 supplement daily. Btw I love the movie Food Inc, watch it if you can.

Secondly, our children have many gastrointestinal issues such as maldigestion and malabsorption. Though you feed them the best quality foods and impose a healthy nutritionally dense diet, malabsorption is a condition where they can’t absorb the nutrients. Maldigestion means that they can’t break down the foods into amino acids, some causes reflux, bloating, undigested foods still visible in the stools and many more.

We all excrete minerals, at varying rates. I know for a fact that my daughter excretes magnesium like crazy, whilst she excretes calcium and zinc slightly higher than the average child her age. Thus she needs additional magnesium compared to others. Our children need higher doses of vitamins and minerals from supplements that offers the best absorption rates. Not all vitamin C are equal, not all calcium are as easily absorbed as other forms of calcium.

Our children have high need for antioxidants due to their high oxidative stress and a breakdown in their detox pathways. For example, Vitamin C is an essential antioxidant, however it is water soluble. Some children may need regular doses of vitamin C throughout the day. Drinking orange juice in the morning gives a boost of Vitamin C. But the body will excrete it in urine soon after. Are we sure our chidren still gets vitamin C throughout the rest of the day? Unless you can make sure he eats antioxidant dense foods for lunch and dinner, for some children they require supplementing with vitamin C a few times in a day.

Organic chicken and beef supplier: I just buy from the organic range in Village Grocer in Bangsar Village 1 or from Country Farm Organics. There’s not a big range in Malaysia, so I don’t want to waste my time searching for the perfect organic chicken supplier. The best organic chicken in the world will not heal my child’s Autism. So in this instance, I just make do and I’m comfortable with it.

Though I do have friends who are very particular as to which brand of organic chicken they buy. Btw, they prefer DQ Organic chicken, though I find them very expensive. If I can afford it that week, I’ll buy that. Otherwise I’ll buy a cheaper one. Or make do without chicken and just buy cheap small local fish.

Recovery: though my daughter formally lost her diagnosis in June 2010, I would term it as managed recovery. She still needed the full compliment of dietary intervention and supplements. But no longer needing special education and has lost all Autistic features. But this year, I am focusing on full recovery if possible. We had done a trial run in December 2010 by relaxing the diet completely except for rice milk. But still on full list of supplements. They were fine. This past 4 months, they are no longer on the GFCF diets, however we do try to limit wheat and milk. After all, in my opinion an Asian person is not built to eat bread and cheese the entire day the entire week right? Plus, everyone should have a varied diet for health purposes.

Occasionally we choose to avoid gluten and casein for a few days, just to give their system a break. All our doctors advised us to continue with a strict GFCF diet, however my husband and I will see how long we can go on a varied diet. Perhaps in the future, we may find that the girls still need to the diet but that’s something we will deal with if and when it comes. Many parents of recovered children still maintain the strict dietary requirements, I admire them for their dedication. I am no domestic goddess but I make the best of it.

I still buy organic whenever possible. And I avoid as much as possible processed foods, sugary snacks, MSG and absolutely no caffeine or soft drinks.

This is after all sound parenting, it would be irresponsible for a parent to allow their children to eat candy, lollipops, cookies, ice cream and fast food all the time. It has nothing to do with Autism diets or controversial dietary restriction. This is good honest nutrition that any parent should abide by if they want to raise healthy kids regardless of whether they are developmentally delayed or neurotypical.

For the past 2 months, both girls no longer take supplements. Except for George’s Aloe in the morning and digestive enzymes whenever they consume gluten or casein. And we still keep doing the Epsom Salt baths. There were a few hiccups and issues along the way but so far so good, the girls are doing beautifully.

GFCF in school- when May was at centre-based ABA, we gave them a list of foods to avoid and what she is allowed to eat. We explained her food allergy and intolerance and the school was kind enough to accommodate our request. Most schools would or should respect the parents dietary wishes, after all there are vegetarian kids, kids who do not eat pork or beef for religious reasons, kids who have peanut allergy, egg allergy or lactose intolerant. If the school is not able to accommodate you, then pack their snacks or lunch and ask for the teachers’ cooperation to make sure your child doesn’t eat some other kid’s food.

When May was mainstreamed into Kindy, my husband and I made the executive decision to let her eat the same foods as the other kids. After all, by that time she had been on the diet for 2 years plus. We just made sure that she had digestive enzymes. We only requested that she can’t eat eggs or anything containing eggs. All 3 schools were fine with that.

T, no one can say for sure if diet and biomedical intervention will start you on the path of recovery. There is no right or wrong way, each child is unique. Your instincts will guide you. Your informed questions already shows which path you want to go. It is good to start taking action now, which you already are.

I hope this helps, I will reply to the other questions as soon as possible. May our children be the BEST that they can be.

Kind regards,
Marissa