All About Autism

[cnimed]

[Editor's note: Topic selected & edited for http://www.kiasuparents.com/kiasu/content/my-experience-gfcf-gluten-free-casein-free-diet.]

WaWa:

yes i have since put my son on GFCF.. but, not 100% lah... maybe only 70% ... the major milestone i did to his diet was being able to switch his cow's milk to rice milk completely ... that's 50% liao I have also removed fish from his diet... these days he eats rice / bee hoon / kway teow with broccoli /french beans or spinach as veg... meat is pork ... and only pork ... i seldom give him chicken (i do but seldom).

Very occasionally , i still give him some bread(i know this is no no but no choice la.. anyway it is occasional.. ) And occasionally some birthday cakes too (just a small slice) ..

Hi Wawa,
I'm no expert in autism, but I wld like to share with you my experience with GFCF. My son has very bad eczema - the last for months, scream/cry all night, cannot shower, infected wounds type. We saw many doctors but it keeps coming back, and each round was worse than before. In the end, I did a GFCF (plus many other food-F) diet for him.

I now spend a lot of time reading up on allergies and on allergy forums, and there are mothers who are doing GFCF diet for their austistic/hyperactive etc children. The thing I've found out - cannot do half-way, you must go all the way to see results. If the child reacts to it, it's basically a nervous system reaction, so every bit counts. (for my son it's an immune system reaction).

My other son had also been to a psychologist for other stuff, and she mentioned that some of the parents of her autistic patients do see a difference with diet.

I made a lot of mistakes in the beginning, and I gave up many times, as well as cheated many times. :oops: It's really SO SO hard to do the diet 100%. But his skin was really looking bad, so bad as if the wounds are rotting. I told myself I MUST give it a 110% go and set myself a 1-month target. The things I found out:

1. No gluten doesn't just mean no bread/pasta/noodle. Gluten is also found in rye, barley, and possibly oats (due to contamination). (So cannot boil barley water to drink, no holicks, no oatmeal).

2. You MUST read all labels. When you do, you realise it also mean no SOYA SAUCE, no Oyster sauce, no Pasta sauce, no instant mashed potatos, no fried chicken with batter, even some potato crisps/sunflowers etc may have wheat flour as part of the seasoning. It's also used in some sweets and gums.

3. ...Which means no hawker food unless you are very sure they don't use the sauces (which will usually have preservatives and colorings that can also affect the neurosystem).

4. You must check and double check. Some traditional rice-based products have wheat flour added in to improve the texture and consistency of the products. E.g. some brands of rice noodles, dumpling skins etc.

5. For casein, it's found in a lot of products, not just milk. Again check labels, even if you don't think it's possible. Sweets and lollipops sometimes have milk. Cakes and breads definitely have milk. Many biscuits have milk. Western sauces as well. Ice cream definitely no-no.

6. EVERYONE in the family must cooperate!! We don't put temptations in front of my son, I do the diet with him. My elder son knows what the food didi cannot take and will be vigilant. Even the small kid knows and will tell others that he cannot take certain food.

In my son's case, staying off all the top allergens finally produced results within the month. It is a lot of work, but I'm just so relieved that his skin is finally healing. Whenever we eat out, I can see the consequences on his skin and sleep. Now, I cook everything and take it out for him if we have to be out of the house for a few hours, or go visiting. My elder one recently had to go for a few assessments, each lasting a few hours, I woke up early to cook, and bring all the food and snacks along for the younger one. Die die must do leh!

Now that he's so much better, I started doing GFCF/soya/egg-free baking for him. We also give him sorbet treats. I often get people saying \"poor thing, so many things cannot eat\", but all I have to do is to look at the photo of his old wounds (I kept it in my hp as a stick for myself) and I definitely do NOT feel sorry for him.

[hquek]

deminc:

I'm no expert in autism, but I wld like to share with you my experience with GFCF.

hi deminc,

Chanced upon this thread and read through your experience. I vote you \"Parent of The Year\"! :salute: :salute::salute:

Very very impressed by your efforts. Jia you!!

I think your son is very blessed to have such a wonderful family behind him.

[schweppes]

Hi deminc


Thanks for your sharing.

I applaud your efforts in ensuring a GFCF diet for your child. I tried to do that for dd1 when she was younger but found it expensive and a challenge to do so. I was working FT and had no maid to help out. (actually, still have no maid now) When younger, my kids went to childcare and I cd not rely on my mother to cook a GFCF diet for my children. So, it was difficult and tiring to sustain the diet throughout

In the end, I did what I could. It was half-hearted effort.

Recently, I was introduced to Enzyme Therapy last year and currently my dd1, is on it. I find it useful as the enzymes helped to break down the foods that the children eat to make it easily absorbed into the body.

If you want to know more about Enzyme Therapy, I recommend the books written by Karen DeFelice. She wrote:

1. Enzymes: Go with your gut (more practical guidelines for digestive enzymes)

2. Enzymes for Autism and other Neurological Conditions

I bought the books at Kinokuniya.

Is Enzymes Therapy expensive? I think it depends on what and how much supplements one buys. Then again, nothing is cheap. But I see it as another form of intervention and if it helps my children, then I will do what I can within my means to help my children get better and healthier.

Ever since dd1 is on enzymes, I noticed that she is more in control of her emotions. It could be that she is older now and so a little more matured, but I also believe the enzymes supplements helped in balancing her neurological conditions as well.

JMHO :celebrate:

[Blobbi]

Hi Schweppes,


Tks so much for all the info. Tks to your good rec, we've started DS on enzymes as well, although I I haven't delved into exactly what else to do yet. THis is all so exhausting, and I wish KSparents has one giant thread called LD or something. Saves us from thread hopping :).

I was thinking - since the kids are wired such, something else we can do is to look at their learning styles. This is mentioned in the Mislabeled Child book but I'm not sure where to start except that kiddo is visual spatial. One recent thing I picked up which could be interesting to ask your kids is - which of the senses do they enjoy most, and which are they irritated by the most. Predictably, mine said eyes and ears respectively, which may be troublesome because despite learning best with his eyes, he has had/may still have visual issues. Are your kids similar?

And Deminc, can you share GFCF cookbooks? DS' rash comes and goes with eating wheat based products. But he absolutely refuses to take enzymes to digest the gluten, so we're kind of stuck.

[schweppes]

Yes, I have looked into learning styles as well. Nothing rigorous, nor did I send her for any formal training on this. What I do is very simple and I rely on instincts and books to guide me. For example, dd1 is a visual person, so I give her coloured pens and highlighters to write her notes or highlight key words/ phrases.


For those strong in visual learning, one can use mind maps, but somehow, that didn’t quite appeal to her. But lists or writing down main ideas seem to work for her. One size doesn’t fit all, so need to find out what best appeals or work for our child.

I borrow books on drawing and expose her to visual arts. This seems to spark an interest in art. Whilst she may not be artistically talented, at least her interest is there and drawing becomes an outlet for her to release stress.

Guess, I’m learning and experimenting all the time.

[schweppes]

Blobbi:

But he absolutely refuses to take enzymes to digest the gluten, so we're kind of stuck.

Just wondering if u can tell ds that he is taking vitamins to make him strong and healthy? Poor dd has to take a multitude of tablets/ capsules daily but we explain why she has to take them. Thankfully, no resistance from her.

[Blobbi]

schweppes:

Blobbi:

But he absolutely refuses to take enzymes to digest the gluten, so we're kind of stuck.

Just wondering if u can tell ds that he is taking vitamins to make him strong and healthy? Poor dd has to take a multitude of tablets/ capsules daily but we explain why she has to take them. Thankfully, no resistance from her.

Nothing helps, Schweppes :(. He has a multitude of sensory issues - can't swallow, can't stand certain textures ... Very long list.

[cnimed]

hquek,

thanks for the encouragement, but truly, you think I\"m doing a lot only because you didn't see just how bad his skin was. When we went to the playground, even the other (small) children asked about it. Some even asked if he had hand foot mouth disease. At the food court, strangers would be pointing at his legs and whispering. Even the pharmacist at Guardian told me I'd better take him to a doctor - and he had already been to three by then! The worst was when nothing worked. He had diarrhea, he was skinny, couldn't put on weight, couldn't sleep, every night as he scratched I could smell the blood, and the doctors had nothing to offer. Now at least there's improvement and a plan that works. All I feel is great relief.

Shweppes,
enzyme treatment is new to me! I will check it out, thanks!

Blobbi,
actually our common acquaintance A told me whole food is the best - you can see and be sure what goes in. That was one of the best advice I got. All the GF mixes on the shelves contain too many ingredients, it makes allergy tracking very difficult. Besides there is the risk of cross contamination and many products taste terrible.

HOWEVER, I recently found a great GF baking book that was highly recommended by someone whose family has been GF for many years. The title is Flying Apron's Gluten-free & Vegan Baking Book.
The recipes don't rely on GF flour mixes from the shelves, and they don't use soya, which we are also avoiding. The author used to run a successful bakery so these are tried and tested recipes. I baked with ds2 yesterday afternoon and he was so busy licking the mixing bowl. :love: You can get the flours from selected Cold Storage outlets. Happy baking!


Alamak, I think I have totally OT from the thread title. So sorry! Will zip out now.

[schweppes]

Blobbi:

Nothing helps, Schweppes :(. He has a multitude of sensory issues - can't swallow, can't stand certain textures ... Very long list.

Oh dear... poor boy. What about taking them in liquid form instead? Maybe that will help. :xedfingers:

Thinking aloud, sometimes, I think there's a time and place to the number of intervention or therapies the child (and even parent) has to go thru. The body has its limits and we are also constrained by resources as well.

Guess, do what you have to do now, and when your ds is more ready, then perhaps, that is the time his body is ready to accept enzymes therapy. dd1 only started on enzymes when she was 12.

Hope I'm making sense. Sori, if my reasoning sounds confusing. Just don't fret too much. Believe that there is a time and place for everything. And when the right time comes, hopefully, everything will fall into place.

:hugs:

[schweppes]

deminc:

Shweppes,
enzyme treatment is new to me! I will check it out, thanks!

Alamak, I think I have totally OT from the thread title. So sorry! Will zip out now.

Hi deminc
Sent u a PM :lol:

Btw, not off topic lah as diet intervention is very relevant to the thread title as well

:celebrate: