My experience with GFCF (Gluten-free Casein-free diet)
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My son has very bad eczema. It last for months. It is so bad that 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, 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 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. 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.