We have had a major breakthrough with my nine-year-old daughter. Over a year ago we did the elimination diet for her and worked out what her intolerances were - severe for dairy, moderate to severe for salicylates, mild for amines and reacted to all the additives. I wrote to you some time back noting that my daughter who had finally started drinking soy milk (in fact she was guzzling it down), was bed wetting again and old behaviours were returning. You asked if she was OK with soy.
So we removed soy (or so we thought) and the bedwetting stopped, unless she consumed anything with soy flour in it. For the next year we lived with a much improved daughter but it niggled at me that she still didn't seem 100 per cent and I thought she could be better. When we eliminated gluten and wheat she always had good days but I couldn't bring myself to take these from her already restricted diet and she found this very hard to cope with. She also continued to suffer from eczema behind the knees and in creases, but nothing extreme. I saw the dietitian, thinking that maybe I had re-introduced salicylates too much too soon, but when she had her baddays, going back to failsafe did not always resolve the issue. The dietitian was great and gave me some RPAH booklets and some good advice about nutrition, but I knew I was missing something.
So I trawled the internet, did hours of research, contacted scientists and then went and saw my GP for a referral to an immunologist, hoping that maybe there was a detectable food allergy of some sort - how nice and straightforward that would have been! Of course nothing showed up in a skin prick test, but the immunologist was a full bottle on the intolerance issue and at least didn't think I was a complete nutter. He said that I could wear myself out trying to look for more intolerances but that I should be grateful we had achieved this level of success for her - no-one was perfect after all and I should appreciate how she was now.
It has only been because we are now trying to figure out my three-year-old daughter's eczema that we have finally put together the last piece in my nine-year-old’s jigsaw. She had had a particularly bad couple of days: instructions in one ear and out the other, deliberately annoying, disobedient, room like a tip etc and I was re-exploring the fed up website looking for clues about eczema when I came across the story "13 years of soy intolerance" (story 314 from April 2004), which I had read before. That writer mentioned that he avoided Soy Lecithin 322, emulsifiers 476, 471, 492 and vegetable gums from soy and other beans (410, 412, 415, 416, 461) as well as chick peas and tofu, because many soy intolerant people have cross reactivity issues with soy derivatives and other legumes. Of course! I rushed to my cupboards and discovered that for the past year and a half I have been feeding her these things on a daily basis: 471 was in her Arnott's plain water crackers, the Canola puff pastry and the Baker's delight plain white iced finger buns and also in the brand of rice milk I was currently buying (Freedom Foods) because the Vitasoy rice milk was out of stock. In effect over the past week we had done an unintentional soy challenge because I had made chickpea dip from the Friendly Foods cook book, which she was practically drinking she loved it so much, my "Granny's Beef and Bean Soup", which contained chickpea and mung bean sprouts, lentils, kidney beans and butter beans, plus mince in pastry for dinner. Hallelujah! Because her intolerance to soy is mild, it took doses on a daily basis to cause problems and they were low level, unlike the obvious ones when she drank bucketloads of soy milk.
I wonder if other people have similar issues with soy that they are not yet aware of? The tricky thing is that even a mild intolerance will be an issue because these other things are in products typically consumed on a daily basis. Perhaps you could post something on the site in case they might want to explore this a bit more. For a long time I have felt, that I knew the diet was working but she wasn't as good as she could be. Could you find a way to thank the person who wrote story 314 who chose to share this information for the benefit of others? My daughter has always seemed a little upset that even though she was sticking to food that was Ok for her she was still having occasional bad days and getting in trouble at school, though nowhere near the scale of how she used to be. This information will be truly life altering for her (and us!) and I'd like him to know that his kindness in wanting to help others has made a difference in our lives, just as yours has Sue. – Cherie, WA [note that Nuttelex Original and Lite are free from soy – the 471 is derived from vegetable oil and the lecithin 322 is derived from sunflower oil]