[314] 13 years of intolerance to soy (April 2004)

I am soy intolerant. More specifically I suffer from a legume intolerance which is only now apparent after 13 years of suffering and frustration. My intolerance manifests itself in the form of chronic idiopathic urticaria, meaning never-ending hives of unknown origin. 'These hives are large unbelievably itchy red welts that, in a severe attack can cover almost all of the body. My symptoms got worst and extended to lethargy, aching and swelled joints, sleepless nights and eventually an emotional feeling of hopelessness of ever being able to stop the relentless onslaught.

As many people discover when suffering from a health condition, not a lot of other people know much about it and the medical profession (as good as they are) can only help to a point.

My story began when I was 30 years old and developed a few welts for no apparent reason since I was otherwise healthy. I went to well-known allergy experts and my GP. It was obvious to them that I was suffering a food sensitivity. After I failed a skin test for allergic reactions, they focused on a food intolerance type problem.

I undertook a series of elimination diets starting with a GP 'allergy expert' in order to eliminate the obvious and common culprits. Soy was one such test whereby I had to stop consuming dairy products and 'overdose' on soy milk. No change! And so was the result for every other test. Each common food type was evaluated and the end result was no change.

After a year or two, I was referred to a local leading immunologist (a very nice and knowledgeable man) as no clear cause was becoming evident and the symptoms were worsening. I saw a dietician and with both their help proceeded on the RPA chemical sensitivity elimination diet in order to determine if salicylates or glutamates etc were a problem for me. After months of that there was no change.

Years went by of chopping and changing, trying different things and variations to elimination diets, even getting down to decaf coffee, toast and margarine for breakfast, salad for lunch and fish and steamed vegies or salads with dressings for tea with a packet of twisties or chocolate treat.

I still had no significant change over 5 to 6 weeks. My wife was at her wits end also having to shop for special food and cook different meals. I worked shift work. One thing did stick out - soy sauce caused me an immediate affect. Clearly I shouldn't have soy, but what else was causing the reactions? After all I only had soy sauce with a very occasional Chinese meal or rice.

In the end there was nothing the immunologist could do but maintain my antihistamine intake, and put me on cyclosporine, used in transplant patents, a drug which I could not take for long with bad side effects. Its purpose was to suppress the immunological system and 'shock' it into performing normally. This did not work. I had ultrasounds and blood tests - with no clear result. Everything seemed normal, yet the symptoms persisted.

I utterly refused to accept that I could not stop this thing from happening to me. After eliminating so many food types, the cause of my intolerance had to come from something I was in contact with every day. I even started considering the possibility of 'environmental sensitivity'.

The most important aspect of identifying my problem was keeping a record of what I ate every day for years. Eventually, when the breakthrough came, it was due to improved food labelling on Australian packaging combined with information about food ingredients.

One afternoon, one of my kids left an empty Cheezels packet on the bench in the kitchen. I picked it up to dispose of it and, as I'd been doing habitually for years, read the food ingredients label. To my utter surprise and confusion, it said 'contains milk, dairy and soy products'. I always liked twisties and cheezels, but never read anything in the past that alerted me to soy products within the ingredients. I closely read the ingredients list. No mention of soy. That's odd, I thought.

I then recalled being tested for soy with the 'overdose' of soy milk routine. It didn't make sense. I then went to an article about soy labelling and there it was, 'May be described as lecithin, vegetable gum, vegetable protein, textured vegetable protein or vegetable starch'.

I referred back to the Cheezel labelling and there it was: 'vegetable gum'. I then went to the West Australian Health Department's 'Food Additives Guide'. I looked through and found all the numbers relative to these titles, particularly lecithin (322) used as an antioxidant in many foods and checked out my pantry and fridge. More than half the food I had contained at least one of these soy based ingredients, but not one made mention or reference to them being a derivative of soy.

I stopped eating anything that contained ANY soy based ingredients and within 24 hours there was a major change!

I awoke the next morning to find only 3 small welts on my body and after 13 years, no need for any medication. I could not believe it. I thought I'd made a mistake or it was just luck that I didn't have the welts. I was almost in a state of denial that it was really happening.

I persisted with the elimination of these ingredients and over the following few weeks, lost almost all symptoms. No more lethargy, swollen joints or rashes caused from excessive histamine flowing through my body and virtually no welts.

The more I read labelling, the more products I found containing soy derivatives not called 'soy'. Ingredients that I had read before but never realised were actually soy. For example, regular manufactured bread and margarine with nothing else was filling me with soy and I didn't know it. The bread contained 'soy flour' which in previous years was labelled simply 'contains flour' (which I assumed was wheat flour) and the margarine contained lecithin 322.

I love chocolate. ALL chocolate contains lecithin 322 made from soy.

So there you have it. What doctors thought was a dairy problem was a soy problem. What they thought was a 'chemical' problem was a soy problem and so it went on. All because soy is not called soy on the food labelling of most products.

That situation is improving and I intend to help make that happen. Even when I speak to doctors and dieticians, not to mention workmates, friends and family, no one ever knows that soy is in so much of their diet.

There was a period where 'experts' would tell me I needed to exercise more, or stop stressing or don't work in an office. That advice made a bad situation worse. I did find some relief in researching alternative medicine options and have continued to adhere to some of those findings. At one stage they helped me to focus on the task at hand, providing relief from the worry of 'unending sufferance' and helping to clear my mind. To this day I use a particular liquid soap, aluminium free deodorant and do not apply sprays or scents to my body.

I am aware of the extension of my intolerance to other legumes. I still suffer every 5 days roughly from a few welts or itch, but nothing compared to what I used to get.

It is now easier to identify a 'bean' (legume) type reaction. I've stopped eating beans (obviously), peas, anything with vanilla in it and coffee. Not because of the caffeine, but because it's a bean! Snack foods (all types), all biscuits except pure shortbread (Walker's Glengarry plain), all chocolates and confectionery (except for barley sugar lollies - most brands) are off limits because they contain a soy based additive in them.

As well as 322 (antioxidant) I also avoid additives 476,471,492 (emulsifiers), vegetable gums 410,412,415,416,461 (not all soy but derivatives of various beans), vegetable gums & vegetable protein, TVP (textured vegetable protein) and vegetable starch (even if they do not specifically state soy, I don't take the chance). Soya beans, soya meal, soy flour (very common in breads and cakes), soya sauce, miso, tofu and chickpeas. In fact quite a lot of 'health foods' are grossly unhealthy for me. Packaged health foods early always contain a soy additive.

These other legumes give me a small reaction but soy brings out the worst reaction of all. It may be immediate, it may take 4 hours or it may take 24 hours, depends on what type of soy product it was or how much of it I consumed. I can go up to 10 days easy now without any medication and if I do get a slight reaction after that time, one antihistamine will fix it - and fast.

No, I'm not 100% cured but around 90% cured. I am managing a good 'normal' quality of life, not taking medications and continually improving through self-control and discipline of my dietary intake.

I am happy to provide alternatives that I have found that allow me a 'normal' eating habit and has no affect on the rest of the family. I strongly suggest to anyone who, like me is at a complete loss to identify the cause of their intolerance and suffers from long term 'idiopathic urticaria' to simply look for these ingredients in their shopping and STOP consuming them. Like me it could be the hidden soy components in the various food types that are causing you grief. You'll know within a very short period of time (48 hours I would suggest) if soy is a major culprit that's causing you your poor health.

I recommend alternatives like soyfree bread mixes (some pita and Lebanese breads have only wheat flour), use butter instead of margarine etc. Fresh meats, veges, fruit, salads and cheeses are OK. Check the labels. Jams and some spreads are OK. 'Cafe 26' salad dressing made in Perth is the only dressing I have found without soy additive. Soon I aim to research spices that may be of a legume origin. On goes the quest. I hope this recollection of events may help someone else find relief. - Wayne, WA