After the conference, I met up with my family in Nelson to stay a few days at my sister's holiday home. We had dinner one night with a doctor friend, and I asked him what psoriasis looked like. He explained, and I eliminated that as a possibility. He thought it looked more like I had contact dermatitis. Still nothing seemed to help. While we were away, I noticed that my skin improved for a few days, and then suddenly flared up one day. After thinking about it, I realised I had eaten tomatoes for the first time in a while. Hmmm....maybe tomatoes are my issue. After eliminating tomatoes, my skin improved a lot, but not completely, and then flared badly again after I ate an orange. So I began thinking, maybe acidic foods and/or citric acid. The one thing I did know for sure now - foods had SOMETHING to do with my symptoms. I was also suffering a bad dose of insomnia.
After returning home, I continued to try and figure out what the trigger was. I had never heard of elimination diets, or the Failsafe diet, but I figured that if I could get to where I was eating only foods that DIDN'T cause a problem, I could then try one food at a time and figure out what WAS the problem. So I tried to eat the most plain foods I could think of. I got to where I was eating pears and bananas for breakfast, rice and eggs for lunch, and kumara for dinner. And I was still reacting.
Meanwhile, our church had new pastors. The wife had massive food allergies to something called salicylates, which I had never heard of. All I knew was that if we had them over for dinner, we didn't have any spices, tomatoes, broccoli, apples and most other fruit, and more besides, but I didn't really understand the details. She was so allergic, that walking past a window where someone was cooking a curry could send her into anaphylaxis. She carried an epi-pen with her. Now I was struggling with food issues, she was teasing me..."maybe you're allergic to salicylates too!" No way! There was no way I was going to be allergic to all those foods she couldn't eat!
Well, to cut a long story short, it turns out it WAS salicylates I was reacting to! (Kumara is moderate in salicylates). Salicylates are part of plants' immune defence systems, and they occur to varying degrees in foods that come from plants - nuts, seeds, herbs, spices, fruits, veges etc. Asprin is pure salicylate. The interesting thing is that as a teen I had never been able to tolerate asprin or disprin - it made me very nauseous.
So then, why hadn't I ever known I had a salicylate intolerance? Why didn't it manifest itself until I was 39 years old? What triggered it to flare up now? In hindsight, I think I had had an intolerance to salicylates all along, but was unaware of it until it got so bad my face looked terrible, and that motivated me to figure out the issue. Over the years since my childhood I had suffered from various things that could potentially have been linked to salicylate intolerance - unexplained abdominal pain, reoccurring tonsillitis and throat infections, frequent thrush infections, headaches, PMS, chronic insomnia, a couple of bouts of depression, the "seasonal eczema", "brain fog," low blood pressure, feeling the cold, and a few other things, then finally this bad rash and itchy dry skin.
In 2009, what causes the real flare up was the herbal liver cleanse and weight loss program I went on - in 6 months I lost 22 kg, but the food I was eating, and especially the herbal cleanse, was extremely high in salicylates. Effectively my body threw up it's hands and said "I can't cope anymore!" It reached complete overload point.
As is common with a food intolerance, at the point when it really manifests itself and one figures out the problem, one is usually HYPER-sensitive - the slightest exposure causes very strong reactions. This is even more so when one first eliminates the problem foods - the reactions are even more obvious. The good news is, though, that after a prolonged period of time with no exposure to the problem food, and proper support of the body's gut and immune system, the body can heal itself and become able to tolerate the problem foods. This can take 1 - 5 years or more though, depending on the individual. At this point, I was so sensitive that if I even touched a plant, I would break out in a rash all over my body. The gardening I'd started and had high hopes for was out the window!
Elimination Diet - The Whole Family
So, around New Year 2010, our family went on the Elimination Diet. The first 4 weeks were designed to be very low in salicylates, amines and glutamates, and completely free of all additives. At that time we had no reason to suspect issues with lactose or gluten, so didn't exclude those. The most immediately noticeable effect was on my children's mood and behaviour....
They were, in general, good kids, but there were days they would drive me NUTS. There were often fights over nothing in particular, or days when everyone was just plain LOUD. A couple of them were rather hyperactive, others had very little tolerance for the ones who were being "annoying" and so on. Some days I would have to repeat myself a LOT. In other words, they were pretty normal kids, or so I thought....until we went Failsafe.
A week or so later I got up one morning to find all the kids sitting quietly around the dining table, colouring in pages for a colouring competition from the newspaper. What was so unusual about this was:
* Everyone was quiet and co-operative
* No-one was fighting over who got the original picture and who got photocopies
* No-one had fought over who did the photocopying
* They were happily sharing the pencils and felts - asking and passing and sharing.
I felt like saying Who are you, and what have you done with my children??
Four mostly pleasant weeks later, I told the kids we were now going to reintroduce one food group at a time, starting with salicylates - after all, if I were the only one with a sensitivity, I didn't want to be limiting the fruits and veges my kids ate. My eldest, the one who had rolled his eyes, objected: "But Mum, I don't want to go back to eating how we were!" Why not, son? "Because, for as long as I can remember, I have felt angry for no real reason. And I felt bad about that, so I've been kind of depressed too. Until we started this diet - and now I feel GREAT! I don't want to go back to being angry and depressed!"
WOW! Well, I certainly didn't want him to go back to that either, but we needed to figure out the trigger.
So I reintroduced fruits and veges that are moderate to high in salicylates, but low in amines and glutamates. It turned out that children numbers 3&4 had a moderate sensitivity to salicylates - manifesting as eczema and mood swings. One of them, my other son, would go through two distinct mood stages if he consumed salicylates - first he would become "happy hyper"- he would be the life of the party, telling stories, making everyone laugh, clowning around and talking at 100 miles per hour. Hours later, or the next morning, he would be the grumpiest bear you ever met - practically growling at everyone who spoke to him, uncooperative in the extreme, unable to concentrate on anything or learn at all. And he got bad eczema in the bends of his elbows and behind his knees. #4 just became moody and intolerant of her siblings.
Meanwhile, my eldest son made the mistake of thinking "eating fruit and veges" meant it was ok to buy and drink a blackcurrant drink from the dairy. Within a few minutes he felt like he had "steam coming out of his ears" and was ragingly angry! We identified it as a reaction to food colouring.
During the process of doing the elimination diet and then reintroducing foods, we discovered:
* Two of the kids reacted to excessive salicylates
* My eldest daughter showed some sensitivity to amines and glutamates, particularly in certain foods such as cheese and chocolate which made her feel like very angry towards her siblings, and completely unable to sleep.
* My husband and four of my kids reacted strongly to food colouring and some additives.
So we changed our food lifestyle to one where we ate few additives of any kind, and were aware of and made allowances for the other sensitivities. If someone ate something they shouldn't, it was usually pretty obvious from their mood or behaviour! We weren't totally strict, especially as the years went by, but understanding and awareness was very helpful!
Getting my thyroid levels under control removed a bunch more symptoms from the list (including frequent illness, and almost instant infection in any wounds, even surgical ones, of which I had a number over time). But the most concerning was that I was suffering peripheral neuropathy - strange tingling in my legs and sometimes arms, and sometimes a sudden and complete loss of sensation. Very disconcerting when one is walking across a car park and suddenly can't feel your legs! The doctor began to suspect I had M.S, and sent me for a bunch more tests, which didn't show anything.
Meanwhile, my facial rashes were starting to come back, despite the fact I was being careful to avoid excessive salicylates. A few months earlier, I had read a book called "Why do I still have thyroid symptoms when my test results are normal?" in which the author (a doctor) says that the majority of Hashimoto's patients are gluten intolerant, and it causes them problems, and that he recommends all Hashimoto's patients go gluten free. At the time I had shrugged and decided I was glad I didn't have to worry about gluten, as avoiding salicylates was enough. Now, after trying various other things, I began to wonder if my rashes were gluten related.
Easy enough to check - I went gluten free for a week, and the rash vanished. Then I ate bread and pasta on the same day, and the rash was back with a vengeance! Hmmmm. So, I went completely gluten-free for a year, and felt much better. The neuropathy completely disappeared, as did most of my remaining symptoms. After that, I tried out organic home-ground wheat and seemed to tolerate it, so added that to my diet. Then life happened, I got lazy, and wheat in general slowly snuck back into my diet. When I was gluten free, I was also free of the IBS-like problems I had had whenever I ate anything high in dairy fat, especially heated or melted butter or cheese. Also, while I was gluten free, my ability to tolerate salicylates improved dramatically, and I was able to eat an almost normal (but gluten free) diet.
The reactions continued, and it took us three weeks to figure out the cause. Meanwhile, another doctor had prescribed prednisone, which helped a bit but knocked her out, and tested for herpes simplex (negative). Finally Sam realised the reactions had started at the same time as the orthodontist added elastic bands to her braces. So she took them out - reaction gone. A few days later, she put them back, and the reaction returned. We initially thought it might be the latex in the bands, so tried non-latex bands, but had the same results. Finally we identified the problem as the cornstarch which is used on the bands to stop them sticking together in the packet. After trying various sources, the orthodontist couldn't get any corn-free ones, so she completed her orthodontic treatment without bands (they just help speed it up).
From this point on, she also reacted strongly to anything remotely connected to corn, and I had to become a food detective and learn more than I ever wanted to know about food production! I spent hours researching, and making phone calls and so on. I learned that citric acid (330, a common stabiliser or preservative in so many foods, but considered ok on the Failsafe diet) is manufactured from the by-products of animal feed in China, which may include corn.
Meanwhile, it rapidly became obvious it was not just corn she was reacting to, but amines and glutamates in general, just much more severely than she ever had before. I learned that the processors of chicken soak them in a bleach solution (she's sensitive to bleach; chlorine forms an amine compound), and that the aging of any meat rapidly increases it's amine levels (which ruled out nearly all red meat sold at the supermarkets in the lower North Island, as they are all "age tender" meaning at least three weeks old before they even go to the store for packaging and sale). I also learned that MSG is hidden in many forms in foods. And so on.
A carefully low amine and glutamate diet eliminated the reactions. But, like me, Sam had other things that just weren't "quite right." She seemed rather run down, and her usually robust immune system crashed - she became sick easily and took a long time to get better. She had also been working part time in a Chinese takeaway for several years. Finally I told her that if we were to get her well, she needed to not be constantly exposed to her allergens, and she would need to quit her job, which she did.
Meanwhile, I had the doctor run some check-up tests on her - including thyroid and iron counts. She was 16 years old at the time. Her iron came back a bit high, and her thyroid a "bit off" so they re-ran those tests 3 months later. The iron was still high, but not as high, so the doctors decided no further action was required. About then, we "just happened" to spend the night with her Learning Advisor in Wellington, and I got talking to her and her husband about food intolerances, and then the subject of Sam's iron levels came up. The husband pointed out that I had not been given all the information about her iron levels (I had written the results I was given over the phone in my diary and only had 3 of the 5 numbers), and that Sam should be gene tested for Hereditary Hemochromatosis, a condition that causes the body to hold onto excess iron, which accumulates around the organs, bones and brain, and can lead to all kinds of serious illness later in life, and can be ultimately fatal if not treated. She was subsequently gene tested, and does have HH. Meanwhile, the strict diet I had her on for her food sensitivities was co-incidentally reducing her iron levels (though it was quite high in iron-rich foods), and they came down into normal ranges. Since it is very unusual for a pre-menopausal woman to develop iron overload or suffer any problems, the normal action is to do yearly iron studies and wait and see.
In late 2011, 2012 and 2013, her iron tests were acceptable. Her diet had meanwhile improved her health, and Sam was doing very well - slim, fit and well. Her body healed to such an extent that we were slowly able to widen the foods she could eat, from a short one page list of ALL she could eat, to a semi-normal diet, with just some restrictions. The other interesting thing in here is that mid 2013, Sam and most of her siblings were tested for Irlen's Syndrome - a difference in the way the rods and cones in the eyes interpret light and colour. Sam is dyslexic, and Irlens is common with dyslexia. 4 of my 5 kids have it, turns out. When Sam started wearing her green-tinted Irlen's glasses, so many things improved for her - reading, headaches, and most notably here, her food sensitivities dramatically declined from that point over the next few months!
Unfortunately, resuming a "normal" diet has caused Sam's iron levels to climb again. By Sept '14, they were far too high, and continued to climb. Her insomnia also began to get worse and worse, until it's rare for her to sleep well. In April '15 we began to implement dietary changes intended to reduce iron. The specialists say a reduced iron diet can help slow the climb, but can't fully reduce iron levels. I disagree, based on the fact that her diet HAD brought iron levels back into acceptable ranges before. I didn't really want to return her to the total strictness of her former diet, but wanted to figure out the clues from that time that would bring her iron down. In early April, her iron was at 98% saturation, and her ferritin and iron were at 464 and 39 respectively, far too high for a young woman! With some initial dietary changes, her mid June tests show normal iron, saturation of 64% and ferritin of 380 (a considerable change in 2 months!) She will be tested again in late July, just before we see the specialist, and I'm very interested to see what it will look like by then!
My husband and I and the three girls who are still at home all want to improve our general health and/or waistlines, so after some research we decided to go sugar and gluten free. I truly believe both those things have serious health consequences for everyone! (Grain Brain and Wheat Belly are recommended reading, both by specialist doctors). Removing those has already brought a number of improvements, but it's also unmasked the fact that my salicylate levels are too high and causing me problems, and my daughter's food sensitivities are preventing her sleeping well.
So now, we need to once again limit salicylates, amines and glutamates in our diet. I also don't respond well to high-carb foods such as potatoes; the resulting blood sugar swings keep me awake too.