Stories

Does anyone else here have nasal polyps? I have had an operation twice to remove them, but I am extremely good at growing them - yay me! Just wondering if there was any relationship to food...  Bronwen from facebook group

Dairy big time for me, have had surgery twice and had constant infections. No dairy = no infections:)  For me neither of my surgeries made the difference that stopping dairy has. I had constant sinus infections. I'm simply nowhere near as mucusy, personally I don't think the ops made much difference for me. My immune system is "compromised" as I'm a cancer patient too so was told I had to have the surgery. Still got infections after the ops, finally went off dairy and taaa daaa its much better. Infections stopped! !  - Rachel from facebook group

I don't get infections, just constant snuffly nose and I always sound like I have a cold. I'm not sure about dairy for me, I grew them just as well when I was drinking soy milk!  - Bronwen

My specialist informed me that he has found a majority of his sinus sufferers find that soy affect them  - Theresa

Yes I have. Definitely caused by foods for me. Low salicylate diet has helped a lot. Can breath thru my nose now - Jann from facebook group

The ENT specialist said that people who have asthma and nasal polyps are usually salicylate sensitive. We cut salicylates out of my diet and one week later I was able to breath through my nose. - from Geoff, see full story [995]

I have Samter’s Syndrome (consisting of asthma, aspirin sensitivity and nasal polyps) also known as Samter’s Triad or aspirin-induced asthma. For the last 29 years I have been taking medications and trying to stay alive. When I found the Australian salicylate lists I was so excited, I could finally understand what was happening. I was inadvertently eating salicylates every day. – from a US reader, story [994

Sue's comment: There are numerous less-than-accurate salicylate lists on the internet. The only figures we support are the updated lists from RPAH - ask for our salicylate mistakes information sheet: This e-mail address is being protected from spambots. You need JavaScript enabled to view it (reports received 2014)

References: Baenkler H, Salicylate intolerance, 2008 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2696737/

I stopped eating potatoes when I read story [1317] about solanine because I had similar symptoms to that guy (who wrote about " ... very irritable and highly sensitive - not of the pleasant type - symptoms in my penis and testicles and surrounding areas. At times it was painful and made me feel like I did not have full bladder control. Urinating was uncomfortable, not unlike when you have a bladder infection ".)

In my case there was no pain, just a constant wrong signal - it was kind of like "there's fluid in your urethra and you need to hold it in/pee/do something" - not easily defined. Super annoying though. It was worst right after urinating. Fluid intake didn't seem to affect it, there was no burning sensation during urination or anything like that. When the symptoms were at their worst I had a bit of bladder leakage (like a few drops). Only once or twice though.

After three weeks of avoiding potatoes my symptoms were still continuing so that wasn't it.

Then I tried going strictly failsafe again for a few weeks. I didn't realise how much I had slipped up - turns out I've been eating a lot more amines than I realised. I also took a small amount of soda bicarb - half a tsp in a glass of water.  Both of these strategies were extremely effective! My symptoms are gone, and I feel much happier. :) - by email (male, late 20s)

prediet

I could not resist sharing these photos of my little girl about 2.5yo pre-diet. On the left is the face we saw most days, all day. On the right is her now, the new girl. She has just started school and her teachers have said how great her behaviour is in class. So, for those just starting this journey of discovery, keep up the good work, be patient and good results will come.

The Pre-diet girl showed signs and symptoms very similar to severe ODD, ADHD, with anger, over emotional, anxiety, inability to concentrate on a task, several tantrums a day with each lasting anywhere up to 45 mins, self harm , irritability, aggression, frustration, laughing when inappropriate, waking screaming and going to bed screaming, very frequent wees (incontinence), aching limbs at night, blocked nose/sinus, itchy skin (no rash) sleep disturbance, lacking energy, sensitivity to touch, sounds, smells (Sensory Processing Disorder). We changed her diet just prior to her 3rd birthday and within two weeks we saw a completely different child. Even her little face changed. She became a calm, normal, loving, happy, intelligent, creative child. Her behaviour changed to what we would call normal 3 yr old. The odd tantrum, but not lasting long. The other issues she was also dealing with, just about disappeared or were greatly reduced ie sensitivity to sound/touch, aching limbs at night, incontinence, making toilet training possible. If they returned, we knew that we had gone over the salicylates threshold. We stick to a diet with her of low/mod sals. Knowing her diet, we can sneak in the odd strawberry or other higher sals foods here and there. No preservatives, additives, msg, artificial colours for her where at all possible. She is my third child, first child from second marriage. My other two children have no issues like this. Oldest has lactose intolerance. Youngest from second marriage has lactose intolerance too. Having ulcerative colitis now at 44, I realise that I had my own food sensitivities as a child and continue as an adult. I admit though, that we have not done strict challenges - Jan on facebook

I was on anti depression medication for 7 years - once on fs & eliminating sals I found my fog lifted & I'm no longer dependant on tablets. While my overall diet was a healthful one by anyones standard the sals were in fact detrimental to me. Food is in fact my medicine - as long as I stay in the low list a hard learning curve at age 50 when my husband and children can enjoy everything - Jennifer

Cuddling on the sofa with a non-fidgeting child!! I thought this would never happen!!  - Beth

That was the first thing that happened for us, my son lay in bed with us in the morning for about 20 mins and didn't move, for the first time ever...amazing! Enjoy x -Cath

My 7yo son headbangs and headbutts with annatto.  Actually he generally becomes a right little monster with it.  I avoid it like the plague.  I sometimes will allow other additives in small amounts if I absolutely have to, but I will not allow annatto under any circumstances after the last episode with it.

When did he first start head banging? He never was a child that had particularly bad behaviour.  I only took all the additives to see what would happen, and now that he is additive free, I get exceptionally bad behavioural spikes with additives.  Some additives he can tolerate small amounts of, and some there is now pretty much a zero tolerance level, eg sodium benzoate in medicines.  He didn't really head bang as an ongoing thing, but on occasion in the middle of a tantrum or when he was particularly frustrated he would do it at the age of about 2 or 3.  He also appears to be gifted, I am thinking of having him assessed.  It had stopped until I saw the annatto effects in January.

Which products (e.g.  yoghurt, ice cream) have you noticed are a problem?  I have only seen a reaction that I am absolutely sure was due to annatto involving headbanging once, and that product was Magnum Minis.  As soon as I attended your talk last year, I stopped my kids having additives, especially colours, immediately.  I did give him ice cream once that had annatto, and we had some issues at school on the Monday, but he had also had artificial colours, preservatives and flavour enhancers that weekend (we were away and I thought it would be ok for the weekend, discovered I was wrong!) so I can't be sure that he did react to the annatto then.  There was no head banging after that weekend, but he did punch someone.  That appears to be a reaction in him to flavour enhancers and preservatives as a general rule though.

How did you first realise that annatto was causing the problem?  He has been additive free since July 2010, and this reaction happened in January 2011.  He had had no other additives other than the annatto.  He has not had annatto since, and the behaviour has not repeated.

Why do you say that “I will not allow annatto under any circumstances after the last episode”?  My aunt gave both my kids a Magnum Mini after lunch, just the plain chocolate and ice cream one, which I had not given them since starting additive free.  My son was ratty and annoying that afternoon, but I put that down to being tired, as we had had an early start flying from Sydney to Adelaide.  That night she allowed them another one after dinner.  The next day, I was at the supermarket, and my son and daughter had a disagreement about something, and he just lost it and headbutted her, followed by headbutting the shelves and the floor of the supermarket, and proceeded to follow me around the shop screaming at me, and headbutting several shelves along the way.  No amount of talking or threatening of punishment had any effect.  I told him that I was leaving and walked out of the shop, and about 5 minutes later he came screaming out looking for me because he realised he had no idea where he was, and he headbutted my leg.  I physically restrained him in his car seat and waited 10 minutes for him to stop thrashing and screaming.  He was generally painful for the next 24 hours.  He had not behaved like that since he was 2.  I knew there was annatto in the magnums, but I thought a small amount would be OK, which clearly it wasn't.  I bought chocolate coated ice creams which didn't contain the annatto, and there were no further issues.  He has not had annatto since, and we have not seen any behaviour like this again.  He really hurt his sister, she had a bruise for a week.  He had never ever headbutted another child in his life before then, and his sister is half his size.  I'm not willing to risk that again, so I check everything that could possibly contain annatto before he has it, yoghurt, cheese, ice cream, margarine etc.

Any further observations? Flavour enhancers make him aggressive.  Preservatives appear to remove his impulse control.  Artificial colours make him hyperactive and aggressive.  But none of them make him behave the way he did after the annatto.  After that episode, I would rather give him any other additive than annatto.  I can usually overcome issues that the other additives cause, but not the annatto.

I only did the diet to see what would happen.  He wasn't a particularly badly behaved child, he was challenging, but he could be gifted, so challenge is part of that.  Now that I have stopped the additives, I can see the sorts of problems that other people have, because he appears to be rather sensitive to them now.  He is a more calm and reasonable child, and is certainly better behaved than most kids I know.  His behaviour didn't stand out compared to the other kids before, but it certainly does now, he is much better than other children, and I can see the effects of the additives in other kids now that I didn't see before.

Another interesting thing I noticed when I stopped the additives is that he lost over 2kg in weight in about 6 months.  He was a small, skinny child to start with (he was 19kg when I started the diet, dropped to 16.7kg, and now is 19.4kg), and the weight just fell off him.  It took him a further 6 months to catch it back up, and he eats like a horse, and has done since I stopped the additives.

Thank you for everything you do, you are amazing - Alice (report received December 2011)

My son was about two and a half at the time, when I noticed his extreme reaction to eating 160b.  We used to use margarine and eat Streets vanilla icecream (I thought by choosing vanilla flavoured products I was avoiding the colours and potential nasties).  When he ate these products he would punch himself repeatedly in the head with a closed fist and also bang his head against the wall.  Obviously as a parent, this behaviour caused me great concern, only to be reassured by people that it is just a phase and he will grow out of it.  This was the start of my journey exploring food additives and the effects they have on behaviour and children.  After buying a book and reading up I decided to cut out products with annatto, and made the switch to Peter's Vanilla Icecream and back to real butter.  Within a very short time this headbanging behaviour ceased.  No parent should have to watch their child physically hurt themselves as a result of what they eat!
 
As you say, if you notice one reaction to food there will be more.  Every time we used to go to Pancake Parlour and have the two stack pancakes with icecream he would have stomach cramps and diarrhoea that day.  We have visited doctors on several occasions regarding stomach cramps and recurrent diarrhoea.  They wanted him to have blood tests but I was reluctant as he was still young. 

Other difficult behaviours have remained with our son.  He falls in the upper range of normal behaviour, borderline ADHD, shows some autism symptoms and we are off to a Child Psychologist tomorrow for his anger which is escalating into rage.  After buying your books and DVD at the talk and chatting with you I feel empowered to start the RPAH diet.  I've had one appointment with a recommended dietitian  and on Monday our family will start on the RPAH diet.  If he can stop making the silly whoop whoop noises and been argumentative, restless and confrontational then this will be well and truly worth it (and I'm a little excited to see just how I react to certain foods!  My husband not so much!)
  
Thank you so much for the time and energy that you and Howard put in to educating the general public about food additives.  You are making a huge difference to so many families! - Sarah (report received December 2011)

I have a 5yr old daughter who is intolerant to natural foods. She becomes violent when she eats carrot and it can last for a few weeks on and off. She also cannot tolerate most fruits and unlike the violence from the carrot she acts drunk when she has fruit. We now limit her vegies, only give her bakers delight breads as we found she reacted to the vinegar from the supermarket breads and we have her on failsafe butter too.

Since changing her foods we have a happy child who is now more relaxed, we can now speak to her without her going off. She is calmer and much nicer child.

We have noticed that when we feed her something with salicylates she also sleepwalks very badly. Another thing, before we changed her diet she had ear infection after ear infection. I had her to an ear specialist who thought she needed an op but now looking back since changing her diet she only has an infection as often as a normal child - Mel (report received August 2011)

See factsheet on sleep and story collection on sleep issues

I have had my 5 year old, diagnosed with ADHD a couple of months ago, on the failsafe diet now for 2.5 weeks and have found that his tantrums that had been occurring between 12.30 and 13.30 at school (not all days but a lot) which had involved kicking the teacher and often spitting and having to be carried to the office have stopped.  I believe that 160b in Vaalia yoghurt every day, two or three serves, has largely been the issue. He is now sitting and reading his reader in one go which for us is a MAJOR change. We have eliminated all additives, colours, and only have low salicylate and no amines or nitrates, We still have dairy and wheat. We were having. He gets hot red ears at times which are sensitive to touch - I have read that this is a sign of food intolerance? - Rhonda (report received September 2011)

(Comment from Sue:  Red ears: Yes, they are a sign of food intolerance and like any other symptom, can be associated with any of the usual culprits although I have to say in my experience, dairy foods would definitely be a suspect.

Many families are extremely reluctant to give up dairy foods, and would rather do almost anything else. The golden rule of food intolerance is: whatever you most like is most likely to affect you.  I often recommend to families who are unable to give up dairy foods that they switch to A2 milk first, as a stepping stone (this means A2 milk, A2 yoghurt, Nuttelex margarine and dairy free ice cream, e.g. So Good Vanilla soy bliss). For some people this is enough. Most (if behaviour is involved) need to go further and find it easier to switch to oatmilk, soymilk or ricemilk from A2 than A1.  Note that A2 yoghurt is not failsafe - too many amines - but you can get rid of the amines by turning it into Quark overnight (see Quark in our recipe list)).

I have listed the effects on my boys 2 and 4 years plus other results if you are interested.  We started the elimination diet 6 months ago and I can safely say that the challenges were one of the hardest things we have ever done - if I was in paid employment I would have been on stress leave! 

Fortunately we have all survived (including the marriage) and have come out the other end in a much better place.   Why did we start - my eldest was having major problems at kindy - his behavior at home has always been challenging but escalated in a group environment.  A few labels were mentioned ADHD, PDD, SPD - but he didn't really seem to fit fully into any of those categories.  My other concern was we were going to have the same problems with our youngest when he went to kindy - as he is a " mini me" to his big brother. I took my eldest to a place called Learning Connections (in Brisbane) and they suggested diet.  We worked with a dietician at Mooloolaba and these are the boys’ reactions below. 

Interestingly we were doing daily homework that the OT had set - handwriting and jumping jacks while we were doing the challenges (same exercises everyday), some days he couldn't even hold a pencil and others he was too clumsy to complete a jumping jack successfully.  My youngest no longer has asthma like symptoms and only one case of tonsillitis this year, both only 1 cold this year that lasted 1 day - last year a cold would last minimum 2 weeks, and both had 3 cases of tonsillitis. Both have allergic reactions to a number of antibiotics - penicillin, erythromycin and cephalexin so maybe they are extra sensitive or maybe their reactions have escalated the problem? 

160b annatto: 2 yo - sore legs; 4 yo - sleep disturbances (I had to lie on him to get him to lie still to fall asleep, then he was up 4 times during the night with nightmares)  Both - hyperactive, restless, wet pants, screaming, angry, arguing.  This was within 2 hours of eating yoghurt, fortunately my husband was home when they reacted as we had to separate them for their own safety and we just exercised them for two hours straight then gave them a bicarb bath.  Lasted 24 hours.  Wednesdays for some reason were always 4yr olds worse day at kindy - it was litterless day - he couldn’t have any packaging in his lunchbox so I used to scoop out some of his dad’s yoghurt into a container :). Both boys used to be really "restless" at bedtime even when I knew they were tired.  They used to have custard for dessert.

Salicylates: 2 yo - dirty pants, whingy, hurt the dogs; 4 yo - long time to complete tasks, no eye contact. Both - touching, poking, prodding, breaking, arguing, impulsive, noises, loud.

Amines: 2 yo - wet and dirty pants emotional, defiant, hypo, screaming loud. 4 yo - space cadet/not listening and not responding.

282 propionates: crazy, consistently getting in trouble, emotional (2 yo more than 4 yo).

Soy milk: 2 yo diarrhea

Wheat: minor in 2 yo; major reaction in 4 yo, said he felt tingly, had the worse day at kindy ever - hurting other children, couldn't sit still very busy but very tired also, poor coordination, soiled pants, stomach pains.  

Life has definitely changed for the better for us - we still aren't there yet but we have come a long way.  I recorded one of my youngest outbursts on my phone and play it back when I forget why we are now so strict with their food - believe me a scary recording.  My eldest no longer needs the special education teacher aide to follow him around at kindy making sure he can survive the day but is now making friends and loving his kindy day.  He still has some neurological delays but is catching up really quickly. Thank you so much - if I hadn't been pushed to evaluate their diet (which I thought was healthy) I would not have read your book and my son would have a label :(. - Lisa (report received August 2011)

My 3yr old son Jack is salicylate and benzoate intolerant. I began this journey after googling head banging and your website appeared with a wealth of information on  annatto160b. I eliminated everything we were consuming Kraft cheese, yoghurt, ice-cream etc and noticed a drastic improvement. My toddler no longer banged his head on the floor or the walls.
 
After doing a supervised elimination diet, we spent the greater part of last year learning about failsafe eating and adapting our lifestyle accordingly. We went through the stage of convincing pre-school and family members that salicylate intolerance really does exist and after providing them with fact sheets from your web site they are more understanding.
 
Jack has learnt his "happy" and "cranky" foods and even asks if certain foods have salicylate or colours in them. A great learning tool was the weekly grocery shopping.The fruit and veg department became our classroom as we would talk about salicylate and foods that make us feel happy or cranky. The curiosity of a then 2yr old is amazing.
 
Benzoate was our hidden problem though. It was not until severe reactions to phenergan and valium that we joined the dots. Jack required a CT brain scan so sedatives were prescribed. After giving Jack valium, 6hrs later and we were still driving around with a 2yr old singing Playschool songs in short hand and stating I feel funny.  Finally he fell asleep - yes that lasted for all of 15mins, we got the scan done and he was still bouncing off the walls at 11pm that night!
 
I have since learnt that poor Jack has been reacting his whole life. Baby panadol, bonjela, infacol - yes all salicylate and or benzoate as ingredients!  In reality we have been making things worse for Jack by giving him over the counter medications that people use everyday in an attempt to ease pain.
 
Since managing most of the food issues we are now noticing reactions to chlorine, air freshners ( at Nan's ) and perfume (visiting aunts).  A weekend visit to relatives has become a minefield of scents and hidden benzoates.
 
Like others I have read about we too notice a difference in behaviour after weekly swimming lessons in a chlorinated pool.  After many attempts we have finally got Jack to wear goggles, but he seems to compulsively lick or drink the pool water ( I am assuming he is getting some kind of fix from it). The level of aggression following lessons is what led us to draw the link. 
 
It is a constant battle with one so young who cannot fully verbalise what he is feeling, he just reacts with kicking, hitting, head butting, talking gibberish and constantly rubbing his nose and playing with his tongue. Jack's reactions last 8 days and at the end of the reaction he gets very upset and clingy. 
 
Dealing with food intolerance can be very isolating. When you hear comments that your child is a "horrid vicious child", as I have had said to me, it is upsetting. Or being told it would be good if you came to the birthday party late so we can have all the GOOD FOOD (junk full of colours and preservatives) before you arrive.
 
Perseverance does pay though and family and friends are noticing the difference. My parents can now distinguish between toddler behaviour and a chemical reaction. I would like to say a BIG THANK YOU for all the time and effort you put in to providing us novices with such a wonderful resource.There seems to be an endless amount of information we need to process in order to protect our children and your web site and cook books have been of tremendous assistance. Your efforts keep us sane!
 
UPDATE 3 years later: to re read our story (above) made me cry. I had forgotten just how far we have travelled on this journey to a new way of living. We still have our good and bad times, but  food is under control, it's just inhaled salicylate/benzoates that cause us the most grief.
 
Jack is now 6yrs old and in year 1 at school. I spent a considerable amount of time educating the principal and his teacher last year on food intolerance and fortunately they were open to being educated!  The Principal even made note of a new student having chemical intolerance in the school newsletter, and requested parents be aware that wearing fragrance in the classroom would have an adverse effect on one of the students.
 
As we all know this doesn't guarantee people will abide by the request, but after years of slogging away, to have the Principal accept the literature we provided him & be willing to assist, was a relief. He did liken food /chemical intolerance to when nut allergy firstly came about. He remembers a lot of scepticism re nut allergy & was willing to accept that food intolerance was a real issue for Jack; the greater community just wasn't aware of it.
 
The school toilets with the automatic air fresheners are our biggest problem at school. Again though the Principal arranged for Jack to use a toilet in the administration block that did not have an air freshener. This worked for most of kindergarten, but kids being kids the teasing about being different has kicked in, so now Jack is unwilling to go to the administration block for bathroom breaks (which is understandable).
 
Most of the kids in his class are fine about Jack having his own treats for special occasion days at school, but there are always 1 or 2 kids who like to remind him his food is different (yes, tastier/healthier and home made!). I take cup cakes to school at the start of each term for class birthdays and leave them in the freezer. The lady who runs the school canteen has been lovely, and lets me take homemade pizza or chicken nuggets in and she heats them up, so Jack can have a lunch order just like the other kids. 
 
On reflection we have been blessed with the staff we have encountered at school. I have gotten quiet good at smuggling my homemade chicken nuggets and French fries into McDonalds birthday parties. I did approach them about re-heating nuggets for me, but food safety standards wont allow them to. Now I heat them just before I leave and travel with a heated medipack in an insulated lunch bag.  Then there is another one with an ice brick in it for the homemade ice cream cake!
 
As I said food is the easy part. Shopping centres, toilets, theatres and  hotels are still places we try and not frequent too often. Even going to the Doctors is an issue, with other patients in the waiting room wearing fragrance, the hand sanitisers and air fresheners.
 
We love our Rainbow Air and are no longer scared about staying in hotels. Though I still do spend a lot of time researching establishments that we can access without going through lobbies/foyers and elevators. Caravan parks with cabins or your old fashioned single story motels are safest.
 
Again Sue, I want to thank you for your tireless efforts in guiding us and reminding us we are not alone. To be honest the bad days can be really bad when trying to calm a child high on chemical overload. It is exhausting. To know others in this forum understand and are experiencing similar is comforting. Those in my circle of friends try and understand, but until you see an outburst first hand, you can't fully understand. -  Nicole by email


See more: http://fedup.com.au/information/frequently-asked-questions/perfume-and-chemical-sensitivity-questions#rainbow

http://fedup.com.au/factsheets/support-factsheets/fumes-and-perfumes

Just had another clash with so-called 'safe' medications. I asked the pharmacist to send me a cough suppressant, and discussed with her (again) my chemical/food reactivity. She sent me Duro-Tuss Forte, which, trusting soul that I am, I began to use. That night the coughing got worse and worse, to the point of being on the brink of vomiting. Next day, coughing was a little less racking and throat-scouring. Then, last night Printzmetal's Angina woke me - really bad pain, and the trigger for me is salicylates! ... Now, I thought the chemist had checked the ingredients. It turns out that she did not know anything about 'sunset yellow' colouring  (artificial colour 110) ..."-  Jennifer by email

Sue's comment: Most pharmacists do not fully understand food/chemical sensitivity. As well as  saying you want to avoid salicylates, it is important to spell out everything you don't want in your medication. See the list of 50 additives to avoid here http://fedup.com.au/images/stories/nastyadditive%20page.pdf .  It is appalling that lax TGA regulations mean artificial colours do not have to be listed on pharmaceutical labels. Wondering how this could possibly happen? The industry puts profits ahead of patient safety and regulators who were originally supposed to protect patient safety are subject to so-called regulatory capture in which people who work for regulators receive "incentives", toe the company line, or are afraid for their jobs, see Gotzsche blog

I am 75 and have taken paracetamol on occasions for many years and more recently due to a spine problem was on the maximum dose for around five months plus morphine and others. No reaction problems. However a couple of weeks ago I obtained my paracetamol from different local chemist. I took two tablets and felt a bit strange, I mentioned this to my wife jokingly that I must be allergic to paracetamol now, I have problems with most drugs but not anaphylactic. I then took another two tablets 24 hours later and immediately went into quite a severe reaction. Normally I can clear it with about a litre of water and a couple of hours. This however kept on coming back for about eight hours even taking an antihistamine. I could not understand why this had occurred.

Next day I looked at the non active ingredients. The  two makes were the same but the new batch contained E202. The tablets I reacted to were manufactured by M & A Pharmachem Ltd. Bolton. I emailed all three companies and got replies from the two that I normally use but nothing from the company I had the problem with I even followed up with a phone call.

Preservative E202 preservative is also in most fruit drinks and pops. Don't know why I have suddenly been affected by it, but since the episode with the tablets, drinks that I have always had are now affecting me but to a lesser degree - Bryan, UK

canstockphoto25394705

My Solanine story goes for 2 years and involves visits to a urologist and even a quick look up the old fella with a camera...day surgery of course, not a handy cam!!

Other than digestive issues  I found that I experienced very irritable and highly sensitive (not of the pleasant type) symptoms in my penis and testicles and surrounding areas. At times it was painful and made me feel like I did not have full bladder control. Urinating was uncomfortable, not unlike when you have a bladder infection. It had a negative effect on the bedroom activities too. Not pleasant.

My research taught me thatback in Shakespeare's day they used solanine if they wanted to bump someone off. The levels of solanine are dependent upon whether the plant had late blight, the level of green coloured flesh, how roughly it was treated from harvesting to cooking. Even dropping and bumping down a conveyor belt sets off a reaction in the potato causing an increase in solanine. Deep frying is supposed to reduce the levels of solanine. I cannot confirm this as we do not eat fried food. Rubbing the shoots of a potato is not good. Once they get to this stage the solanine is increasing.

I remember as a kid and even a teenager having these same issues. Mum grew her own potatoes and would frequently rub off the shoots, so this was bad news for me.

Happily, simply not eating potatoes did the trick. If I have a few crunchy chips, I can notice the sensitive symptoms coming back within hours. - by email, Tasmania

Sue's comment: Never eat potatoes that are green beneath the skin or taste bitter and unpleasant. Never eat the sprouts of potatoes.Some people are obviously more sensitive to solanine than others. There may be another possible explanation: to be failsafe (low in salicylates), potatoes must be large, old, white-fleshed and brown or pale skinned -  not red or other colours - and thickly peeled. Even potatoes with cream-coloured rather than white flesh are moderate in salicylates and if eaten regularly or in large amounts can contribute to an overdose of salicylates in sensitive failsafers. More information: http://www.abc.net.au/science/articles/2010/04/28/2884467.htm and http://en.wikipedia.org/wiki/Solanine

I was one of the mums who put their hand up for having a head-banging child. Our son is nearly 6 now (Aug 2011). When he was about 1 year old, he started head banging. It appeared to be out of frustration or anger. I considered it to be part of, or a type of tantrum. It was alarming for me, but over time I discovered that there was very little I could do to stop it, except try to side-track his tantrum. He would lie on the floor on his tummy and bang his forehead on the floor. Sometimes, if he was sitting, he would bend down and hit his forehead on the floor. When he started walking at about 15 months he continued the head banging. He would do it in his cot, in bed and during the day. Sometimes, he would even bang his head on the floor from a standing position. He would just bend down from the waist and bang his forehead on whatever surface was in front of him. He now carries a permanent faint scar or thickened spot on his forehead from the years of head banging.

I think it stopped when he was about three and a half. He had started preschool and I was very concerned about this behaviour. But, as is usually the case, my concerns were not realised at preschool, as he seemed to grow out of it.

I had not linked food and this behaviour until my sister mentioned it to me. He had stopped the head banging before I was able to do any intolerence testing to highlight any potential food causes.

He is now a very active kindergarten boy, who loves school and enjoys all he does. For me, he is still a handful as he is a sensory seeker. He spends a lot of his time stomping on our (very loud) timber floors and stairs, crashing into walls deliberately and launching himself at a run into the lounges and beds. He frequently hits the lounges so hard, he hurts his head on the timber frame beneath the cushioning! We have a very expensive, pre-kids, well-padded lounge. It is very hard to feel the frame in this one. He also loves to launch himself at a run at his dad and I and doesn't stop. He calls this cuddles. At 25kgs, this is tough on us. He is always hitting and touching his 7y9m old Apsy brother, causing frequent flair ups. He loves wrestles, sausage rolls (OT exercise to wrap him in a quilt and roll a fitball over him), squeezy hugs and tickles. Oh, and leaping off things, like the lounge, his bed, the third last step, off our garden retaining walls etc. All this is a pretty constant waking activity for him. Thankfully he is able to settle and concentrate in class. Plus OT exercises help!

I have been procrastinating over the RPA elim diet for him, due to (my) health reasons. After your talk, I'm again very motivated to get into it. As well as wanting to improve his behaviour which includes occasional ODD type patterns and physical health, his Aspy brother needs to do it and I know I have many issues related to food. My GP is finally coming on board and I have great confidence in my Failsafe aware dietitian.

I hope this information is of use to you, although I have no evidence of a link between the food and head banging. I am eager to see if there is a link to food and sensory seeking now! - Tracey (report received August 2011)

Update nearly 4 years later:  I wonder at the coincidence of hearing from you now, and the fact that only yesterday, before seeing your email, I pulled out the elimination diet handbook with a view to finally get into it for myself and my two sons. My then 6yo son, now 9y3m, has been struggling with learning at school. His inability to remain focused and on task in almost every area of his life is seeing him start to fall behind his peers. We have been attending counselling to assist him in learning to accept and recognise his behaviours and the consequences. We are also currently undergoing psychological testing with a view to possible ADHD diagnosis. 2 weeks ago, we started the Move to Learn programme at home as he still displays signs of not crossing his midline, difficulty with handedness and vestibular and fine motor skills issues.

I firmly believe that food is a big issue for him, and am embarrassed to admit it's just been too hard to undergo the food testing. But, it needs to be done before any further talk of medicating for ADHD. This might just be big and scary enough to get me motivated - Tracey

I have used one of your recommendations with my 20 month old. I took annatto out of her diet and I don't know if it's a coincidence but I definitely saw an improvement in her tantrums and she no longer hits herself on the head or scratches her face when she has a major meltdown. She is much more manageable when she has a tantrum and she doesn't get as upset or angry and not for as long as she used to a couple of months ago.

The items she was eating almost every single day for nearly 2 months were : Lay's Quavers cheese flavoured potato chips Pepperidge Farm baked cheddar cheese goldfish -only a little handful or so as a treat or in the car/shopping trolley, but still even a little amount adds up! The tantrums and head hitting also started around the same time I started giving her those treats - 19 months. Now she is just a couple of days off 21 months and she still has screaming tantrums, but nowhere near as severe and not with headhitting, scratching her face or full on flailing limbs. Also the amount of tantrums had definitely decreased. Thanks again and keep up the good work! :) - Vicki from UAE (report received September 2011)

We already knew that our son was hyper-sensitive to food colourings, especially 160b. We first discovered this when his sister was born when our son was 2 - he was head-banging til he cut and bruised his forehead. His behaviour was always "full on", he was impulsive, always demanding attention, his speech was delayed, but he was a fabulous sleeper. Numerous people suggested we have him assessed for autism or Aspergers. We had speech and hearing assessments. We cut out 160b for a while, and then inadvertently when he was about 3 my husband bought the wrong custard. I gave it to him anyway thinking that the food colouring link was a bit tenuous. Within 30mins he was headbanging something he hadn't done for nearly a year. The remainder of the custard went in the bin! I was really strict at not buying anything with 160b - but not really with anything else.

Last year when he was 6 and in kindergarten, his behaviour became appalling again, to the point that his teacher told me that I needed to get some help from a child psychologist to help me be a "better parent". You can only imagine how distressing this was as I was already at my wits end with a difficult child. I went home and immediately went through the pantry and discovered that foods and brands that were previously free of 160b now had it in it. One product was the apricot bites you buy in the health food section. My kids saw me with them and asked if they could have them, so I decided to tempt fate and see what happened. Within 15mins Charlie was sitting in a chair gyrating arms and legs flapping and head going up and down. Then he started hitting his forehead. I asked him what was wrong, and now, unlike when he was 2, he could now explain the sensation. He said he had pins and needles in his head and they wouldn't go away. Banging his head helped temporarily. The next day he was frightful.

Once we eliminated 160b again, his behaviour improved considerably, but despite seeming to be a very intelligent little boy, he wasn't and still isn't doing well at school. His teacher has expressed concern that he has gone backwards this year, that he can't sit still in class, he finds it very difficult to concentrate and stay focused, he is easily distracted, and he hums all the time. At home he makes silly noises, is always stirring up his sister, gets upset very quickly, is incredibly impatient and cries and screams when he doesn't get his way.

I love my kids, but I'm exhausted by them. I already know he is sensitive and now after reading "Fed Up", know that I have to eliminate a lot more than I have. Interestingly, I feel so many of my health issues are related to additives as well. The most bothersome being severe IBS since I had my appendix out 18 months ago. I was given Flagyl while in hospital and then had 6 weeks of severe diarrhoea. As a one-on-one music teacher, I can't continue to work with the amount of gas my body seems to produce. I tend to laugh about it, but it is a real issue. Like so many others, my GP and the gastroenterologist I saw have said to me "Good news, nothing is wrong!" It makes me want to scream!  So, I am desperate to find someone who might help me do the elimination diet with my kids (my daughter, while pretty well behaved had awful eczema as a baby, doesn't sleep well, is often irritable after school and had constant chest infections and thus antibiotics when she was 2-3 yrs old). Their grandmother suffers horrible migraines that are definitely food induced. I know that they are both bright intelligent and adorable kids underneath the irritable and often badly behaved exteriors. I'm petrified that I'm going to do long term damage to them psychologically because I end up so strained and exhausted that I yell a lot. I hate myself for saying this, but I often feel that I wish I didn't have kids as it's so much harder being a parent than I thought it would be. In fact, I don't enjoy it at all - Helen (story reported in May 2011)

Update 4 years later: About a year after I wrote I found out I had a gut parasite (Dientamoeba fragilis). Our son had the parasite too, so we had various course of antibiotics and anti-parasitics and within weeks he was a different child. I didn’t tell the school what we were doing as I wanted to test whether there really was change - when he came home with a Principals award for “trying hard to be a more responsible learner” I burst into tears. Even so, he remained, and remains, sensitive to annatto, and indeed many other colours, additives, preservatives etc.

Jump forward to roughly now, and I am still struggling with my gut and my daughter in particular has been quite difficult. Three weeks ago I re-read “Fed Up” and decided to try removing all additives. I was strict for a week - and it was bliss. The kids were so different - calm, no fighting, arguing, whining, sleeping better, more focused etc. And I then decided to use up some topping (Cottees chocolate and caramel topping - preservative 202). The next morning they were horrible - so everything with anything on the bad list, was thrown in the bin. The kids are back to their beautiful selves - and I must say, for the first time in ages, I’ve actually enjoyed being a parent.

They’re both very intelligent kids, but the massive block to them achieving their potential has been food.

I’m in my third year of a Bachelor of Science (Nutrition) with the hope of becoming a dietitian. Much of what is written is obviously the motivation/inspiration - Helen

I am a frequent visitor to your website as I have a 14mth old boy who is milk protein and food chemical intolerant. Your website is not only of great information but also of great support and comfort knowing that you aren't alone on what sometimes feels like an uphill battle.

My son constantly bangs his head, hits his head along with screaming but always following when something was taken from him so naturally I always believed that he was a determined little boy and was throwing a tantrum but him hitting his head with both palms has increased dramatically.

He is already on a strict diet so I just don't know how to determine whether this behaviour is due to something like annatto or is it just a simple tantrum? He seems to constantly grizzle and seem irritated each day and I am having difficulty finger pointing why.

(after feedback) I have had his diet under control now for eight months and always very careful with anything that is given to him but as you mentioned I was always keeping an eye out for the same reactions as he would previously show in the typical time frame also and did not link the head banging as a reaction. After speaking with his GP and specialist I was told time and time again its normal while tantruming but when he was continually slapping his head I knew it was out of irritation, hence looking into it further. 

Sue I must say, that since discovering my son's condition, I am frequently meeting other mums who mention their child’s consistent irritable behaviour, tantrums and constant screaming. All of which were the same traits my son had for his first six months, and I can't help but think why aren't intolerances discussed and or elimination diets recommended first? I can understand the difficulty of diagnosing however it is medication free and there is certainly no further harm for the child yet it seems as though it's very rarely even mentioned nor acted on - Jessica.

(Sue comment: Heinz biscotti and a soy yoghurt since were identified as culprits. The Heinz UK biscotti no longer contain annatto. Story submitted March 2011)

Further info:

http://fedup.com.au/factsheets/additive-and-natural-chemical-factsheets/160b-annatto  
http://fedup.com.au/factsheets/symptom-factsheets/tantrums

The following stories were found lurking in an old mailbox and in various facebook posts:

My 9 year was affected by 160b.  He was not a head banger but his tantrums did make me worry that he would harm himself as he would kick and throw himself around. A diet change for my son was a wonderful blessing he is a great kid now still has his moments but they are manageable - Therese
Sends my two completely bonkers. The sad thing is it's considered a natural Colour so is in many products listed as 'no artificial colours' etc - Kylie

Found my 6yr girl had a big reaction to aldi vanilla custard last night (160b and 407). One minute reasonable child next minute behavior off the scale - Trisha

One of the worst reactions I have ever had was to ice cream with 160b in it. You won't have any trouble finding it, it is EVERYWHERE!!!! - Carlia

She was only 10months when she started reacting I couldn't believe such a small baby could be so violent. ..- Jennifer

Another itchy, partly sleepless last night, but rare because I avoid annatto - Ray

Hubby brought home some white chocolate ice-creams (he tries to do the right thing!) for us last night and all that crossed my mind was "it's okay, I'm not sensitive to amines and I'm good with dairy". After eating two (I know) I checked the ingredients. 160(b).  So today I'm dealing with my irrational anger and massive impatience with my kids. The best way I can describe it physically is I feel it building in my head behind my eyes, it's like I haven't slept in days and am really tired - Keira

160b sends my 3 yr old climbing walls. It is one of the most dramatic reactions he has...nasty stuff - Jo

All I know is that my 5 year old cannot tolerate this at all, bed wetting, aggression, risky behaviour like running out in front of cars and just all round horrible naught behaviour of course a huge amount of food had this reaction but I have found 160b one of the worst for him (microwave popcorn oh good Lordy it's revolting the reaction) - Debbie

It is the worst additive for my daughter, she has adhd and this one makes her have massive, and i mean massive meltdowns! - Donna

My son also banged his head he was one - Mel

Jittery movements, anxiety, foggy head, eczema - Lynda

My eldest would get weepy and have terrible stomach cramps, would writhe around in agony screaming in pain. I didn't realise for ages that 160b in his vanilla yoghurt was the culprit. As soon as I stopped giving it to him he became a different boy - Kate

My 11 month old would bounce her head repeatedly off the titles she was aggressive punching walls etc snacking kids twice her size at daycare. At only 11 months old I was so scared that she had some really issue but cut the 160b and she is an angel - Jennifer

See factsheet

Interested to hear of anyone out there has had issues with food intolerance and a really bad immune system? Dd has got tonsillitis and laryngitis once again, she's sick so much, driving me crazy - Katherine on facebook

My daughter had bouts of tonsillitis as a toddler, my son had recurring croup/asthma . Took them both off dairy... they never had it again. I believe that food intolerances are the culprit for most recurring illnesses, and when your body's always struggling to fend them off your immune system suffers  - Alison

Food intolerances places stress on the body so it makes sense that you can lower your immune system and catch colds and the like more readily than someone with a good immune system. The elimination diet is a great way of improving your health especially if one is prone to constantly needing antibiotics. I did failsafe for that reason.. constant sinusitis etc.. I got to the point that I didn't need antibiotics for 18mths or more which was unheard of prior. My kids also improved. My DS, the failsafe one we started failsafe for, didn't need antibiotics until the 18mth mark.. and that was only because he got bitten by a dog.. prior to this he was at the doctors for antibiotics every 2 mths. We considered this a bonus since we did failsafe for behaviour. - Teresa

I have had my 13 years old son on a mostly failsafe diet (not total elimination diet) for the past 3 days. Last night I came home and he was skyping with a class mate to complete homework (success is a new friend and voluntarily doing homework!). I think they misinterpreted what they were supposed to do as they spent 3 hours on one subject but the fact that he stuck with it for that long impressed me. He jumped into a shower with no complaint and then picked up the book "Divergent" and read two chapters! I bought him that book weeks ago but have not been able to get him to read it - he normally goes for easy books (reading difficulties) - (forum)

Getting sick is often mentioned as linked with food reactions - Tracy

That's what her doctor said today. She mentioned that because her little body is struggling with certain food intolerances that she doesn't have much immunity left to fight infections. It did actually make sense -  Tracy

My daughter had bouts of tonsillitis as a toddler, my son had recurring croup/asthma . Took them both off dairy... They never had it again. I believe that food intolerances are the culprit for most recurring illnesses, and when your body's always struggling your immune system suffers - Allison

Food intolerances place stress on the body so it makes sense that this lowers your immune system so you catch colds and the like more readily than someone with a good immune system. the elimination diet is a great way of improving your health especially if one is prone to constantly needing antibiotics. I did failsafe for that reason,  constant sinusitis etc. I got to the point that I didn't need antibiotics for 18mths or more which was unheard of prior. My kids also improved. My DS, the one we started failsafe for, didn't need antibiotics until the 18mth mark and that was only because he got bitten by a dog. Prior he was at the doctors/antibiotics every 2 mths, considered a bonus since we did this diet for behaviour -Teresa

onoffdiet

This is just a post to encourage those parents who are persevering with Failsafe eating for their children to try and help them.. here are pictures of my 7yo son’s homework.. one week apart.. one week he was Failsafe, the next week.. Not so much. I don't think I need to point out which is which..This is just one reason why we choose Failsafe. Anything that helps him is well worth the effort - Susan

Comments:

That looks like my writing before and after lunch when I was at school - Ruth

Looks so much like my daughter. Every day is different. It also happens when reading and differentiating letters and sounds. Some days she smashes through a book in 5 minutes some days it takes 45 minutes!! Great job mum with persevering with your son - Shay

We see a big difference in handwriting too when he has eaten something he shouldn't have - Leanne

I was stunned many years ago now when my very clever daughter lost the ability to read while reacting to an off-diet food. She still knew the words, but couldn't hold them in working memory long enough to follow a sentence - Tracy

10 yrs later, I still have the first picture my son did when he was off preservatives etc - all neatly coloured in keeping in the lines - something he could never do before that - Kye

I was almost in tears of joy today. We have had speech difficulties with my Miss 4 - did not speak till 3 and would always shut down in attempted speech therapy. Today in our first session back for the year (and in a break from challenges) she spoke directly to the therapist and said every word as asked. Ok, so they were wrongly pronounced, but the fact that she SPOKE in a session was INCREDIBLE. Yeah for progress! And yeah to all you brilliant mums (took me way too long to come around! Just could never believe it would make such a difference) - Jane

Wow! In the first week of year 1 this year, our daughter's teacher asked us how to get her to complete tasks faster. After that first week of reducing sals, colours & preservatives, the teacher put a note in the diary saying Miss 5 was finishing all her work on time! Amazing what influence food has - Suzie

I have the same photos for my 7 yr old! It is so worth the effort!!! His confidence is amazing and learning has gone ahead in leaps and bounds. Big hugs Susan! It makes me beam when sharing my son’s progress! - Laura

Amazing the difference isn't it? I can't do fs with no sals for my girl as father does not believe. Managed a month and the change was amazing - Claire

More information:

http://fedup.com.au/factsheets/symptom-factsheets/speech-delay
http://fedup.com.au/factsheets/symptom-factsheets/sensitivity-to-sound-hyperacusis

Feeling emotional and grateful for the support this network has given my family over the past 2 years. Without the information I have learnt (still learning) via this fb page and the fedup website I am sure we would not have this outcome.  My little miss 5yo received an award and a photo in the school newsletter this week for her good behaviour, listening and concentration in class after her first three weeks at school. After the hell we all endured on our journey to find out what was causing her terrible behaviour/moods, this is the best thing a parent can hear! - Jan

My husband is sensitive to amines ... he has severe, and crippling arthritis of a type that the medical profession has been unable to identify. He has arthritis in both hips, both hands and both feet. I am not sure if the hips are the same type - although they are very bad he can have hip replacements. The hands and feet are what have the doctors stumped, all the small bones in the hands from the base of the fingers and into the wrist are affected and are overgrown with bone.He has no movement in his wrists at all. The feet are the same, toes unaffected but all the small bones across the top and into the ankle.

His test results are negative for any type of arthritis that can be tested for, so the medical diagnoses has always been that it is "arthritis of a type as yet unknown." The latest visit to a rheumatologist (about eight months ago) was the same. After saying that he had never seen anything as bad and hoped that he never would again (very encouraging) the doctor went on to say that although he didn't have any idea what was going on , it looked like some of the bone had died and the body had tried to repair itself by laying bone upon bone.

That of course is speculation ...What really has them stumped is that although it IS spreading it is still very localized ... The normal course for it to follow would be to spread all over the body: they say with something as bad as that in the hands, the fingers should be clawed and immobile. In fact he SHOULD have been in a wheelchair for years (this all started over 25 years ago).

The way he was a year ago, before we started the failsafe diet I thought he was just about at that point. We were largely housebound, he couldn't walk without his cane and household maintenance was beyond him. Often he couldn't turn the key in the car ignition let alone turn the wheel ... He was living on anti inflammatory drugs and pain killers.

Now he rarely takes an anti inflammatory and goes for several days without having to take pain killers. I am not sure where the cane is right now and the house is starting to look loved again. He is not pain free, we don't expect he ever will be, but the spectre of the wheel chair has receded....
Where to from here? I feel that the diet is part of the answer, a big part, but now I have to look for the other pieces of the puzzle. My husband has no faith in health professionals of any modality ... the medical profession or the natural health scene either. If I gave you a rundown on everything we have tried before finding the failsafe diet you would understand why .

My biggest problem when I started the diet was to find any reason to hope that it might help with arthritis. Thankfully I was pointed in the direction of Bernard's web site and that kept me going ( http://members.ozemail.com.au/~btrudget/). The failsafe diet has given him relief and mobility. When we did the amine challenge, my husband reacted in a few hours, with very severe pain and took well over a week to calm down. He was bedridden for almost two days. We did challenge salicylates for five days with no reaction but some in the group feel that was not long enough (Bernard experienced a sudden fullscale reaction with severe pain and inflammation on the 8th day of the challenge). - By email, NZ

See factsheet

My wife and I went for a 5 day holiday in Vanuatu. A few weeks after we came back I felt terrible, I could hardly get out of bed. I went to the doctor and said “I’ve been poisoned”. He did all the tests for Ross River fever etc but they came back negative. I had these awful pains in my joints, I couldn’t walk, I couldn’t open doors, anything. I was diagnosed with arthritis and took medication for 2 years. Then it all went away. Turns out I had chikungunya. The doctor didn’t test for that, I think it’s too new. - NSW

(Sue’s comment: polyarthritis - pain in 5 joints or more - can be associated with mosquito-borne diseases such as Ross River Fever, Barmah Forest Fever, Dengue Fever and Chikungunya . These diseases run a course of weeks or months but the joint pain can last for months or years and can be misdiagnosed as other types of arthritis, particularly with Chikungunya that is not yet routinely tested for but is now increasing in Asia and the Pacific Islands, and even in Europe).

I have juvenile arthritis for as long as I can remember,  I have been completely pain free since February last year - I knew it was carrots, did not realise what's in stock powder and lots of other places.  Since I make all my own now, no pain. I can now tolerate occasional infringements, just not regularly eating it - but I can also move freely  …  from the facebook group

I have rheumatoid arthritis, back damage and nerve issues and since eating primarily FS (ds is the one who NEEDs it --we just support and benefit too lol) I have less nerve problems , my joints and back pain is less and I have less flareups! particularly since going low grain/gluten and I am worst if I overdo the gluten and processed foods!  - from the facebook group


From the day he was born, my son screamed. At the age of 2, his behaviour was unmanageable. This was when we started the failsafe journey. Some of his behaviours were; trouble sleeping, belly aches, head banging and running out the door and across the road. The final two on this list were really bad. He would bang his head on the concrete outside, on the tiles and often (strangely) on the coir doormat. By chance, a friend went to a talk by Sue Dengate, and in this she mentioned 160b (annatto). We found this in yoghurt. When we took this out of his diet, he stopped head banging.  The other major problem we had was that he would run away, and seemed to have no understanding of danger. He would often suddenly dash across the road, even on busy streets. We tracked it down to amines. When we became really strict on the amines, his behaviour settled down greatly.  Since that time, we have found out that he has mild autism and coeliac disease, and that these things affect behaviour too. Amines are slowly and carefully being trialled again, but annatto will never come back - Claire

From a dietitian: A teenage girl thanked her for saving her life. The girl said she used to self harm and tried to commit suicide a few times as well but she somehow found the RPA Hospital elimination diet and that it was amines that were making her feel this way. Now she is amine-free she no longer wants to end her life.

If my little one has amines she is depressed. She cries uncontrollably. My sister in law also has been battling depression and anxiety. She finally listened to me changed her diet and now she no longer wants to kill herself -Kylie

It was bad enough in this house with my third child that I kept a diary for about 6 weeks. I knew the meltdowns, anger, tantrums weren't normal ie over nothing kind of stuff, were scarily angry for such a small child (including self harm) and lasted far too long and nothing was helping at all. The same things that worked with my first two ie discipline or talking to work out problems, was not working with this child. At the time, I had no idea that food could have such a big impact on behaviour/mood, BUT I SOON LEARNED! After changing her diet, we saw a different child in 2 weeks! A calm, happy, normal child. That was nearly 2 years ago. Sure, she has the normal kid melt down occasionally but that’s all. Changed our lives -  Jan

My 2 year old daughter has silent reflux and can be in a considerable amount of pain. When this happens she can't/won't sleep at home and throws inconsolable tantrums lasting hours, including self harming behaviour. Getting her medication and food intolerances sorted have pretty much fixed all the issues - Raechel

My son and daughter both self harm when they are chronic (salicylates and additives) and my son when he melts down swears and self harms - Carlene

See factsheets on self harm  and on depression 
Self-harm caused by bread preservative 282
See 44 page story collection about depression, anxiety and panic attacks linked to food

 

We found failsafe 12 years ago after an extensive search for alternatives to ADHD drugs that our daughter’s pediatrician prescribed. It was a long and hard road through primary school through the bullying and poor grades and lack of friendships, the exclusion from birthday parties because others thought it was 'too hard' to cater (despite our willingness to provide alternative) but our efforts truly paid off... with our daughter graduating with the highest score in her high school with some great friendships and a confidence that surprises us even today. This system saved our family and our marriage - I cannot express enough gratitude. Hang in there. I just remember how hard it was at the beginning, how many mistakes we made but just wanted to let people know that there is great outcomes and to not give up. Once you find the true intolerances life becomes easier - Donna

I've had a similar experience with my son, didn’t get diagnosed until 15, didn't think he would ever finish high school and if he did I was sure it was going to be a special class for kids in the too hard basket, this year he has started his Year 12 Uni pathway and has goals, such a total turn around to a kid that failed most of his school life, with hatred from teachers, no concentration or focus, more suspensions and phone calls from teachers than I care to remember and yes most importantly the family unit and the stress that it caused. I wish more people would look into what their kids are eating first with behavioural issues, but you can only lead a horse to water like they say. Good for you and your daughter, I wish I had picked it up earlier - Bec

We were the same with our 2 boys, 18 years ago - now my granddaughter is the same sal reactor and 102 reactor as her dad and probably a lot of other things they haven't worked out yet. They have a long way to go as she has just started school but it's so good that I can help guide them through a lot of it. FS was truly the best thing for my family, although we didn't go the full elimination diet and I thank my mum for discovering Sue's original book "Different Kids" that changed our lives all those years ago - Val

It's really sad that teachers can be so negative. I was adhd as a child and mostly outgrew it. Diet was never really considered at the time and I was medicated. I really did feel hated by some teachers and I love running into them these days and letting them know not only did I not turn out to be in jail, but I actually got a degree in medical science and probably have a better life than them - Larissa

Too bad we didn't cross paths back then too. It has been 12yrs since I started on the failsafe journey with my DS and yes! Wish I found it earlier too. He had finished his VCE and currently in second year of animal technology. It has saved us too! - Teresa

And as one of those kids now grown up -- you are giving your child a great gift -- how to cope with these issues for the long term - Kathy

It made such a difference for my two boys to discover our intolerances - their behaviour improved from being "those Camberwell children" to being just part of the crowd. We gave them a fresh start at a new school after being on the diet for about 18 months, and went from having the eldest bullied by both children and staff, to being well behaved and engaging in all the opportunities of school. Failsafe also helped me greatly when I found salicylates were contributing to chronic pain - I'm much better without them. Hang in there, it's worth all the effort - Kylie

Day 7 on dairy/gluten & low columns for my 10mth old. I am having trouble getting him to eat. He will happily have pear porridge for brekky but he has been eating very very tiny amounts of food for the rest of the day. I have been offering green beans, potato, crumbed chicken, rice, specially made sausages, vanilla muffins, mummums, rice crackeres, golden syrup chicken, steak, anzac biscuits. What else could I do? He is barely eating. On the upside his stools are normal for the first time in 3-4mths!!! – Katie

Withdrawals were so bad for us, from about day 4 and lasted about 3 weeks!! Make sure you persist as we nearly gave up thinking it couldn't possibly be withdrawals but it eventually calmed down and then was amazing! – Jane

The constant craving of food could be the normal withdrawals... I get them horribly if I have mucked up my diet. – Michelle

Hi just wondering if anyone has any thoughts... My husband started fs & no dairy, wheat 5 days ago & has been suffering really bad headaches, do u think from sals detox? He's tempted to give up as it's far worse than off diet!....Update 5 days later: Also some feedback about his progress, he took the bicarb & water & a long soak in a Epsom salt bath & hasn't had a headache since. He said he feels better than ever now! – Chrissie

Hi everyone, I was wondering about withdrawal also today. After the Christmas interruption I am on day 9 of Failsafe and have had a mild cold, headaches and a terrible fatigue since the beginning of the week. I could sleep forever! Anyone had that? BTW I am noticing that I don't need to go to the bathroom as much as I used to during the night! :-))) – Kendra

Our entire family went on an elimination diet seven years ago because of behaviour issues with our second son (who has oppositional defiance disorder) and to our surprise, our eldest son's behaviour got really, really bad - it turns out he was having withdrawals from the artificial ingredients. By the end of the three weeks I had four calm children and when introducing foods I noticed that the eldest is affected by artificial colours (102 especially - it's evil!), as well as the bread preservative 282, and the second son reacts to amines (gets the ODD symptoms!) and salicylates (vocal tics). Hang in there! – Michelle

My boy was the same. Don't give up. Stay on strict fs and do lots of epsom bicarb baths and caltrate to get through withdrawals. It will get worse before it gets better but for us something clicked almost overnight and suddenly I had a beautiful boy rather than one I had to wrap In a towel to stop him hurting both of us and trashing the house. Behaviour from food intolerance can be way more severe than you would think. I know it now from experience.  Don't give up!!!! Xx - Fran

Hi everyone, today was day 4 on our elimination diet, and it was marvellous. We did not have one tantrum all day!!!! My daughter (3 1/2) was totally changed, like "there", present, communicating and cooperating, trying to help me with things (!!!!) and even stayed calm when I said no to getting her apple juice at the grocery store. My partner is making jokes about what I have drugged her with LOL! So happy!!!!! ...Last Friday we met my daughter's best friend and her mother (my friend), and it was the first time the girls did not fight or scream at each other once!!! All was harmonious and well. My friend was so impressed that she took my printed copy of "Fedup" home with her - Kendra

As a family we've been on the diet for 6 months, prompted by one of our three sons who is seven years old.  We've seen a transformation in him like we hadn't even hoped for- Sue, UK, by email

Hard work at the beginning, but so worth it at the end. I kicked my asthma - off all medications; my eldest was diagnosed with ADHD - fixed by changing his diet; my middle was diagnosed with mild hypotonia (muscle tone) - fixed by changing his diet; my youngest had tantrums - fixed!!! We are still doing it 11 years down the track with some foods brought back in. Schooling excelled for all of them - Tracy

Fedup is the only thing that has kept me alive - Michele

I've had chronic asthma for 40 years and 3 months failsafe I'm so so much better - Ruth

We started FS about 15 years ago, and the change in our son and the many other people I supported was astounding. It isn't always easy, but you will find it is worth every bit of effort involved - Linda

I didn't tell my husband when we were doing challenges. His questioning regarding the kids and my behaviours without him knowing if and what we trialled really backed up what I was documenting and absolutely converted him (he was a bit skeptical to start) - Vicki

We just told our sons and family we were trialling 'healthy'eating....no reference to a diet. But boy did the school, friends and family notice the difference...and the school test results did the rest -  Linda

It's so worth it!!! I have a normal child! Tantrums involve a bit of huff and puff, not biting hitting scratching and screaming... No more holes in the walls! And going to school is now a breeze! Previously school drop of involved me leaving for work in tears most mornings... It's worth it! (Especially if u can work it out when they are younger and u have more control) good luck! - Christina

My son is 2.5 yrs old. He has wheat and dairy intolerances so his diet is very limited. Lately the day after swimming lessons he is becoming uncontrollable hyperactive and frustrated. I think that the chlorine may been causing these issues. Has anybody dealt with this before and is there anything I could do to control the tantrums?? Overall he is normally a quiet placid child - Alicia

My eldest showers as soon as he gets out for ages, but maybe he just likes to warm up - Amanda

My mr 2.5 is like an annoying mosquito after swimming lessons. We are total elimination diet (2 years now), gluten and dairy too. We have found a magnesium chlorine pool better- he is super violent if he goes near a public chlorine pool. I find an Epsom salt and bicarb bath as soon as we get home helps a lot but it is not immediate. I schedule our swim for 11.30, we come straight home and bath. I let him stay in as long as I can "practice his swimming". He is normally exhausted so I shove some lunch into him- I won't lie, occasionally this is just toast in the bath . Then he will normally have an early afternoon sleep. Wakes up much much more manageable. He is still more busy and poor concentration but less tears and tantrums - Emma

We have this problem too due to our histamine sensitivity. We have filters on bath and shower and drinking water at home and have tried swimming a bit this season using Dermeze as a barrier. Showering well after a swim and a bath with epsom or magnesium afterwards. Avoid playing with tap water outside too - Kim

I'm sure my son reacts to the chlorine too. He just won't stop jumping around and won't listen to any instructions - Nicole

My daughter gets eczema from the chlorine, I use Jungle Brolly skin barrier cream all over her before swimming, I have also read a freshwater shower before swimming helps stop the skin absorbing so much chlorine - Cathy

Epsom salt baths afterwards is good, or someone has recommended an Epsom salt/water solution in a spray bottle to spray on after the shower - Anna

Moisturizing before can also help for the same reason as showering before, even if you don't have a barrier cream - Tracy

(COMMENT: the majority of pools have some form of chlorine in them, even ‘salt’ pools but not seawater. Chlorine is a common question. See also http://fedup.com.au/information/frequently-asked-questions/perfume-and-chemical-sensitivity-questions#chlorine and http://fedup.com.au/information/frequently-asked-questions/symptom-questions#chlorine)

 

I don’t know for myself but going by my son, yes very - Corina

Make me very mean. Small dogs and children head for the hills if I am amined up! - Cathy

Yep, and irritable. I get even more emotional and aggressive if I have salicylates - Linda

Do they everrr. Grrrr - Ingrid

Very ... I can be crying at the drop of a hat or get very angry and snappy it’s awful - Lena

I am emotional therefore I eat amines (chocolate) lol. My daughter goes silly and aggressive and does things without thinking through like jumping off and over couches and chairs and what we call bull at a gate behavior!  - Shay

Makes my boy evilly mean - Sarah

I also get ADHD symptoms and then crash - Anneliese

I get irritable, frustrated and then a migraine... Megan

Totally! Emotional, depressed, irritable, easy to anger - Kar

If you count depression as an emotion - Susan

When I eat too many amines I am very teary, can't watch the news without crying - Anne

I nearly started crying about something that happened 50 years ago. Then I came to my senses. Now 2 hours later I'm just really cranky - Ruth

YEEEESSSS! hhehehehehee - Julia

I'm cranky too. From eating two slivers of banana, today and yesterday. Grrr - Linda

(COMMENT: and these are mostly adult responses, imagine how hard it is for kids. See more at http://fedup.com.au/factsheets/additive-and-natural-chemical-factsheets/amines)


After seeing the paediatrician yesterday and telling him that I have started on failsafe I was expecting some sort of support from him, not just being told that "there is no evidence that those kinds of things work blah blah blah, but I won't tell you what to do, it's your choice" - Jessy

A lot of paediatricians react like this, it’s not uncommon unfortunately. These paediatricians do not have to live with us when our children are at their peak. Rest assured there are some paediatricians out there that do support and even suggest the failsafe way  - Alex

A lot of doctors do not like the elimination diet. My doctor is certainly one of them - Serena

I had my doctor ringing me and asking me what book I had read because he had a patient like me in his office - Tracy

There is evidence for the RPAH elimination diet, just that most Doctors lump all diets together - Shelly

I am a senior and I have been getting the "there is no evidence blah,blah, blah" reaction all my life and it is so frustrating  - Michele

Some practitioners are only slowly catching up with what naturopaths have been saying for years. After hearing GPs say for decades that studies show no link between dairy and allergies, hayfever, asthma etc (MANY people experience otherwise) there was a program on ABC's Catalyst program last year linking diet and gut health to a myriad of diseases (oh what a surprise). Even the GP that was hosting the program made a passing comment that he had taken himself off dairy after repeated sinus infections. Wow! What an admission/revelation! - Bron

There is evidence. The RPAH is a mainstream hospital, using evidence-based approaches which include diagnostic challenge and confirmation. Unfortunately, there are a whole lot of other diets often recommended, for which there is little evidence, and which simply claim any benefits as due to the restriction without ever checking if it's the diet itself that's responsible. I imagine most are very tired of having people present with all kinds of ideas that they found on the internet - Tracy

I don't even mention food intolerance to Drs anymore. All the ones I have come across (except the ones at Westmead who recommended it) are negative about it. I can see the difference, a huge difference and it makes all our lives much much easier. I don't need a GP to tell me it doesn't work when I CAN SEE results myself. It would just be nice if they were more supportive - Shell

A lot of Drs base a lot of their advice on their own beliefs, old fashioned views that are biased. We are 3 months in massive change. I was worried it wasn't making a difference, but when he consumed amines and went off his dial I can see just how much - Corina

My last paed appt cost $370 (before Medicare rebate) and I left with the advice that 'I don't believe in reflux' and 'there is no point doing elimination diet' as well as 'yes as you've discovered he has issues with dairy, how long do you want to breastfeed, I'll give you a script for formula' to which I replied thanks but no thanks - Vicki

Doctors aren't trained in nutrition! They honestly have no idea - never take nutrition advice from a doctor unless they have additional training. There is a list on line of doctors who also have qualifications in nutritional and environmental medicine www.acnem.org/find-a-practitioner - Tara

I haven't mentioned it to our GP as I feared exactly the same reaction. The dietician I saw was wonderful though. I saw a doctor friend last week who had done the diet for her own son (she works at Westmead and diet was recommended by a colleague there for her son's asthma). If only there were more doctors who had this sort of personal experience!  - Aila

I have been told by many doctors and specialists that being failsafe is ridiculous. Apparently I am desperate, all because I have a difficult child and he has autism. Being failsafe is hard, but it has improved all of our lives. It has really improved my son's behaviour too - Claire

My doctor also told me there's no scientific evidence that food has any effect on children’s’ behaviour. I don't need scientific evidence. If my kids eat chemicals... they go nuts!!!!!!!!!!!!!!!!!!!!!!!! End of story.  AND I'm asthmatic... and have been drug free since we eliminated the nasties from "my kids" diets. First time no drugs in 30 years!- Cristi

At an emergency chemist I was given red medicine for my boy. I explained to the pharmacist that my boy has ADHD and was intolerant to red colouring. Thought I would relay the conversation:

Pharmacist: Well it isn't red, its pink so should be ok
Me: Pink is red colouring, he is intolerant to red
Pharmacist: But if you tell him pink isn't red then it'll be ok
Me: No, he can't have anything that is red colouring; red, pink, orange, or purple. If he does he starts spinning around and acting crazy.
Pharmacist: How about you hide it in something
Me: If someone is allergic to nuts, spreading vegemite over peanut butter doesn't make them less allergic. Just like red food colouring.
Pharmacist: Oh, you could mix it with milk to make it paler.

Thankfully at this time a senior stepped in, before I throttled the guy - Julie

I looked for information on sorbates years ago and never found any. Now that I see you have stories on your web site like mine, I'll tell my story. I'd like others who have the same problems to learn of the cause much earlier than I did.

It started sometime around 1990, and that’s a guess. I had a slow onset of fatigue, which some called laziness.

It would start as my simply being weak, slow and stupid. I didn't even know it was happening. This would be deepest for a couple of hours and the go away, followed by hours of fatigue. I just felt crappy.

But I didn't understand the effect myself. It affected my humour, my marriage and my job. I just seemed to change. I didn't even see that it varied. But when I look back, I ate foods regularly with sorbic acid/potassium sorbate.

It only got worse over several years. It manifested into what was diagnosed as depression. I went to different doctors trying to find a cure and they tried 4 different anti-depressants. Nothing helped. No one considered that it was better and worse at different times, least of all me. I have to say it was awful, a terrible emotional load to be told it is all in your head, there is nothing physically wrong with you.

In 2001 it all changed. I made the decision to lose weight and I chose a low carbohydrate diet on my doctor's recommendation. I started walking for fitness at the same time. I got much better and only rarely had problems. I went to a gym and got into the best shape of my adult life. Before that I had included both yoghurt and Miracle Whip.

I had cut almost all the sugar from my diet and felt much better. Because of this I decided I had a sugar problem.

Over the next two years I ruled out things until I finally realized it was the sorbic acid. Since then I have been pretty much free of its effects, and every time I have had them I traced it to sorbic acid, potassium sorbate or polysorbate 80.

Later: After the many years of misery this caused me, I would like very much for other to learn that not only can this happen, it does happen and is too rare to be part of the medical record. There is nothing that will cause depression, and possibly lead to suicide, like being told a very real problem is "in your head". If it wasn't for my refusal to accept "the truth" and keep on looking for a solution, I would not be here. I wonder how many people never know of the very real cause of their problems - Jim from forum.

My daughter has always been a little bit of a 'wired' child. She had eczema until she was 3 and many strange rashes after eating that came and went. However, all of this was quite manageable and she was otherwise a healthy, happy kid. Then, when she was 4 years old she overnight became utterly unmanageable. Her slight anxiety blew out of control, she was melting down 4-10 times a day over tiny things, she was disagreeable, angry and miserable (this was a child that never did the terrible twos or was a tantrum thrower). Nothing in our home life had changed, nothing seemed different except her. She was repeatedly saying terrible negative things that I never expected to hear from a small child. Worst of all, she started hurting herself during these melt downs. She would tear and her skin all up her arms until it bled, she would bite her arms until she bruised them and rip her hair out. I was completely lost.

I went to the GP who referred me to a paediatrician. He took it fairly seriously given its sudden onset and ordered a ream of tests. Waiting for the results seemed to take forever and in my desperation I was reading everything I could find. Somewhere, somehow I came across information about child behaviour and food intolerances and was directed to the FedUp website. I searched my brain. Was anything different in our diet in the 8 weeks she had been like this?  We didn't eat much packaged food anyway - but YES. Since the beginning of that year I had been buying a different 'healthy looking' gluten free commercial sliced bread for my daughters lunch (we never had much bread as I'm coeliac). She had been having this bread almost every day and her consumption of it coincided perfectly with the onset of this behaviour.  I ran to the kitchen - I just knew it must have this 282 preservative I'd been reading about. It did and I threw it in the bin. The meltdowns and self harming stopped the next day, three days before we re-visited the paediatrician to be told there was nothing wrong with her and that it was a parenting issue.

Since that time we have had only two re-emergences of this awful, awful behaviour, only ever mildly and short lived (it's coming up to two years now since this horror 8 weeks of my life). Further investigation has shown she is sensitive to some degree to natural food chemicals, particularly amines and we limit those.  I have never had the guts to retest her with anything with 282 in it and am happy to never have it in my house as long as I live.

When I saw those awful statistics about young kids and self harm I felt sick. This is on the rise just like all allergies and mental health conditions are on the rise. I had to share my story and hope it can help someone else or get action - Kylie by email.

After four years of incessantly visiting medical professionals in two different continents (yup), I stumbled upon the FEDUP site while researching MSG and food dyes "snide effects", as I had empirically determined their nocivity (“ability or capacity to cause harm”) to my kids.

My 12yo daughter has begun Failsafe two months ago.

She's today mostly free of her blinding incapacitating migraines, sleep apnea, general brain fog and learning difficulties, mood swings, heartburn, bad joints pain‚ which turned her from a dancing, swimming and Tae kwon do competitor into a foul-mooded, sleepy‚ couch potato,  etc... we are currently moving on to tackle her autoimmune Hashimoto, with a very positive outlook. This is the girl that underwent isotopes checks, CTs, MRIs and countless blood tests... the girl we were kindly advised "would not have a really 'normal' life" unless she took medications meant for epileptic and schizoid patients (and how "normal" is that?).

This WE I challenged her with amines (slow cooked meat and chocolate) without waiting for your book to arrive... bad idea all over and she's been home since. But at least we remember it used to be "like that" all the time.

Needless to say, her endocrinologist, gastrologist, ENT,and neurologist, are for the most part dismissing my enthusiasm, or even the causal link with the dietary change. But hey, we don't need them so much any more. Our beloved‚ pediatrician is convinced but adamant that he can't offer parents such a "hard" diet to follow lest he be dubbed a dangerous extremist. And it's for people like him, and the dozens of families he could help, that I'd love Failsafe to become common practice here.

My 7 yo son has gone from a "Dr Jekyll and Mr. Hyde" personality, which included plain meanness, virulent on-and-off‚ ODD, and actual violence, followed by heartrending bouts of crying and heavy "drugged" sleep, to showing the world and his school the all-around nice, bright kid I knew he was, and his honors roll presence is exactly correlated with his "sticking by the Failsafe rules" periods.  Our asthma inhalator sits unused for weeks already. Son's jaw- grinding, bedwetting, sleeves munching, and shouting all kinds of weird "war cries" at the most unbecoming moments, his bouts of self-hitting, his nightmares, are a thing of the past (did I say "thank you" already?). For him too, the amines challenge was... let's say premature - family from France

We now have a new saying in my house – “A-mines turn me into A-Meany”!!

No more chocolate or bananas (or chicken skin) for me, ever. Makes me awful (cranky, reflux, lethargy, tiredness). Luckily I don’t react to salicylates so there is always coffee to fall back on!!

After doing these challenges (I am yet to do food additives etc), my family has begun to realise that there may actually be some credibility to  ‘my crazy diet’ of the last couple of months. My partner, who has anger management issues, is also prone to eating copious amounts of both bananas and chocolate. He is now committed to changing his diet to see if it helps with his angry outbursts! (the people that he works with will be very thankful for this knowledge!)

I have suffered for over 30 years with reasonably mild but persistent issues ranging from reflux, tiredness, foggy brain, itchy skin etc. Doctors have at various times looked at me strangely, given me dozens of blood tests (then ignored me when the tests have come back negative to everything), and tried to prescribe me anti-depressants. No doctor at any time EVER suggested food could be the problem. So far I am intolerant to wheat, amines. Not sure about dairy or soy (will re-test). I feel better than I have ever done (except during the failed challenges!!) and will be forever grateful to your website and the RPAH research.

I may even get on my high horse one day and write a submission to the Government outlining how they can save $1000000’s in medical costs, and increase the productivity of 1000’s of workers, all by modifying the diets of sensitive people. The fact that seemingly so many are affected, and the solution is so simple, yet there is no mainstream push to address this issue, is mind boggling.  Thanks again  - Tamsyn, by email

In October 2104, Howard and I embarked on a long, high, difficult six week trek in the remote Dolpo region of Nepal. Our guide, KB, was brilliant - young, fit, strong and clever, he spoke excellent English and we enjoyed his company. However, on the 14th day of the trek, KB admitted he was having terrible trouble sleeping at night. The problem had started on the first night of the trek and was getting worse. He had also become extremely sensitive to night noises such as barking dogs. He didn't have to tell us that because we’d already noticed that he would spend his nights throwing rocks at noisy dogs and even, rather bizarrely, ask mule train and pack horse drivers to remove the bells from their animals' necks.

This was a puzzle. Insomnia and hyperacusis – an increased sensitivity to everyday sounds - are commonly associated with some food additives and natural food chemicals, but I knew what KB ate because we were eating the same: additive free local foods mostly roasted barley flour porridge and two big serves a day of rice, lentils and vegetables. I checked that his drinks were okay, mostly water and weak milky tea, and that he wasn't using chewing gum.

Then I asked about toothpaste. You have to consider everything that people put in their mouths because additives can be absorbed through skin, whether you swallow the toothpaste or not. KB looked stunned. We read the label on his toothpaste. Bingo. It contained five colours, but even I couldn’t tell what they were, because toothpaste labelling is not covered by the same rules as food. It is one of the dirty tricks that manufacturers use to hide nasty additives from concerned consumers: they use Colour Index numbers. So the list read “colours mica/CI 77019, CI 16255, CI 17200, CI 177491, CI 77891”.

toothred

I usually look those numbers up on our website, but here we were in one of the most remote places on the planet and I didn’t have access. We could see the toothpaste was red. Get rid of it, I suggested. “But it is recommended by the World Dental Federation”, KB said.

Out went the toothpaste and KB’s problem disappeared overnight. I later confirmed that one of those numbers is artificial colour E124. When used in European food, it has to carry a warning about adverse effects on children's behaviour and attention, Another one - naphthalene red - isn’t even permitted in food, so no one knows what the side effects might be.  I was furious with toothpaste manufacturers, governments and therapeutic goods regulations for permitting this confusing labelling, and with the dentists in the World Dental Federation for endorsing such a product. The effects of chronic insomnia are well known, and include an increased chance of accidents. This product was actually putting our lives at risk. We had to cross 15 high passes and survive a massive snowstorm that killed 47 trekkers so we needed a guide with the best concentration and coordination possible.

There was one fact I wanted to look up when we got back. What exactly is the World Dental Federation? Turns out it’s a professional group that runs congresses for dentists, and it is funded by …  wait for it … the same multinational company that makes KB's toothpaste. - Sue Dengate

toothFDI

More information: http://fedup.com.au/factsheets/support-factsheets/toothpaste

  • you have just spent $17 on leeks for the week - Annie
  • your son starts eating out of the garbage bin at school so he can get his colour and preservative fix - Anna
  • you are caught swapping your homemade FS birthday cake for the highly coloured piece he has just been given - Leeanne
  • your shopping from last month is in the bin and you’re looking at blank shelves - Magrat
  • every time you leave the house you are carrying an esky - Alex
  • your child sneaks a grape when you are shopping because he misses them - Larissa
  • mum doesn't put the water back in the fridge is cause for a complete emotional breakdown for your 5yo (and we are only day 1) - Jessica
  • I was thrilled to find leeks for 50c each at the farm-gate place I go to - Sarah
  • you start buying the 5kg bag of bicarbonate soda... Denise
  • your child begs you for broccoli in the supermarket - Kathryn
  • every time you say no to something your 4yo says "oh yeah because it has dangerous chemicals and persevvvvvvEties in it"...... Paige
  • your child tells you he wants his old life back - before the diet - Michelle
  • you want to laugh/cry when your hubby brings home Nuttella when you had Nuttelex on the shopping list - Amanda.
  • the letter to Santa includes strawberries & mangoes! - Samantha
  • you have to get glasses for reading food labels - Sarah
  • you suddenly know what citric acid is and start using it in heaps of recipes cause lemons are off the menu - Selena
  • your husband starts crying and says "I just want a curry" - Lareina
  • you spend your whole day cooking and washing up! - Claire
  • your pantry is filled with home made pear jam! - Katherine
  • your 4 year old starts smelling food with 'nasty chemicals' just to get his fix - Aprille
  • you shop twice a week just so you have stuff to eat because nothing in a packet except rice cakes is any good. Also, when $15 for 4 chokos you don't even like but feel you should eat so that you're not just eating potatoes and celery for vegetables seems like a good way to spend your money - Jane
  • and when you know how to use those chokos and the aforementioned citric acid to make gluten/soy/dairy/egg/nut-free FS "lemon" slice and think it's quite a good idea and very tasty - Jane again.
  • you have the only kid that throws a wally cause they can't have a banana, or gets that excited that they fall over themselves when they can finally have one on challenge week - Matthew
  • you feel so rebellious when you notice you missed peeling a bit of skin on the pear and you eat it anyway - Chanel
  • decaffeinated coffee made with rice milk becomes appealing - Siobhan
  • you burst into tears after a cop pulls you over to ask for your registration papers..and we are on day 8 and are in struggle town - Kristy
  • you consider moving countries as it is so hard to buy the things you need in west africa...oh - and when 1 leek has been known to cost $12 - Karen.
  • you go out to an all-expenses-paid work dinner and order steamed rice and water - Tabitha
  • you're eating rice for the third time that day - Jo
  • planning meals for a holiday takes a week in itself! - Belinda
  • your son tells you "you need to apologise for saying NO to foods all the time" - Ali
  • my 4 yr old brings home red jelly he made at daycare and asks "has it got colours, flavours and preservatives in it?" - Annie
  • you're at the gym and the lyrics to the song say, 'All I wanna do is be with you tonight', and you're thinking, 'All I want to do is be alone tonight and cook' instead - Cassandra
  • you have CHICKEN with Rice for dinner three nights a week and to mix it up on other nights you have............... RICE with chicken! - Nikita
  • your three year old explains why he hit another child whilst on a challenge..... "Chocolate made me do it" - Alison
  • you smell carob powder and like it! (just a few months ago it smelt like vomit...) - Simonne
  • you know you're failing the salicylate challenge when your 7 year old sobs hysterically because the sentence got changed in 'Chinese whispers' (like it's supposed to)!!!!!! - Jessica
  • there is nothing on the menu that you can eat and it takes three goes for the waiter to read back your order correctly but the kitchen stuffs it up anyway - Jodi
  • every single meal and snack you eat involves rice - rice, rice syrup, rice oil, rice crumbs, rice puffs, rice cakes, rice flour, rice milk, .... (Have I missed any?!)  - Jane
  • people look at you like you have 3 heads when you try to explain it - Siobhan
  • it takes 5 minutes to do your weekly shop because you only ever buy the same 10 things and you know exactly where to find them! - Sally
  • ur toddler eats grass u freak out about possible sals. But when he eats sand ur fine with that - Lola
  • I couldn't ‘like’ every post here without getting repetitive motion injury :-) Too funny everyone. Your courage reminds me that I need to do this for myself and encourages me - Aya
  • you are SOOOOOOO over pears. .... Natalie
  • your child refuses to eat the things you have spent so much time hunting and gathering!!!!!  - Karen
  • you have breakfast out and have to bring your own bread, oil, nuttelex and rice milk. You're so excited about eating out even though you get charged $15 for the eggs and shot of decaf  - Linda
  • your weekly grocery shop costs $700 until you complete amines challenge and you don't need to buy less-than-48-hour-old organic meat that costs more than a kilo of gold! 5 months in and surviving!! - Moraig
  • everything in your trolley is white and green - Elisa
  • you look at a granny smith apple or a strawberry like they're dark chocolate. Oh how I miss all 3 - Karen
  • ppl look at you like you're a freak when you try to explain Amines and Sals and a lot of what all you lovely ppl have written above - Trina
  • you're missing juice so much that bottled water actually starts to taste interesting - Chanel
  • having extra garlic bread after dinner has the same currency as ice-cream does in other homes - Aimee
  • ur 7 year old son says "thank you so much mummy for letting me have carrot sticks, that's so nice of you!" Cause he's missed them.. 5 months in.. Susan
  • you're day 5 into Sals and your almost 7yr old collapses in tears because she can't find her "favourite" purse. .. She sobs "It's been stolen!", you suggest looking in other bags as you know she likes to put bags in bags. ..."NO! I've already looked in all of them and it's gone! " but when you go to where she is, you see the handle of said favourite bag sticking out of another bag which is right next to her. Claire
  • you drive across town in a quest for the right variety of potatoes - Veronica
  • you get so cross at your child’s kindy because they promote the bringing of 'healthy' dry biscuits (pizza shapes etc) and discourage any homemade cakes/muffins etc because they contain sugar! Ahhhhhh - Tori
  • you're about to start the very last challenge and you know it has to be the one to kick off Armageddon because you haven't reacted to any of the others - Karen
  • ooooo just thought of a good one! when your Christmas advent calendar is filled with: milkybars, milko chews, milk bottle lollies and activities for you all to do as a family and your kids ask everyday when December will hurry up! lol - Tori
  • you look in the fridge and the cheese looks like it's been nibbled at (my son is also dairyfree) - Sondrene
  • your veggie patch has 6 different varieties of beans and an entire bed of spring onions and chives and nothing else - Stephanie
  • your husband keeps thinking of excuses to visit his mother at dinnertime....... Karen
  • your heart sinks every time you look in the school bag to find there's another cake day, pancake day, pizza day in school or a birthday party invite - Lynn
  • your dietician says you have disordered eating and tells you that even the anorexics she sees every day in her clinic allow themselves to eat more food than you - Catherine
  • anything packaged on a supermarket shelf looks "evil" - Tammie
  • you stop getting invited to people's places because your too 'hard' to cater for! - Toni
  • your son goes away for the weekend and you pack enough food to feed him for a month just to make sure he doesn't run out. You also provide the leeks for their dinner because you don't want them to have to spend the fortune it has cost you to buy them - Larissa
  • you find chocolate show bags on the top shelf of your pantry (that must have been there for several months and were given to them for free) because you promised them they could have one now and save the rest for later then hoped you had hidden them well enough so they would forget about them! - Tori
  • you look at other people's trolleys and think "Yuk!" - Howard
  • and you have to stop yourself from pointing out all the nasties that they are feeding their children without knowing it - Karen
  • I look at other people's trolleys with all the fruit and dairy products and think "yum, I wish I could eat those"! - Jane
  • you wake up on Sunday morning and think "I shouldn't have said yes to those crisps with all the additives in that I ate last night while I was watching the x-factor - Catherine
  • you're also a dietitian and explain to people that white sugar, white bread and seed oils are NOT the enemy - Viv


(thanks to everyone on the Sue Dengate facebook page!)

To coin a phrase from the UK Inland Revenue advertising........”To have depression, is very depressing”.  It is also very debilitating, with symptoms of loss of energy and fatigue, poor concentration, physical and mental slowing down and anxiety. I had all these symptoms over a period of forty years, and they increased in intensity during the twenty-year period from 1960. During this time, I was married and had two children. It was a difficult time, as the depression affected my working life, although I was able to hold down a job as a dispenser in retail pharmacy, my accuracy at dispensing was not compromised, but promotion eluded me. During the early 70’s, I opened my own drug store in the City of London it was a struggle to order goods, keep the books, and I was under constant stress to maintain the status quo. 

By this time, I was under medication from my G.P., which did not have any effect. He also recommended group therapy, which I attended on a weekly basis. This was a total waste of time, as I realised that I was not like the people who attended each session, especially as I learned that some of them had been going for four years, and still had the same problems.  By this time I was becoming suicidal, as I could not cope with the idea that I would have to wake up each morning with all the symptoms, and fight my way through each and every day.

I then decided to take stock of the situation and realised that there must be a hidden agenda and a cause for my depression. I started going to the library (no internet in those days) to look for some thing that could help me. One of the books I found was “Not all in the Mind” by Dr. Richard Mackarness.  From this book, I discovered the world of food allergy and food intolerance that Dr. Mackarness had encountered on his trip to America in 1958 when he stayed with Dr.Ted Randolph at his clinic in Chicago. He learnt that Dr.Albert Rowe in the 1920’s and 30’s, designed what he called the elimination diet, this was further improved by Dr. Randolph who introduced the five day fast at the beginning of an investigation. On returning to the UK, Dr. Mackarness tested this method in his general practice for several years.

However, the case that caught my attention was a patient who was violent, self harming, abusing her children and with strong feelings of guilt. She had been treated with ECT and a wide variety of medications in high doses, which did not produce any improvement. The doctors were considering brain surgery. Dr Mackarness suggested that food intolerance could be the problem. He then set up an experiment under controlled conditions where he starved the patient for five days and then she was given test doses of specified foods. It was shown that certain foods (one of which was pork) made her violent, and if she kept off those foods, her condition improved drastically. So much so, that she was sent home with no medication at all, and remained well, as long as she kept to the safe foods.

Was this the cause of my own problems? My mother had been diagnosed with manic depression, which was never resolved, even though she was treated with ECT and was on continuous medication, and she died of a cerebral haemorrhage. Could she have had the same problem? Why didn’t my GP ever mention that food could have been the source of my depression?

I then decided to eliminate wheat and dairy products from my diet, to see what would happen. This was a tough decision as my favourite foods were bread, weetabix, cow’s milk, cheese, ice cream and biscuits. However, I persisted, and I remember waking up one morning, three weeks later, with a clear head, and not feeling tired.. I was normal!!!!!!.  It was an incredible feeling.

To make up for the foods I had eliminated, I was eating a lot of eggs and chocolate. The symptoms returned, so they were out. Eventually, I found that oats and rye affected me, also beer – anything with grain. My alcoholic refreshments were limited to the grape, champagne, brandy and red wine....not bad, I suppose.  However, my intake of fruit and vegetables increased, I could eat fish and meat. I stopped tea and coffee, and kept to fruit juice and herb and fruit teas. Rice cakes replaced bread.

Today, there are plenty of wheat-free, gluten-free and dairy-free foods, soya and goat’s milk, cheese and yoghurt. However, for thirty plus years, I have lived an active life without wheat and dairy products. At age eighty, I am still active.I have my own teeth, and I am not on any allopathic medication. I eat organic foods (without pesticides, hormones, herbicides, and additives).

In the area of mental health, it is sad that the medical profession has chosen to ignore food intolerance, even though it has been proven (especially by the work of Dr. Mackarness) that food can be a contributory factor. In my opinion, the two indications to food intolerance and mental health is:-  1) the food that you love the most and crave for, is the one that is doing the most harm and,  2) if long term medication is not producing a cure, then there is probably another agenda. Elimination diets can be carried out in tandem with medication to see what happens.

In January 2006, the Mental Health Foundation launched their campaign “Feeding Minds The impact of food on mental health”. They asked me if I would tell my story to the media and I was on BBC1 TV, BBC Five Live and LBC, plus other newspaper follow-ups.

“My Story” and other articles have been published in the U.K. newsletter of the “Action Against Allergy” organisation which was founded by Dr.Mackarness, who in his later life retired to Australia. 
 
My mission is to spread the word, especially as there is an increase in mental problems amongst the younger generation whose diet needs to be addressed, rather than blanket medication - Brian from the UK

Question: Is it true that the longer you stay away from a food that you know you react to (with food intolerance, not allergy), the worse the reactions when you have it accidentally?

I have seen no scientific evidence that if you avoid foods you become more sensitive over time. People who report this are usually seeing reactions more clearly because the baseline behaviour is more settled. When there is an infraction, it is easier to see - Howard

I found this was true when I was diagnosed coeliac. I remember telling the doctor my reactions were worse when I accidentally ate gluten now I was on a gluten free diet. His answer was I just hadn't realised how bad I felt before the diet - Anne

Yes it feels like the reactions are more severe but as you say my perception is now heightened due to knowing what it is like to be "normal"-  Michelle

Not in my case! In fact, after a few months' break, I could tolerate the same (and/or related) 'adverse' foods in small amounts, but as soon as I 'binge' eat again, the battle is on! - Ray

I have been failsafe for about 5 months. My symptoms cleared up pretty well when I was following it strictly but lately I have been experimenting with a little bit of forbidden food and my symptoms seem to flare up almost as badly as when I was eating a completely non-failafe diet. It does make me wonder if I have become more sensitive to those foods, and whether it's worth it - Bianca

I agree with Wendy. My gut seems to have healed somewhat. Yaaay - Nicola

It seems quite the opposite, the longer we are away from a food, the better small amounts go when we start back up, and as long as we are patient she can steadily increase that food but very slooow steady to avoid overload. That said I have noticed that if we push a food till we get a strong reaction, we have to fully remove even small amounts of that food for months before she can tolerate half the amount she was tolerating before - Adreanne

I completely agree that reactions may seem worse when reintroducing some eliminated foods, but that is a warning that your body does not tolerate them well. I eliminated gluten with my son (to be fair), only to discover that it gave me terrible headaches. I had suffered with headaches for years, but put it down to genes. Now, after a couple of years on a gluten free diet, I can have some gluten containing foods without much fallout. I believe healing has taken place as a result of removing the offender - Shakti

One thing often described is an initial increase in sensitivity, which settles. That's what we saw. To me, that is kind of like the pain of taking off the scab before the recovery is complete, while leaving it be allows for recovery - Tracy

I agree that it's true that when you remove certain foods you can see the reaction more clearly, however I also think it's possible that your body develops mechanisms of dealing with certain foods that it's familiar with - Salome

My son’s been fairly strictly failsafe for nearly 9 years. We are going to do challenges again after Xmas but I'm pretty sure (from when we've allowed non failsafe days) that his tolerance of previous foods has improved heaps. He initially vomited and had extreme diarrhoea for cows’ milk and Sals. No longer - Amanda

Yes a small infringement was very obvious but as we stuck to FAILSAFE for many years, we began to add small tolerable amounts to my sons diet until he had increased his tolerance threshold (for ADHD and OD behaviours). He seemed to be able to tolerate larger amounts of his trigger foods (sals) after a while - Rochelle

It's like alcohol, the more you drink it, the more tolerance you have for it? We've been able to build up tolerances staying low FODMAPS.... It's slow and steady but we are getting there - Justine

To take this discussion a bit further (and a warning as this gets a bit technical): I understand that RPAH do not agree with me about seeing reactions more clearly. If I am correct, they think that the body does have a capacity to handle tolerances up to a certain point and develops suites of enzymes to handle chemicals to which you may be reacting.

    Lactose is a simple example. If you continue to eat milk then the lactase enzyme (which breaks down lactose) stays active and you don't become intolerant. But if you stop eating dairy, say during adolescence, then the lactase enzyme becomes less active and you may develop intolerance. Many Asian people are intolerant of lactose because they don't, culturally, eat dairy all the time as in the Western diet. There is also evidence that their lactase enzyme is not as genetically "inducible", that is, it doesn't become more active if they keep eating lactose.
    Another simple example is the alcohol dehydrogenase enzyme which is at high levels in the livers of serious drinkers and very low in those who drink little. This enzyme breaks down alcohol. Again, there is evidence that Asians and Aborigines, for instance, have genetically low levels of this enzyme and so are adversely affected by quite small levels of alcohol. This simple enzyme is also "inducible".

    But most food has many chemicals in them and it would take a very wide suite of enzymes to be inducible and induced so as to handle the wide range of intolerances that may exist. This is why my belief is that most claims to increase tolerance are not accurate. As I said, there is no science that I am aware of about this area. But I am very interested to hear people's experience of slowly increasing tolerance over time - Howard

Many said "as he got bigger his tolerance went up" (but) I say that doesn’t make sense. Four years (of slow introduction) he can now eat a pint of blueberries without reaction, but if I place a single shred of raw carrot in his meal, he will have a reaction so severe you would think he had eaten a pound! So his overall "tolerance" has not increased, but his body has seemed to accept specific foods....-  Adreanne

My son has been failsafe (sensitive to amines) since he was about 12 months old, allergy tested at 6 months, but allergic to nothing on that panel. Now, at 15 is anaphylactic to peanuts- found out on a school trip, testing himself. So my assumption is that abstinence caused this - Anita

For my daughter and myself it's quite clear: we get FAR more sensitive after eliminating. And no, it's not because it's now clearer when compared to baseline. I eat amines quite freely now and don't get any reaction normally, unless the amount is really huge, but when I eliminated them, one small bite would make me crash. I think it would make sense that at least for SOME people the body would now "forget" how to cope and do worse - Susan

Note that any comments on allergies (as opposed to food intolerances) have been removed from this thread. Your allergist can provide you with advice about this issue. See the full thread at https://www.facebook.com/groups/128458328536/permalink/10152826694708537/

Well, after 3 months failsafe, my 8 year old son had a terrible reaction to what I suspect was 635. We gave in to Chargrill Charlie's, and within 12 hours, my son was coughing incessantly. He seemed ok to go to school (I didn't recognise what was happening), but I got a call from the school that he was having difficulty breathing. They gave him Ventolin (as per Asthma Attack protocol), and I brought him to the hospital as he was white, sweaty, shaky and very frightened. He later told me he had a blinding headache and felt like there were bubbles in his throat.

His headache dissipated over about 3 days which I treated with Panadol and Nurofen. He was quiet for several days, which is very unlike this energetic boy!  - Kathy

(Note that Nurofen is not failsafe; people who react to salicylates usually react to it)

Sulphites send my 17 yo into a complete ODD asshole, more than typical teenager shit and attitude, he has had it all his life and only cottoned onto food intolerances when he was 15.  Since cutting out the crap that sends him loopy, from depression, out of control anger, tears and stuttering and almost like Tourette type syndromes, he has gone from a failing student all his life to one getting A's and B's in most subjects and doing uni pathway for year 12 next year. Honestly we are all in amazement this is happening, its hard work, nothing in the supermarket is hardly ever suitable and he's fussy but so worth it because the whole family pays for it when he goes off track, as you can imagine a 17 yo with his friends eating and drinking anything they want, I have no control when he isn’t home.

I love the facebook group, makes you feel not so isolated and alone with issues like this, people think you’re being fussy or just making it up but if they had to live with consequences it would a different story. I have a six year old daughter who is thankfully benefiting early on from what we have learnt from my teenage son - Bec

I have had diarrhea for 20 years. I eliminated salicylates one week ago, and have seen a dramatic turnaround! Amazing! ....I've completed three weeks now, with excellent digestion! There was only one exception. We ate out in the mall. Got bad diarrhea. Interestingly, it hit 36 hours later. A delayed reaction, that I've learned from you. Two days to recover. After that, no salicylates, no problems! Consistent good digestion! This is so fantastic! - American living in the Philippines.

That book you sent me has done wonders. His teacher and counsellor just said WOW that diet really is amazing, Tyson is with us on this trip - thanks Kate

Being failsafe is something you have to do before you believe it. I taught a preschool child once who was following the diet to improve his behaviour. I commented that he should have been medicated. Now that my son has been down that road (becoming failsafe for behaviour) my tune has changed. Diet does make a difference. Unfortunately advertising sways opinions - Claire

I am another of those mums whose 2.5 yo went from numerous huge melt-downs a day, very clingy, hitting, defiant (the list goes on...) to a wonderful angel.  I am a bit disappointed that when I've asked for help from a counsellor and my GP, the responses are always about behavioural strategies! - Erin

My son has been on ADHD medication for 5 years (he's now almost 12) - while it served its purpose in the beginning, in the last 12 months he'd been aggressive, had a racing heartbeat and severe verbal and physical tics. Two weeks off his medication and three weeks on failsafe and all his symptoms have stopped and his teacher says he's more focused in class. I wish I had of been informed of the diet option before being told medication was the only solution. What's safer for our children? Dosing then up in medication (even if it is working) or changing their diet. I almost feel I was a lazy parent for taking the easy medication option without even looking at possible alternatives - Larissa

Pity this article on ADHD http://www.themonthly.com.au/issue/2011/october/1317868852/gail-bell/prescribing-behaviour  didn't include Sue's work. A major and disappointing omission.

Over 20 years ago our family went through the whole drug treatment, Connor rating...all the things referred to in this article. We changed schools, endlessly we tried to work out why one child hyperactive, the other so very withdrawn. Tested high IQs but little school engagement. Medication was all we got from paediatricians. Things were bad......ritalin awful, I felt terrible drugging them but both not functioning at school without it: what to do? Eventually we were lucky enough to find failsafe and things turned around big time. No drugs. Life unbelievably better. As adults the ability of our kids to study and manage other aspects of their life has depended on whether they have chosen to be failsafe: this article suggests this is a childhood condition butIi am sure that once a person has these intolerances it is highly likely they will carry them into adulthood.
Reading this article I couldn't believe how little has changed.....except, all those years ago, ADHD was little recognised in schools.

Now a grandmother, I look back and strongly urge families to really hang in there with failsafe.....read Sue's books for inspiration. The minor inconvenience of going FS is nothing compared to the joy of having a happy family. One shouldn't have regrets, I know, but our family life, loving and close as it was, would have been very very much better if we had come across FS much earlier - Jane

I'm really sad today. I'm in a mums and bubs group and one of the mums posted that there child was diagnosed with ADHD and now she has to medicate her child. I posted about the great results I have had with being failsafe. And I was made out to be the freak using alternate ways and I should be using the medications. . But they didn't want to know that I'm now symptom free..I NO LONGER HAVE ADHD!

Thanks to Sue and her amazing network. I'm just sad that it's the freaky way to go.. Kylie

My son was diagnosed as ADD in 2006 age 5. Instead of Ritalin (as was prescribed and given to us in a brown paper bag after our visit to a paediatrician at Adelaide Children's Hospital), we did the elimination diet and found he is lactose intolerant. If he has lactose it affects his behaviour, concentration and memory for up to 3 days. Even after 8 years of sticking to lactose free, if he has proper dairy he gets quite sick (vomiting and loose bowels). Just to clarify, my son CAN drink and eat lactose free products with no effect at all, but if he has "normal" dairy products, he has the behaviour/memory issues and vomiting and loose bowels.

His behaviour has gone from what was classed as "off with the fairies" before we became lactose free, to now after even small amounts of dairy he becomes full on, silly/naughty and asks silly things and runs about crazy, his pupils dilate, he can't keep his hands still and definitely not concentrating - Kerry-Anne.

Oh what a journey I have had! As I said before my 5 year old son developed a chronic tic disorder and I was at my wits' end, I took him to so many doctors who told me that nothing can be done, then  I found your website.

I noticed immediate results by cutting out the additives but I could not get him to baseline. I then contacted one of your recommended dieticians. I cannot speak highly enough of this lady. She has been a light in the darkness. As I have told her myself she was the first person to say “yes I can help you” when so many others didn’t want to know. With her help we got to baseline (which means symptom free!!!) within about a month and worked through the challenges. He can now have mod to high sals, mod amines, glutamates on occasion and no additives at all!   But he looks normal and is getting on wonderfully at school. I have learned so much about how food affected both my children’s behaviour as well – even though this was not why I was doing the diet.

Doctors and dieticians here are amazed at our story and results!

Thank you from the bottom of my heart, for without your work my adorable little son who was born perfect, would still be living with this chronic condition, and I have no doubt that the knock on effect of this on my entire families mental health would have been a negative one - Karen

See also 7 pages of other stories on tics and Tourette's syndrome

Almost three weeks into our salicylate free diet and seeing some nice changes. I should add we have also changed to A2 milk and less wholegrain wheat in breads and cereals. My boy seems calmer, less oppositional and able to reason with. But we've also noticed a change in his fine motor skills...his hand writing has changed and he has done up the buttons on his shirt for the first time ever. His language also seems better, with lots of new words and a subtle change in the way he speaks.

Our boy has a chromosomal deletion, a severe speech delay, global developmental delay and sensory processing disorder so we've been dealing with a lot his whole almost 7 years! I kind of wish I had looked into his diet earlier but we are here now.

3 months later: We still doing low sals and things seem a bit calmer. Still some challenging behaviour but hes got a lot going on poor boy! Interestingly his craving for fruit has gone, I'm limiting to golden delicious apples, pears and bananas...max two pieces a day now - Sandra

I found a great dietitian through your website and can't recommend her highly enough.  She was smart and compassionate, up with the details and yet practical.  Nothing loopy or vague about her, and yet she understands when feeding a child you really need some options you can make spreadable!

I also want to share that after 3 years of seeing a gastroenterologist with encopresis, my 7 year old son was CURED after five days on the diet.  My husband who was initially a little bit sceptical (although supportive of trying) is also totally amazed after seeing the results, and telling our friends about our success with the Failsafe diet.  Our son's whole personality has changed now that he doesn't have a sore tummy and solidified poo all the time.  I hope that one day soon there is a refereed medical paper on this, as there are so many specialists saying "it's only anecdotal".   I have to say that the dietician said she has rarely seen such a quick response so we may be somewhat unusual.  Our son also had strong negative responses to the challenges we did later on (although each one took about 5 days to show).  In fact after the amines challenge we could not get him feeling healthy and having normal bowel movements again without a laxative "washout".  We have decided to keep him on the strict elimination diet for six months before we try to do any more challenges. 

Interestingly, although my husband and other son found no changes on the elimination diet, I felt better than I had for years and have chosen to follow the strict diet unless I am eating out with friends.  Both salicylates and amines (and I suspect sulphites although have not bothered doing a specific challenge) affect my mood, and muscle fatigue and pains I have lived with for years.  I have been a functional parent and employee as viewed by outsiders, but insiders know how much I struggled to keep it all together.  Things are much better now on the diet.

Thanks for your great work with the books and the website.  We would never have heard about this otherwise. - Marita

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