Failsafe 99 (January - April 2021)

bannerlarge

The Food Intolerance Network provides information and support for people worldwide using a low-chemical elimination diet free of additives, low in salicylates, amines and flavour enhancers (FAILSAFE) for health, behaviour and learning problems.

Focus:

Teens do failsafe

Shame on you, FSANZ

Changing the food system

Research:

Antibiotic use and the development of inflammatory bowel disease
Dietary emulsifiers consumption alters anxiety-like and social-related behaviors in mice in a sex-dependent manner
Environmental issues
Control of salicylate intolerance with fish oils
Ever wonder how research found out about A2 milk?

In brief:

Eating in the 60s - and has our food changed for the better?
Hayfever is increasing - can diet help?
Sue Dengate's famous presentation “Fed Up with Children’s Behaviour” free to view
Hair and eye lash pulling (trichotillomania) can be helped by diet
“Let food be thy medicine, and let medicine be thy food”

Your questions:

I just wonder what the thinking is for people who have food intolerance as to whether to take the covid vaccine?
I saw that boiling and baking significantly reduced salicylate, anyone know how significant?
People are talking about ‘coconut aminos’ and other ‘liquid aminos’ instead of soy sauce. Is it failsafe?
When I drink white wine, it seems to make me really depressed and teary - is it salicylates  causing the effect?

Success stories: [1584] – [1594]

[1594] Teenager with autism and depression (March 2021) COURAGE AWARD
[1593] One-liners (February 2021)
[1592] 200 sorbate: serious allergic reaction (February 2021)
[1591] Obsessive-compulsive disorder OCD and diet? (edited facebook thread) (January 2021)
[1590] Salicylates: over-indulged on cinnamon candies (January 2021)
[1589] ASD: “Please give me some hope” (edited facebook thread) (January 2021)
[1588] Autism: “ASD improved out of sight” (January 2021)
[1587] Autism: “so many improvements in all areas” (January 2021)
[1586] ASD: “his defiance, stimming and yelling has reduced significantly” (January 2021)
[1585] ASD: “have seen huge improvements” (January 2021)
[1584] Autism: “all those pre-failsafe foods caused his autistic traits” (January 2021)

Failsafe shopping list: Food Intolerance Resources from RPAH; SPECIAL OFFER on Friendly Food

Factsheets: over 100 science-based information sheets on symptoms and additives. See also video resources. See also story collections

Support community: Failsafers talking to each other. New and updated dietitians.

Cook's corner: Latest At the Failsafe Table - it is fantastic

Thanks and admin:

            heading1hello
SueDengate2012small

Hello everyone

As Covid-19 continues, Failsafe Newsletter 99 below includes an answer to this reader question:  “I know you can't tell people to get (or not get) the vaccine, but I just wonder what the thinking is for people who have food intolerance as to whether to take the chance …”

Reader stories are everyone’s favourites. The highlight this time is Jemma’s story - as a teenager with autism and depression - as told to us in an amazing zoom interview that made me laugh, cry, and cheer: “I have found massive improvements”.  It won a COURAGE AWARD and features in the hugely popular blog post Teens do Failsafe

Also a fascinating trichotillomania (hair-pulling) story [1551] and blog post: “My 3yo self harmed, hair pulling, biting her own fingers, kicking, screaming prior to a change in diet. Two weeks after changing her diet we had a different child and have never seen that again…”

canstockphoto1803899small

… and many others – including autism, ASD, OCD, salicylates, sorbates and some grateful one-liners: “I’d be lost without your resources...there must be so many people like myself who you never hear from, who follow silently, but whose lives you have changed. So, THANK YOU! 🙂 – Lisa” story [1593]

Now read on...and stay safe.

 - Sue Dengate
                                                                                                                                                                                                                                                                                                                                                                                                           heading2focus

Teens do failsafe

Q. How do you get your teenager to stick to this diet? – mother on our facebook group

A. Failsafe teens can best answer this question! Many thanks to those who have shared their amazing stories – and especially Jemma  from the facebook group  who just volunteered to do a zoom interview READ FULL BLOG

“I am 18, turning 19 in March … I’m currently in university, studying on campus. I have ASD (Autism), GAD (Generalised Anxiety Disorder), ADHD and Depression…  I have struggled all my life with food intolerances, in fact my mum tells me I almost died when I was a baby because of them. I was failsafe until I was 5 and then mum eased off a bit. And I recently went back on because my symptoms were getting out of hand. I have found massive improvements…” [1594] 

BlogteenJ  WATCH VIDEO (9min 26secs)  READ FULL BLOG

Shame on you, FSANZ

Here are three recent blogs focussing on where the Australian food regulator FSANZ has failed food intolerant people.

Gout – Shame on you, FSANZ!

gout01

According to a new study from Sydney University

- gout is on the rise world-wide
- New Zealand now has the highest prevalence of gout in the world, with Australia second
- in the last 20 years, gout cases have risen up to 20% in Australia  

Experts can’t explain this - but it is pretty obvious to us that our food regulators FSANZ are to blame. The rise in gout corresponds to the approval of flavour enhancers 627, 631 and 635 by FSANZ in the mid-1990s, without recommended warnings to gout sufferers. READ FULL BLOG with the science

Asthma - Shame on you, FSANZ!

canstockphoto19384082small

Australia has the highest asthma prevalence in the world for adults. For children, Australia and New Zealand are in the top 4 countries in the world.  Research shows the prevalence of diagnosed asthma in Australian primary school children increased massively for a decade, then decreased slightly. An Australian diet study found 66% of asthmatic children reacted to sulphite preservatives.

Researchers can’t explain these changes - but the answer is obvious to us: asthma prevalence is strongly linked to the levels of sulphite preservatives (220-228) and other nasty additives in our food supply! Food regulation does not understand this, nor does the National Asthma Council Australia. READ FULL BLOG with the science

Food colours – Shame on you, FSANZ!

According to the latest survey results from the PISA program for International Student Assessment

- Australian school scores have plummeted globally (in maths, reading and science) over the last 18 years, see graph below
- New Zealand and Australian students now rank 27th and 29th of 79 countries for maths
- 7 Asian countries are top, followed by many European countries with the UK at 18th

BLOGcolours01

Experts can’t explain this dramatic decline, nor why UK for instance went up since 2010 in maths and reading - but it is pretty obvious to us that our food regulators FSANZ are to blame for not following the 2010 lead of the European food standards agency regarding artificial colours. EU countries are generally flat-lining, not declining, but they have always used few artificial colours. Europe acts, Australia doesn’t. READ FULL BLOG with the science 

Changing the food system

FINletterhead

Several high-level reviews have been underway for the past year into improving the food regulation system and all other aspects of the food system that fails so many consumers.

The Food Intolerance Network has made two detailed submissions (see links in blog). Thanks to Network members who helped develop these.

The bottom line

As consumers and customers, we want a trusted approach to food policy and regulation that recognises the breadth of food integrity issues (safety in its broadest sense, food security, food sustainability, personal and community health and nutrition, competent enforcement of standards, etc). READ FULL BLOG

                                heading3research

Antibiotic use and the development of inflammatory bowel disease

Higher cumulative exposure to antibiotics (particularly broad spectrum) may be associated with a greater risk of new-onset IBD and other forms of IBS. This was a case-control study in Sweden. https://www.thelancet.com/journals/langas/article/PIIS2468-1253(20)30267-3/fulltext Here’s what our Network reported in 2012: In a survey of 2,029 attendees, 77% said that irritable bowel symptoms are a problem within their families. This is an astonishing figure. We asked whether any of the following were a problem for those attending or their immediate family, and 1,555 people said yes: reflux, indigestion, stomach aches, bloating, flatulence, nausea, mouth ulcers, bedwetting, diarrhoea/ constipation, sneaky poos or 'incomplete evacuation'. Only four people had never taken antibiotics in their lives and one of those was only three months old.

Dietary emulsifiers consumption alters anxiety-like and social-related behaviors in mice in a sex-dependent manner

This 2019 paper by M.K. Holder et al. showed that common dietary emulsifiers carboxylmethylcellulose (CMC) and polysorbate 80 (P80) alter the composition of the intestinal microbiota, increase adiposity (weight) and induce chronic low-grade inflammation, with significant changes in behaviour. https://www.nature.com/articles/s41598-018-36890-3 None of these changes are taken into account by food regulators at present. Colitis and other IBS symptoms have also been reported, see science here.

Environmental issues

We generally leave environmental chemical activism to others, but these three well-referenced articles in the NY Times are worth a read.

These Everyday Toxins May Be Hurting Pregnant Women and Their Babies - PFAS, industrial chemicals used to waterproof jackets and grease-proof fast-food containers, may disrupt pregnancy with lasting effects. https://www.nytimes.com/2020/09/23/parenting/pregnancy/pfas-toxins-chemicals.html?action=click&module=RelatedLinks&pgtype=Article

This Chemical Can Impair Fertility, but It’s Hard to Avoid - Hormone-disrupting phthalates can be found in everything from plastics and household goods to personal care products. Studies have shown they may be harmful to women’s reproductive systems. https://www.nytimes.com/2020/08/25/parenting/fertility-pregnancy-phthalates-toxic-chemicals.html?action=click&module=RelatedLinks&pgtype=Article

The Harmful Chemical Lurking in Your Children’s Toys - A scientist tracks the dangers of flame retardants, meant to protect children, and why manufacturers cannot seem to stop using them. https://www.nytimes.com/2020/11/23/parenting/home-flame-retardants-dangers.html

Control of salicylate intolerance with fish oils

This 2008 case report by E Healy et al. reported on three patients with disabling salicylate-induced intolerance who experienced reduced symptoms following dietary supplementation with omega-3 polyunsaturated fatty acids (PUFAs). All three patients experienced severe urticaria, asthma requiring systemic steroid therapy and anaphylactic reactions. After dietary supplementation with 10 g daily of fish oils rich in omega-3 PUFAs for 6-8 weeks all three experienced complete or virtually complete resolution of symptoms allowing discontinuation of systemic corticosteroid therapy. Symptoms relapsed after dose reduction. They concluded that fish oil appears a safe and effective treatment for this difficult and often serious condition. https://pubmed.ncbi.nlm.nih.gov/18795922/ However failsafers have reported adverse reactions including behaviour problems, depression and migraines to a range of fish oil products, see factsheet

Ever wonder how research found out about A2 milk?

Australian Sir Bob Elliott was Foundation Professor of Paediatrics in Auckland who made key contributions on cystic fibrosis. But as a genuine scientist he was puzzled as to why Type 1 diabetes was extremely rare in Samoan children living in Samoa but relatively common in Samoan children living in New Zealand. They were drinking a lot more cow’s milk in NZ, was that it? But Type 1 diabetes was also very uncommon in parts of East Africa where the human diet was focused on cow milk. The answer is that there is a small difference in the beta-casein protein - African cattle are the A2 type, whereas many European cattle produce beta-casein of the A1 type. Bob did mouse trials and found that  47 percent of the mice fed A1 developed Type 1 diabetes but none of those fed A2 became diabetic.  The dairy industry in particular was more than a little hostile to the notion that a milk component could be the problem. Adapted from a moving obituary by Keith Woodford, author of ‘Devil in the Milk’ https://keithwoodford.wordpress.com/2021/01/10/farewell-to-sir-bob-elliott/  See also A2 milk factsheet

                                                                                                                                                                                                                                                                                    heading4inbrief

Eating in the 60s - and has our food changed for the better?

canstockphoto0594063A

In the 60's

Pasta was not eaten in Australia or NZ.
Curry was a surname.
A takeaway was a mathematical problem.
A pizza was something to do with a leaning tower....

READ FULL AMUSING BLOG

Hayfever is increasing - can diet help?

BLOGhayfever

Last year, a study in the northern hemisphere found that airborne pollen counts and pollen seasons have been increasing as average temperatures rise. Is that happening here?

It seems to be. According to Professor Haberle who runs Canberra’s pollen count, one in three Canberrans is allergic to pollen:  “We’re seeing some of the pollen seasons becoming longer and stronger, and they’re also starting earlier so that already points to climate change having a significant impact on pollen in the air.”

Failsafers often report less hayfever symptoms with diet. READ FULL BLOG

Sue Dengate's famous presentation “Fed Up with Children’s Behaviour” is now available to view for free (1hr 12mins).

Subtitled version in 6 languages (English, Dutch, French, German, Italian, Spanish) can also be viewed for free.

The Bonus material (interviews with parents) can only be seen in purchased version

DVD3

Hair and eye lash pulling (trichotillomania) can be helped by diet

canstockphoto1803899small

What a strange thing food intolerance can be! But nothing in the medical literature, CBT and hypnosis not helpful. See new blog from Sue Dengate

“Let food be thy medicine, and let medicine be thy food”

This common statement actually dates from about 1926 and does not appear in Hippocrates writings. The original Greek oath, literally translated, says: “I will apply dietetic and lifestyle measures to help the sick to my best ability and judgment; I will protect them from harm and injustice”. Another text by Hippocrates, reads: “In food excellent medicine can be found, in food bad medicine can be found; good and bad are relative”. Hippocrates was a strong proponent of going on walks. “Walking is a natural exercise, more than any other form of physical exercise". https://www.drgoodfood.org/en/news/let-food-be-thy-medicine-hippocrates

                                                                                                             heading5yourquestions

Q: I just wonder what the thinking is for people who have food intolerance as to whether to take the covid vaccine?

A: We carefully avoid taking a position on vaccination in the Food Intolerance Network. Personally, Howard and I are very supportive of vaccination and have had our own lives saved by typhoid vaccinations. We have had a doctor friend whose daughter died because he refused vaccination, which reinforces this position.

We know of no reason at all not to have the covid vaccination and intend to have it as soon as it is available. It will benefit society and ourselves with no foreseeable risk.

Q: I just bought the newest friendly book, I saw that boiling and baking significantly reduced salicylate, anyone know how significant? – thanks to Kate for pursuing this question

A: I wrote to RPAH asking for the evidence upon which they based their recommendation but did not receive a reply. So I'm sorry, I do not know of any science about reducing salicylates by cooking. If you go here https://en.wikipedia.org/wiki/Salicylic_acid on the right there are figures that show salicylic acid subliming (turning into a gas) at 200'C and being somewhat soluble (dissolving) in water at 100'C, but it is more soluble in fatty substances. As with any food intolerances, try it and see! If salicylates WERE very soluble in water and then you throw the water away, then that reduces the salicylates. But as they are not very soluble in water, boiling in water is not a useful way of getting rid of a lot of them. But they are very soluble in oils so that is better way to reduce them, but who wants to boil their tomato in oil, skim off the oil and throw it away, so not very practical! The bottom line is that cooking is not a great way to reduce salicylates, it is better to choose low salicylate options in the first place (Howard Dengate).

Q: People are talking about ‘coconut aminos’ and other ‘liquid aminos’ instead of soy sauce. Is it failsafe?

A: No, not failsafe if you react to glutamates. Made from coconut sap, rather than soybeans, and sea salt, they are being touted with dubious health benefits as a substitute for soy sauce. Like soy sauce, coconut aminos contain glutamic acid, the source of the flavour the Japanese have named “umami,” meaning “deliciousness,” but according to one manufacturer, Coconut Secret, they are 14 times as rich in glutamate as soy sauce! Braggs Liquid Aminos were forced to remove their ‘No MSG’ claim by the USFDA “Under Section 403 of the Federal Food, Drug, and Cosmetic Act it is deceptive and misleading to say "No MSG" or "No MSG added" on a processed food label that contains free glutamic acid. It is for this reason that the FDA forced Live Products, manufacturer of Bragg Liquid Aminos, to remove the words "No MSG" from the product's label."

canstockphoto9393471small

Q: When I drink white wine, it seems to make me really depressed and teary - is it salicylates  causing the effect? - Sharon

A: As I never tire of saying, everyone is different and the range of reactions is astonishing. If you are drinking white wine without using SO2GO or PureWine (in most bottle shops, to eliminate the sulphites 220) then you may be reacting to the sulphites which are far higher in white wine than other wines. But it might equally be the salicylates or even the amines in the wine, both of which are high. You can test by seeing whether you react more to white than red, for instance (rose is also very high in sulphite).
                                                                                                                                                                       heading6successstories

You can scroll through the full text of all stories: for every story we report, there are probably another 10 that cover similar issues. And these are just the ones we get to hear about. Names have been changed to protect privacy.

Success story collections: organised by symptom or by additive keywords are proving the most popular downloads from the website. They'll be added to as time permits.

People tell us that stories are so useful and positive!

[1594] Teenager with autism and depression (March 2021) COURAGE AWARD

I am 18, turning 19 in March … I’m currently in university, studying on campus. I have ASD (Autism), GAD (Generalised Anxiety Disorder), ADHD and Depression…  I have struggled all my life with food intolerances, in fact my mum tells me I almost died when I was a baby because of them. I was failsafe until I was 5 and then mum eased off a bit. And I recently went back on because my symptoms were getting out of hand. I have found massive improvements - Jemma  WATCH VIDEO

BlogteenJ 9min 26sec

[1593] One-liners (February 2021)

Thank you FAILSAFE - despite late nights, lots of people, excitement and travel we enjoyed two happy, cooperative children who, even now, are sitting quietly happily playing together 🙂 – Rebecca

I’ve been experiencing this same phenomenon the last few days since we cut sals. My 6 yr old son walked in the back door this arvo with his arm draped over little sisters shoulder. It was the cutest thing! - Annabel

We are truly grateful for the work that you do, with much appreciation, the XXX family

Your website and detailed information has helped me immensely with my food and chemical sensitivity – Tim

Thanks as always for your continuing support & advocacy for all of us with food intolerances – Jenny

You guys are doing great work so thankyou :) - Adam

I'm most grateful for The Failsafe Cookbook and website which have and continue to be a lifesaver to me. Your educative work is invaluable - the support and guidance it has given me has changed my life - William

I would like to say thank you for what you and Sue, and all those who assist you, do. Since listening to Sue speaking at the Fedup Roadshow in Clare in 2013 our family has been avoiding the colours, flavours, preservatives, synthetic antioxidants & flavour enhancers listed as problematic, and boy do we know when we stray!! It's not easy to keep up with so I rely constantly on the information you provide in your shopping list re additives in foods. It is always kept up to date, and problems/changes noted. I'd be lost without your resources. There must be so many people like myself who you never hear from, who follow silently, but whose lives you have changed. So, THANK YOU! 🙂 - Lisa

I'd like to say THANK YOU for your valuable, relentless and inspiring work in the field of food intolerance! One cannot overestimate the support - both through information and self-empowerment - that you give to people affected by food intolerances and those caring for people who are affected - Sylke (Berlin Dietitian)

canstockphoto588415small
 
[1592] 200 sorbate: serious allergic reaction (February 2021)

I can attest to sorbate allergies that started with my cheeks flushing, heart rate going up and coughing in 2006. In 2007 I broke a rib trying to suppress a cough after eating at a restaurant. I went on an elimination diet for 1 month eating only rice, then re-introduced fruits and veg, then meats and dairy products. By then I had worked out it was an additive because I reacted to yoghurt but not milk. Eventually a fruit juice gave the reaction. Since then I have avoided it as far as possible. However despite my best efforts sometimes one still gets exposed. The allergy has progressed to bronchospasm, upper airway obstruction and hypotension requiring 4l of IV fluids to restore. I now carry adrenalin (Epipen) on me.
 
Different countries contain sorbate in different things. In South Africa butter only contains salt, in Australia some butter contained sorbate. The same brand of ice-cream in South Africa does not contain sorbate but in America it does… - Josie (South Africa)

See Sorbate factsheet

[1591] Obsessive-compulsive disorder OCD and diet? (edited facebook thread) (January 2021)

Has anyone here ‘cured’ OCD and severe eating related anxiety/preferences using the failsafe diet? Asking for a friend’s 5 year old who is really suffering ❤️. At the moment he eats a gluten bread with propionates, dairy cheese, a gluten brioche with preservatives, orange juice. He won’t eat anything else. I think he accepted water the other day as a sub but she tried GF bread and that was not acceptable. Wouldn’t even touch it. Really tough situation - Emma

Yes. Immediately. Cut out food dyes and processed foods. Immediately a different child. Found out it also helped my migraines and lead me here and autoimmune diet. But it was hard and a lot of trial and error - Kay

My little boy displayed some strange OCD type behaviours before FS and all went away within a short time of beginning the diet - Maria

Yup. Honestly, it turned out that all of the foods I had childhood anxiety around, I'm severely reactive to - Becky

Have they looked into pans/pandas? - Elendel (Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) is a clinical diagnosis given to children who have a dramatic - sometimes overnight - onset of neuropsychiatric symptoms including obsessions/compulsions or food restriction. Said to affect 1:200 children. https://www.stanfordchildrens.org/en/service/pans-pandas/what-are-pans-pandas

Yes and am finding out the hard way what happens when a 10 year old, (usually gluten free and simple failsafe) has some Tim Tam treats as a school holiday treat – Rose

I’ve found out with ‘messy monkeys’ ... a “healthy” breakfast cereal gifted to my boys for Christmas – Fi

My son had motor and vocal tics that went away with the diet changes – Cath (see Factsheet on tics and Tourette symptoms)

Anxiety/OCD could be related to something entirely different that is just manifesting itself in food issues as it is a means of ‘controlling’ something in the little ones life. A good psychologist or counsellor might be beneficial. I know if a little one who has anxiety around food cos she was told to chew her food slowly as she might choke and then the next night her brother almost did choke. So now she takes forever to eat. So, as I said, it depends on the issue at hand – Ruth

[1590] Salicylates: over-indulged on cinnamon candies (January 2021)

Back in the late 80’s I was dashed to RPAH after I over-indulged on cinnamon candies. I was under the care of Anne Swain and Dr Robert Loblay and also met with Sue Dengate at the time.  I was found to have severe salicylate intolerance and have pretty much remained on a very restricted diet for decades. After a decade of living abroad and recently returning to Australia , I am absolutely OVER the MOON to see the leaps and bounds in the understanding of salicylate intolerance! There’s so much more understanding, information, education!

THANK you so much for your amazing work. So many more people are now aware of the dietary restrictions of salicylate intolerance. So thankful for finding this group! – Mimi

[1589] ASD: “Please give me some hope” (edited facebook thread) (January 2021)

This thread has been edited to preserve the flavour of a recent long discussion in the closed Failsafe group

Question to parents of autistic kids: Did you see them getting worse before getting better after starting the diet? Today we are on our 5th day of diet. I saw benefits like good sleep, less anxiety and good energy. But today he is irritated, looks sick, crying, pinching and inattentive. I’m feeling very low. Please give me some hope.

I must also mention my son gets horrible symptoms after eating stuff like okra , eggplant. He becomes uncontrollable with his silly laughter and hyperactivity. Which lasts for some time followed by crying/cranky days.   Problem here is our 7 yo can’t say what is bothering him and we are already on gfcfsf corn and soy free diet since many years. Now he is much better now focussed , happy , energetic but still stimming eeee and playing with his saliva – U.

The diet worked here, but it was very important for me to keep a food diary of all foods/ingredients eaten by my child. Sometimes something you might think is okay is actually a trigger. It’s a bit of detective work, but well worth it in the long run - D.

Symptoms can be from foods eaten up to 3 days prior! It also depends on the cumulative effect of repeated foods or food chemicals groups eg salicylates. So it might appear that a food is tolerated one day and not after a few days as the body has reached capacity - L.

I have one child that failsafe was amazing for, and the other it made no difference. Both have Autism - K.

If you see withdrawal reactions pretty quick there is absolutely hope, unfortunately it can get worse before it gets better. Sleep improvement was 1 of the first things I noticed within days. Hang in there, get through the withdrawals, you will be glad you did - S.

We had over a week of withdrawals and looking back I could see each of our food reactions being stripped away one by one. Aka the withdrawal symptoms mirrored her different intolerances (Sals make her vague, amines make her antagonistic, glutamates make her hyper, antioxidants make her crazy). After withdrawals she calmed right down - R.

We had no withdrawal symptoms but did find extra foods he was not ok with. And as he was having extra of those due to the more limited diet it can be confusing... the dietician and allergy specialists we worked with were very helpful in this - M

Mine had both digestive issues which improved dramatically and one child had behavioural issues and had been asked to do an autism assessment. His teacher later commented that she could no longer see signs of autism. He is currently having attention issues,  sometimes after adding a few new foods so will have to scale them back again and experiment. He is still extremely focused on certain things and is very sensory and somewhat emotional at times, but no longer screams, cries, hits, can't focus etc unless he eats the wrong foods – M (again).

I have symptoms of autism and work with autistic kids. My experience is that we aren’t sensitive to natural foods as a rule - we’re reactive to food additives and additives in other products. I don’t believe in withdrawal symptoms in my experience if you’re still reacting that means you haven’t eliminated all your triggers yet – M2.

We can't say that all symptoms will be gone if he's avoiding his true triggers. I don't think autism is something to "cure", but manage – M2 (again).

I guess that the other thing to keep in mind is that not everything is going to be about food chemicals. Stimming and playing with saliva are potentially sensory seeking behaviors that allow him to engage with his environment – M3.

[1588] Autism: “ASD improved out of sight” (January 2021)

My eldest son had already been through some trauma by the time he was 4, but when we moved to a new house and he was covered in head-to-toe bites I assumed it was insect bites, midges, mozzies at the new location.  So, I covered him up, and put-on insect repellent and still they came up, we went to Dr after Dr who all said they were insect bites.  After a period of months, I mentioned this to my mother who told me that if the ‘bites’ appear symmetrically on the body then maybe it was food reaction.  One of my first obvious clues.

By now he had started school, an event I had eagerly anticipated as my son was very bright and loved to be engaged.  However, school did not go well, my son was angry, aggressive, violent.  At home he made constant noises, threatened to hurt people (in his mind he was joking), couldn’t sleep, he had weird breathing patterns, he itched all over (and was covered in scars for years), his hair stood on end, he had potty words in every sentence, I also noticed echolalia and palilalia, he couldn’t sit in a chair (literally), was never ever still, he couldn’t focus, on timeout he would smash his toys and ruin his furniture, I was constantly called in after school by the teacher for his behaviour, by the time I had him home he was so uptight he would start punching me.  Things were not going well.  Unfortunately, things at home were also difficult, my partner at the time had taken an adversarial position against our son’s behaviour which did not help at all.  Due to his critical and difficult positions I did not feel I had any support in trialling the elimination diet as I knew he would not help and would certainly not change his diet in any way at all.

By now I was beside myself with strain and stress.  I again mentioned my son’s behaviour and skin to my father, who is severely food intolerant.  He told me that skin rashes like that are the tip of the reaction iceberg and often only show after all the other ‘hidden’ reactions like soft tissue swelling which can occur all over the body including the brain and nasal passages.   The penny finally dropped. I realised just how much my son was suffering from what was most likely a severe food intolerance.  My then partner worked FIFO 3 on 2 off, so I waited until he was on for 3 weeks as I knew it would be enough time to dive right into the elimination diet.  I also spoke to my sons P & C canteen ladies who were super supportive and made sure there was food and drinks he could order at the canteen for lunch like the other kids.

Both my sons and I started the elimination diet, focusing on ‘what you can have’ rather than ‘what you can’t have’ attitude.  I had read that if it works you might get a strong reaction on day 4 or 5.  Well, on day four my eldest son and I both squared off for war of the worlds.  Grrrr! We were both so mad.  I though ok, this is good. I’m hopefully on the right path.  We stuck at it 100%, toothpaste, cleaning products, food, everything.

The changes revealed themselves slowly, one by one little miracles occurred over the next three weeks including the following:

•    No more hives.
•    No more constant noises.
•    Breathing improved.
•    Sleep improved.
•    Behaviour became much less aggressive and defiant.
•    Digestive issues settled down.
•    Swearing in every sentence disappeared!
•    Echolalia and palilalia disappeared!
•    And after three weeks, the child who could only hide in the corner and hiss in response to upset, turned around to me and announced: “You know mum, I really don’t like it when you boss me around.”!!

The elimination diet wasn’t a cure for ADHD and ASD, but for us it resolved much of the worst behaviour and allowed his true nature to come through.

His ADHD symptoms settled a great deal but he was still hyperactive, but I believe that was largely due to the home situation and that he was also suffering from trauma, additionally having ASD and being in a regular classroom was challenging for him.  His teachers worked with him and gave him two desks.

His ASD improved out of sight, he was still himself, but such a different more comfortable and happier version that could communicate and manage himself with greater skill.  I asked him how he felt after about 4 weeks, his response “Better than you’ll ever know mum”.   I never had to force him to stick to the diet, he did it voluntarily for years apart from the odd slip up.

To me the changes were so dramatic, he was like a new person, still himself, but different.  I realised after years of battling I couldn’t cope with him reverting, so we didn’t do the challenges. I was sure he was reacting to everything anyway. He stayed on the diet for years, but over time I very slowly reintroduced things.   Every now and then we would slip up, and I’d be scratching my head trying to figure out why I was so cross with him.  Then I’d do my homework and figure out if he’d eaten anything or been to someone else’s place and sure enough I’d find the culprit.  Sometimes it was a well intentions friend’s mother feeding him treats, one time it was a wart patch (made with salicylic acid) that was enough to change his behaviour - Mary

[1587] Autism: “so many improvements in all areas” (January 2021)

My daughter is 18 now. She is salicylate, amine, glutamate, colours, soy, SLS in body care products intolerant and can only do small amounts of lactose free milk and very minimal wheat. She has Autism, ADHD, Depression and anxiety. She was not interested in doing failsafe during her teens because she had to be too different (we did it from when she was 18months). She paid the price!! She has now removed all the offending items from her diet and she has seen so many improvements in all areas. She is not free from autism, ADHD, anxiety - but greatly reduced. She still is on medication but we are optimistic that she will not need it in the near future - or be only very low dose – Cheryl

[1586] ASD: “his defiance, stimming and yelling has reduced significantly” (January 2021)

Master 6. Diagnosed ADHD & ASD. Removed Gluten completely, reduced Sals & Amines (also no preservatives or colours or MSG) and he is a different child.

He can sit still for an entire movie now, and his defiance, stimming and yelling has reduced significantly – Carol

[1585] ASD: “have seen huge improvements” (January 2021)

I have a gorgeous 5 year old son who is ASD and also has had a lot of very aggressive meltdowns. My close friend Debbie recommended I look at his diet and specifically amines, salicylates and glutamates. I found the courage as it’s been a very tough 6 months with him to finally look at all of this - we are under a dietician and have seen huge improvements with reducing and removing a lot of these foods in his everyday. So much less aggression and better behaviour and communication. When he eats any of these foods I see a nearly instant reaction and negative behaviour.

It is a work in progress and I am using a modified elimination diet. I would highly recommend you looking further into this as you can. I have found Sue Dengate Failsafe group on Facebook to be very helpful and supportive – Brenda

[1584] Autism: “all those pre-failsafe foods caused his autistic traits” (January 2021)

For us gluten, lactose, sal's (salicylates), amines, preservatives, additives, MSG, colours. My son has a hyper-sensitivity. When he was 5 he was diagnosed with autism, mild intellectual disorder & severe language disorder. He originally got an aide due to him being seen as a danger to himself & others. He was always in pain, aggressive outbursts, very difficult behaviour & emotional. When he was 12 I had him assessed again, this is after 5 years of following failsafe (but it took several more years to fine tune). The change was so dramatic that the psych no longer considered him autistic (all those pre-failsafe foods caused his autistic traits). The diet gave him the ability to be able to concentrate, think more clearly & articulate himself & allow his body to heal. Hez now 17, still has to follow the diet, finely balanced with only minor tolerances of a few moderate veg. If he has too much of one thing his speech is greatly affected - jumbled & can't concentrate. But day to day he is really happy, beautifully behaved & in great health. In primary school he had an average of 35 days off school now he might have 1 or 2. It changed his life but it also changed ours. I wish I had understood Failsafe earlier - Annette

Don’t forget, you can search for stories/symptoms or scroll through all current stories 

                                                                                                                                                                                                                              heading7shoppinglist

**WARNING** Kettle chips are not failsafe as they are brushed, not peeled. This leaves salicylates in the skin – thanks Annabel.

**WARNING** Sakata rice crisps are not failsafe "I just spoke to Sakata customer service and they kindly informed me that all their rice crackers are made with jasmine rice" – thanks Annabel again

Food Intolerance Resources from RPAH at https://www.slhd.nsw.gov.au/rpa/allergy/resources/foodintol/resources.html 

The following resources have been made available on the condition that they are for personal use only and may not be distributed:

  • Elimination Diet shopping guide
  • NSW & ACT butchers
  • Toiletries & Personal care products
  • Medications
  • Nutritional Supplements

NOTE the failsafe shopping lists on www.fedup.com.au is being regularly updated to reflect changes. If using the shopping lists, check for a current date at the bottom of the list.

The failsafe sausages list has been updated again. Please email directly with changes, preferably in the format in the list, This email address is being protected from spambots. You need JavaScript enabled to view it.. People continue to rave about the real flavour of these sausages!

The completely revised and updated Friendly Food from RPAH is now available at $38.00 including post and GST from the Food Intolerance Network store

Friendly Foodsmall

SPECIAL OFFER because it costs no more to post these:

  • Friendly Food (at cost) $38.00 incl postage & GST
  • add Fed Up for only $18.00 (32% discount)
  • add Failsafe Cookbook for only $27.00 (22% discount)
  • add Fed Up and Failsafe Cookbook for only $45.00 (25% discount)
  • add DVD Fed Up with Children's Behaviour for only $14.00 (45% discount)
  • add 'The Set' (Fed Up, Failsafe Cookbook & DVD) for only $60.00 (25% discount)

                                                                                                                                                                                                                    heading8factsheets

Updated story collection on autism (autism, autistic, ASD, spectrum, Aspergers) 52 pages

Factsheets provide science-based access to information on added and natural chemicals, on symptoms and support. See full list of over 100 factsheets and remember that you can use the search function to search all factsheets (Information>Factsheets>Search all factsheets)

Don't forget that there is great collection of short videos to help answer your questions and understand food intolerance.

                                                                                                         heading9support                                                                                  
Thanks for your continuing support of each other!

**WARNING** www.food-intolerance-network.com is a spam website funded by the shadowy “Society for Public Health” about which no information is available. We think it is a food industry spam site and complaints about stealing our name have been unanswered. Use www.realfoodintolerancenetwork.com to find us directly.

A video-graphic introduction to food intolerance from one of our Network members (2 mins): Food intolerances, what are they? Thanks to Steph Aromataris www.stepharomataris.com

Vintrographic

Diet not working as well as you'd hoped? One tiny mistake can make a huge difference. For fine-tuning, see the Checklist of common mistakes. Readers tell us this list is very useful. You can also ask for our Salicylate, Amine and Glutamate mistakes sheets This email address is being protected from spambots. You need JavaScript enabled to view it..

Online support: Sue Dengate facebook group (over 16,000 members, open forum meaning the public can see your posts).

Closed failsafe group https://www.facebook.com/groups/352777968116759/ with over 5,000 members (the public cannot see your posts)
USA facebook group https://www.facebook.com/groups/284241571702972/ Note that this group has just changed its name to Failsafe USA Products.
NZ facebook group https://www.facebook.com/groups/1011400158967643/ (membership preference given to those living in New Zealand)
UK facebook group https://www.facebook.com/groups/380347182034474/ again accessible

twitter-bird-blue-on-whitetweet as @failsafers (note the plural). See all tweets https://twitter.com/failsafers

The Food Intolerance Network website has had over 12 million visits

Dietitians: Remember that we always recommend that people use one of our supportive and experienced dietitians for best results. Do it once and do it properly and then you will know which food intolerances you have and how to manage them. Welcome to Sylke Sedelies, a new dietitian in Berlin, Germany at https://www.fedup.com.au/information/support/failsafe-friendly-dietitians-and-other-health-professionals-overseas who said: “I'd like to say THANK YOU for your valuable, relentless and inspiring work in the field of food intolerance! One cannot overestimate the support - both through information and self-empowerment - that you give to people affected by food intolerances and those caring for people who are affected.”

For failsafe-friendly dietitians, see the regularly updated http://fedup.com.au/information/support/dietitians There is no longer any need to email This email address is being protected from spambots. You need JavaScript enabled to view it. for this list.

Many dietitians are now online and the cost (typically $80 per half hour) can be rebated from most health funds. Ask them when making contact. As one dietitian said, ”I use Coviu which is a video conferencing service developed by the CSIRO for Australian allied health workers. It is encrypted end to end so it has a very high privacy. I can show education videos, share documents, patients can fill out forms for me and I can see them in real time so it is going really well”.

flagDVD

DVD "Fed Up with Children’s Behaviour” has subtitles in six languages. (In PAL format only, not available with subtitles in NTSC format. But NTSC format DVDs are at a reduced price of only $14.50 including postage through the shop on www.fedup.com.au). As a reward for reading this newsletter so thoroughly, the first person to email This email address is being protected from spambots. You need JavaScript enabled to view it. with their mailing address will receive a copy of our DVD free for each issue (only one person have ever claimed this!)

brochureflags flagFinland

Brochures
: are available in many languages
in a printer-friendly format (thanks to Failsafe members for translating!). Email This email address is being protected from spambots. You need JavaScript enabled to view it. if you can help with other languages. Brochure in Chinese. Latest brochure in Finnish.

Newsletters:
All Failsafe Newsletters can be searched and printed. There is a wealth of research, issue discussion, recipes, personal reports and recipes now available in one place. But some of the links are out of date and you must always check current products rather than relying on historical information.

Success story collections: These are the most popular downloads from the website,
organised by symptom and by additive. The latest collection is on violence and aggression (54 pages)
 

The Food Intolerance Network strongly supports the peer-reviewed publication of evidence regarding the effects of salicylates on health, behaviour and learning and acknowledges that more research needs to be published, particularly using dietary salicylates. However the very foundation of science is observation and these observations over many years show an astonishing and convincing range of real symptoms. We hope that they may assist in stimulating further research publication.

Reintroduction guidelines: for people who are extra sensitive, the new RPAH reintroduction guidelines recommend much smaller servings of salicylate and amine containing foods than previously, see reader comment below. Available on request from
This email address is being protected from spambots. You need JavaScript enabled to view it.

Thank you so much for the new RPAH reintroduction recommendations. I now understand why when I tried to ascertain my tolerance levels and did as my dietician recommended (try 1/2 a cup of salicylates) that my symptoms returned very quickly. ½ a cup is 100 times ¼ of a teaspoon, and given my scent problems I’m probably highly sensitive. Now I can try again. - failsafer, NZ

                                                                                                                                                                                                                                                                                                                                      heading10cookscorner

You can always find more recipe ideas at https://www.fedup.com.au/recipes or Failsafe Cookbook

Every failsafer should get the regular newsletter from The Failsafe Table - it is fantastic February - March edition has some lovely Asian-inspired failsafe treats - thanks so much to Rona

99blissballs featuring this Failsafe bliss ball recipe!

Failsafetable

There's a recipe index of ANY Failsafe recipes on ANY blog. So far there are more than 1,000 recipes with great photos and ideas all categorised to make it easy to search  http://pinterest.com/failsafetable/ 

Failsafe Thermomix group with recipes and a place to ask questions etc https://www.facebook.com/groups/139914166142279/

I bought a Thermomix a couple of months ago, and absolutely love it. These machines are totally awesome, so pure and clean, and I truly believe that if we’d had a Thermomix years ago when our son was at his worst, it would have saved us a lot of heartache, as well as time and money - Susan.

And the very useful weekly meal plan website https://mealsplans.wordpress.com/

                                                                                                                                                                                                                                                                                                                                           heading11thanks
Privacy statement about emails and reports: Your email addresses and stories are never shared with anyone without your express permission. Names in stories are often changed to better protect the privacy of those providing them but the original emails are held in a secure location to provide evidence that these are real reports and that express permission to share them has been granted.

The FAILSAFE Newsletter is available free by email. You can subscribe.unsubscribe here https://www.fedup.com.au/join-failsafe-newsletter-subscriber-list-3

Sue Dengate’s books and DVD, failsafe magnifying card  sulphite test strips and ionizing air purifiers are available through the shop on www.fedup.com.au

Special offer for USA and Canada: Random House has taken over distribution of Sue's books in the USA and Canada, but our current warehouse in upstate New York continues to offer special prices until all gone: Go to http://www.bookch.com and search for "Sue Dengate"

18 copies Fed Up Revised and updated at $US12.50
8 copies Failsafe Cookbook Updated at $US22.00
9 copies Fed Up With Children' Behaviour (NTSC format) - DVD at $US14.50

Fed Up and the Failsafe Cookbook are now available as an ebook: www.amazon.com for Kindle, www.dymocks.com.au in ePub version suitable for Tablet PCs, PCs, Macs, Laptops, www.ebooks.com in ePub for digital and iPhone/iPad.

Sue Dengate’s personal story as an ebook only $3.99: Fed Up with Food Intolerance - a personal story 

"Of all your books, your ebook Fed Up with Food Intolerance is my favourite ­ I just couldn’t put it down" - from Fed Up Roadshow 2015

Look inside

coverFUFIthumb

This is the story that helped thousands of parents and adults understand this baffling disorder.

Buy direct at https://store16061019.ecwid.com/
Download a sample for Kindle (.mobi) or for other ereaders (.epub).
Also available through Amazon for Kindle

Disclaimer: the information given is not intended as medical advice. Always consult with your doctor for possible underlying illness. Before beginning dietary investigation, consult a dietician with an interest in food intolerance. Information is drawn from the scientific literature, web research, group members and personal enquiry; while all care is taken, information is not warranted as accurate and the Food Intolerance Network and Sue Dengate cannot be held liable for any errors or omissions.

© Sue Dengate 2021 (text) PO Box 718 WOOLGOOLGA NSW 2456, Australia but material can be reproduced with acknowledgement. Thanks to the many members who have written, phoned and contributed to this newsletter and particularly to Teresa and Tracy for their help with facebook and story collections. Further reading and viewing: Fed Up and The Failsafe Cookbook by Sue Dengate (Random House Australia), Fed Up with Children’s Behaviour (DVD) by Sue Dengate