Fedup Newsletters

FAILSAFE #29

Newsletter of the Food Intolerance Network

November - December 2001

FAILSAFE supports families using the low-chemical elimination diet recommended by the Australian Royal Prince Alfred Hospital - free of additives, low in salicylates, amines and flavour enhancers - for health, behaviour and learning problems.

The FAILSAFE Newsletter is now available free by email. Just send your email address to This email address is being protected from spambots. You need JavaScript enabled to view it.

THIS MONTH

Hello everyone

Since the last newsletter I have been on a tour of Tasmania which lived up to its clean and green image from the moment I stepped off the plane to smell the fresh, sweet air. It's perfect holiday destination - friendly people, fantastic scenery, historic buildings and fresh seafood, see Tasmanian report below.

Ever wondered about the best gift for a failsafer? A failsafe family visiting Darwin recently borrowed my kitchen for a day to replenish their biscuit and muffin barrel. As a thank-you, they baked a load of home-baked failsafe goodies for my daughter in another city. She came home to find her fridge full of butterscotch biscuits, home-made butterscotch, and caramel muffins (see recipe). She was delighted!

And on a different topic, if you've sent me an unanswered email, please try again. There are always some with an undeliverable error message. Include your phone number so I can contact you if necessary.

- cheers, Sue Dengate (This email address is being protected from spambots. You need JavaScript enabled to view it.)

PRESERVATIVE WARNING

A warning about mercury in vaccinations from the Institute of Medicine comes just five months after a report from the same institute that there was no evidence for a connection between autism and the MMR vaccine. A panel of experts in Washington DC now say it is "biologically plausible" that thimerosal, a mercury-based preservative in some vaccines, could cause developmental disorders.

While the US began to phase out mercury in childhood vaccines two years ago, it has not forced hospitals to replace their existing stocks. The preservative is still used in the flu vaccine and some eye drops and nasal sprays. According to the NSW Department of Health, as of July 2000 almost all vaccines currently administered to young children in NSW are now thimerosal-free (brand name Thiomersal). Check with your doctor.

Parent groups are particularly concerned about late-onset autism, a relatively new disorder. Children typically develop normally until they receive their DPT or MMR shots then stop talking and interacting with people and develop autistic symptoms such as toe-walking, headbanging and arm-flapping. The first lawsuit regarding thimerosal and autism was launched on 28th March this year in Austin, Texas, see www.safeminds.org. Further reading: Failsafe #23, New Scientist 5/5/01 p7 and 10/10/01 p17.

FOOD AND GROCERY COUNCIL "MYTHS"

A report from the Food and Grocery Council aims to debunk common food myths. According to them, food additives are good for you, MSG is not a problem because it is natural, and there is no truth in the myth that additives like red food colouring cause children's bad behaviour. It's just that children drink these things at birthday parties and behave like, well, children. They're really just having fun. I have spoken to a number of people (not necessarily failsafers) who were completely outraged by the report. Our best way to fight back is to keep spreading the word. Many thanks to failsafers who have written to newspapers or magazines to raise awareness, others have sent me cuttings (see readers reports) so it is obviously working. Remember you can write as "name and address supplied" to keep your privacy. If your family has a story about food additives for television you can write to A Current Affair (This email address is being protected from spambots. You need JavaScript enabled to view it.).

BROCHURES

At last, the new, updated brochures are available on "Behaviour, health and learning problems in children can be caused by common foods" and Oppositional defiance". Sorry about the delay. Mark your requests "brochures" on the subject line.

Research

THE SOYMILK CONTROVERSY - for

Soy formulas for babies have been given the thumbs up in a new long-term study from the University of Pennsylvania. Since infants fed solely on soy formula receive high levels of phytoestrogens during a vulnerable stage of development, permanent effects are theoretically possible. Researchers questioned 800 young adults who had been fed soy formula or cows milk formula. They found no differences for 30 outcomes including the timing or nature of their physical development, onset of menstruation, hormonal problems, sexual orientation or education. The only different was a slightly longer menstrual cycle and more menstrual discomfort in some women. "Our findings are reassuring about the safety of infant soy formula", they concluded. Strom and others, Exposure to soy-based formula in infancy and endocrinological and reproductive outcomes in young adulthood. JAMA 2001 Aug 15;286(7):807-14

- against

Reader story:"I have had a bad experience with soy milk. After showing up intolerant to cow's milk on a blood test I went onto soymilk, which I used like cow's milk. After a couple of months of this I ended up with a disturbed menstrual cycle and very sore breasts. A blood test showed elevated oestrogen levels. My doctor has seen a few women like me from using soy. [1-2 glasses of So Natural soymilk per day. So Natural's advertising material regards it as a benefit that their soymilk is high in natural phytoestrogens.]

- undecided

In a review of the risks and benefits of soymilk called "What We Still Don't Know about Soy", doctors from Harvard Medical School urge a cautious approach. Benefits investigated include lowering cholesterol (small benefits found), easing menopausal symptoms (slight benefits found), protecting bone (some small benefits found), protective against breast cancer (undecided). Risks investigated include decline in cognitive function (some cognitive decline found in some Japanese men 30 years after eating a high tofu diet), possible reproductive tract changes (as investigated in the study above, no changes found), thyroid dysfunction (no changes found), and allergies (soy is one of the eight food groups most often responsible for allergic reactions).

Read the report for yourself at http://www.cspinet.org/nah/soy/soy.html

KIDS MISSING OUT ON FRUIT AND VEG

We failsafers are often accused of denying our children the full range of fruit and veges, but how do they compare to other kids? According to a recent survey, my teenagers would have been among the 20% of children - and only 6% of 16-18 year olds - who eat an adequate amount of fruit and vegetables.

About 3000 children aged 2-18 were questioned. One-quarter did not eat fruit and one-fifth did not eat vegetables on the day of the survey. "If fruit juice was excluded, 40 per cent of all participants and 60 percent of the 16-18 year olds had no fruit," researchers said. There was also a worrying lack of variety in vegetables. Potato was the most popular, and much of it was consumed in fried form. Reference: Australian Doctor, 25/5/01.

PRODUCTS

Failsafe sausages now available in Brisbane Rode Meats, Bi-Lo Shopping Centre, Cnr Rode Road and Appleby Road CHERMSIDE WEST, Phone: 3359 7425. If you want them fresh, contact them about reserving you some, so you can then freeze them yourself in quantities that suit you. Otherwise, they will be available frozen in 1kg lots at $6.99 per kg. Organised by the new Brisbane FI group, phone Jan, 07 3264 4265.

Fish should be white, fresh, and eaten within 12 hours of being caught or frozen immediately and eaten within 2 weeks. Woolworths at Nightcliff, Darwin get big deliveries of fresh fish on Tuesdays and Saturdays, from both Cairns and Darwin. Fish from Cairns is likely to be much fresher because fish in Darwin has usually spent 10-14 days on ice coming in from the fishing grounds, whereas fishing boats in Cairns come in every day.

Diet not working as well as you'd hoped?

One tiny mistake can make a huge difference. For fine-tuning, see the updated list on the website Checklist of common mistakes. Also new guidelines for extra sensitive amine responders, thanks to Alison and Karl from the email discussion group.

Readers tell us this list is very useful.

Readers' comments

Food chemicals can affect everyone from fully breastfed babies to senior citizens with an astonishing range of distressing effects. Thank you for your reports and comments. See summaries below with more details and extra reports on the website.

"I am getting SO MUCH out of the Failsafe email group. Often I don't even have to ask the question as others are already talking about it." - reader, Adelaide

"This whole process is made so much easier by having the group to bounce ideas off or ask questions about the million and one things that come up in the course of 're-learning' " - reader, WA

FI in adults

"Almost all the enquiries I get are about adult diseases. I have had reports of people with Lupus improving greatly and people with late onset diabetes having their doctor stop their insulin. Adult problems seem to be far worse because of the many years of damage. One doctor told me that in the next year or two he thought local GPs would be looking at food as a cause of chronic disease." - Bernard Trudgett (Bernard leads Illawarra FI support group. His specialty is FI and arthritis, phone 02 4229 8595)

"I am an early childhood nurse …"

"By 5 months our daughter Rosie was really quite miserable, irritable, constantly grizzling and wanting to be held (except of course when we went out anywhere, where she played the cute, smiley happy babe). Sometimes she seemed to be in pain, and we gave panadol with some relief for only a short time. We tried the reflux, colic, etc avenues, with no improvement. I am an early childhood nurse, and had great support from my two wonderful colleagues, one saw her in a really sad state when visiting us at home. We had tried me off all dairy products at 5 1/2 months, as she was fully breastfed. That seemed to improve things a bit, but I still felt that babies should be happy, unless they had good reason not to be. Then I read your article called "Restless babies", in the Nursing Mothers Magazine [see Restless Babies article on website]. I felt the article was about us!! It was the start of a big change in our lives. We saw our local dietitian who gave us the booklets from RPAH, and discussed it. As I was breastfeeding, and she was on some solids, Rosie and I started the elimination diet when she was 7 long months old. My very supportive husband was quite skeptical, she was such a beautiful fat healthy looking babe, how could it be diet related?? Anyway after only 3 full days on the diet, he was very apologetic for his skepticism. Our little girl was significantly happier, and so were we." - Cath, by email ( - see the full and moving story on the website under stories).

Constipation and salicylates

"Our daughter is salicylate intolerant, which means that most fruit and vegetables upset her system, with constipation being just one of the effects. This may be hard to believe, as it is contrary to what we all think, but for some individuals, an apple a day or a fresh fruit salad, is not a good idea at all." - from a reader's letter in the Coffs Harbour Advocate

Food-induced tonsillitis

"I just wanted to says "thanks" on behalf of my family. My wife discovered our daughter's salicylate intolerance after serendipitously finding and buying Fed Up 3 years ago. It's not easy to stick to the diet, as you will know, but it's definitely worth it for the difference. If only some of our friends and family had the willpower required.

A curiosity for us was our daughter's apparent intolerance to garlic oil capsules. She was taking them for a year or so, to supplement her limited diet, and in that time, suffered repeated attacks of tonsillitis, to the extent that the ENT surgeon had scheduled her for surgery. Then we stopped the garlic supplement, and the tonsillitis disappeared. That was 18 months ago and she's been fine since. Very odd.

Keep up the good work. Many people worry about the possible problems associated with GM foods but are happy to let their kids drink something that looks like anti-freeze; taking all the junk out of what we eat would be a better first step in the right direction. Tim Tams? You can keep 'em!" - father, by email

Rather than outright "reactions", these effects crept up on us

"We have just tried our first challenge (amines) and it was a disaster. Rather than noticing outright "reactions" as such, we noticed that everyone was yelling more. The kids were doing things which they knew they would cause big trouble - such as knocking a hole in the back fence so they could see better - but it still didn't make them stop and think first. These effects crept up on us until we realised that things were as they had been pre-diet.

One of the best things I have found is to have a mindset of "eat as your grandparents did" and this is handy to remember when you go shopping as well. As Sue says in her book these food additives were fairly rare in our grandparents generation, as was the incidence of ADHD etc.

Also invaluable is a notebook of some sort (I have one of those ones which is divided into 5 sections so everyone has their own notes) and jot EVERYTHING down, even if it seems irrelevant at the time. You may see a pattern emerge later on. Keep notes on what you ate and drank, how you feel, how the kids are moodwise and behaviourwise. This is better than trying to rely on your memory.

Last of all, when things get on top off you, find a quiet spot, have a little cry, give the kids a hug, and tell them you love them!" - Connie, discussion group

Swimming against the tide

"I wish I knew all of this about food some thirty years ago after so many misdiagnoses and painful experiences. The cost to me has been huge and I think it will take a while before I can emotionally deal with the shame I still feel at always having been told (and came to believe) that I was just a nut! Failsafe for me isn't just about getting my health back - it's about getting my life back after all these years. To say I am inspired by the parents who are fighting for their children's rights to be healthy is an understatement. I recognise the very real future scenarios that they are preventing for their children in taking these actions. Bless them and people such as yourself that are providing such necessary assistance and swimming against the tide to do so." - reader, Adelaide

What parents go through - the Camphor Laurel story

The elimination diet was just the beginning for Jesse Patch, aged 6, from northern NSW. His behaviour improved dramatically but his parents soon noticed strong reactions to cleaners and other chemicals. Because of his extreme sensitivity, Jesse was referred to the RPA clinic and diagnosed with MCI (Multiple Chemical Intolerance). Then some camphor laurels trees were cut down at Jesse's school. Camphor laurels are strong-smelling trees which grow like weeds in that area. Jesse reacted badly to the smell of the woodchips. The school refused to believe it was anything other than a parenting problem. As a result, Jesse must now stay at home to do his schooling. Read David Patch's compelling letter on the website under Reader Stories.

READERS' STORIES at http://fedup.com.au/success-stories/current-stories

Your questions:

Check out the Questions and Answers section in the website with detailed answers to your questions:

Q. I'd like to write a book about my experiences. Any hints?

A. Writing is time-consuming and poorly paid. The Australian Society of Authors (www.asauthors.org ) calculate that authors are paid less per hour than any other occupational group including fruit-pickers. Publishing houses pocket 90% of the RRP, so the author gets $2 for a $20 book. You can make a profit if you self-publish, but publishing houses get bigger distribution and so spread the word much better. Only about 1% of manuscripts submitted to publishers are accepted. See the Writers and Artists Yearbook in your library for information about publishers.

Q. What exactly are those kids eating on the cover of the Failsafe Cookbook?

A. It was a ham and tomato roll - not failsafe, but it's a great photo. So I asked the graphic artist to change the ham into chicken and the tomato into beetroot which is moderate in salicylates. I would prefer the lettuce to be iceberg but you can't have everything.

Q. What's in Coke? I'm addicted to it and I'm sure it's bad for me.

A. See answer in updated FAQ file on the website.

Q. Help. Where do I start?

A. This is definitely the most frequently asked question. Write down everything your child normally eats in a day. Now check whether they are failsafe by going the list of failsafe foods (in the booklet from your dietitian, also page 206 Fed Up, page 195 FS Cookbook) or the recipes. If not, write down a substitute for each food. For example, breakfast: Nutrigrain. Not failsafe. Use Rice Bubbles or rolled oats instead. Raw sugar. Not failsafe. Use white sugar instead. Milk. Decide whether you will include milk or not (eg if frequent ear infections, switch to Vitasoy Calciplus). Toast. Read label on bread and switch to preservative-free bread. Margarine. Read label and switch to Nuttelex … If you have the FS Cookbook, read "How to Start" on page 18 and the Checklist of Common Mistakes on page 207 (or on the website). Any questions, join the discussion group, phone your local contact, or email me for support. See the full answer and others in FAQs on the website.

Around the groups:

Tasmanian report

Tasmanians showed strong interest in food intolerance. There were supportive dietitians or childcare nurses at every talk I gave, even a couple of GPs and of course, plenty of parents and others with FI. As always, it was lovely to meet so many readers and discussion group members.

The good news about food in Tasmania: lots of wonderful fresh seafood. At Captains Catch in St Helens, I asked "has it been frozen?" The reply "I never sell fish which has been frozen". But at Mures on Constitution Dock in Hobart where I had Tasmania's icon fish trevalla, they confessed it would normally have been frozen so make sure to ask, which is the freshest fish? And has it been frozen?

The bad news: it is very difficult to find preservative-free bread. Helga's is OK for some people but not failsafe because of the vinegar. Noble Rise contains whey powder (which is natural 282). Still checking on Banjo's - don't take the sales assistant's word for it, ask to see the label on the packet of premix. Your best bet is Woolworths instore bakery bread labelled without preservatives, Pritikin if you can manage wholemeal bread - some failsafers can't - and Laucke's premix for breadmakers.

Failsafe contacts (all can recommend sympathetic dietitians, advise about bread and failsafe sausages and some are organising meetings):

Hobart, Jean, phone 03 6243 8307

Launceston, Megan phone 03 6382 2561

Burnie, Caroline, phone 03 6432 3223 (Caroline belongs to the allergy association FACTS which already runs regular meetings but is interested in catering for failsafers as well)

St Helens, Robin 03 6376 1905, Cathy 03 6376 1959

Group news

Our phone contacts and support groups all operate in different ways. They range from people who have just got through their elimination and challenges to experts who have been doing it for years. Most people can recommend the name of a supportive dietitian or provide support themselves. They can usually tell you where to buy failsafe sausages and bread.

Some groups run occasional meetings, such as Jenny's failsafe get-togethers in the Melbourne Botanic Gardens.

Others have several meetings planned in advance, like the new Brisbane group (first meeting Tuesday 27th November, Zillmere PCYC, 9.30 am - this group is also planning to show the 123 Magic video at one of their meetings, phone Jan 07 3264 4265).

Darwin group has an information night with Sue Dengate on Tuesday 13th November 7.30 pm At Essington, phone Deb 8932 1520, Also starting fortnightly chat meetings, children welcome, (first one Saturday 17th November, 10 am, phone Erica 8927 0121).

Bernard of the Illawarra group gives scheduled talks (and see readers reports).

Others like the Auckland group with Linda and the FACTS group in Burnie have regular meetings, Susan from Yenda mails out a hard-copy newsletter, see contact list on website.

Cooks' corner

Hints:

* Add citric acid to a packet of Kettle chips and toss for a salt and vinegar flavour - Carlia Miles

* For a different flavour, use brown sugar instead of white in Margie's Lunchbox muffins, FS Cookbook p132. - Howard Dengate

* Birgit's pear ketchup keeps best in the freezer. It is so soft you can use it while frozen. - Sue Dengate

* To have fresh gf muffins for breakfast, I put all the dry ingredients in my food processor at night, then add the wet ingredients first thing in the morning. - Erica Waite

Margarine

1 cup sunflower oil

1 tsp liquid lecithin

1 cup cold water

Pour a little of the water into a blender, then add oil and lecithin. Blend briefly on high speed while adding the rest of the water. Store in refrigerator and use within 2-3 weeks. Variation: for a very rich cream substitute, add 1 tbsp maple syrup and 2 tsp carob powder. - Margie Turner

Hot chicken rolls

Split preservative-free bread roll in half but not quite all the way through. Spread thickly with failsafe mayonnaise, Birgit's pear ketchup, or pear puree and fill with sliced, cooked chicken. Wrap roll in plastic wrap and microwave on High for 20 seconds. - Margie Turner

Caramel cakes

125 gms butter (Nuttelex)

1 cup brown sugar

2 eggs

1 tablespoon golden syrup

1 cup S.R. flour

1/2 cup plain flour (I use 1 1/2 cups Debs G.F. flour)

1/2 cup milk (rice or soy)

Cream butter and sugar, stir in eggs and golden syrup and beat until combined. Fold in sifted flour alternatively with milk. Spread in Gladbake lined 20cm tin or patty pans. bake 50-60 mins or 20mins respectively. Cool on racks and ice.

Caramel icing. Melt 60 gms butter (Nuttelex) in a saucepan and stir in 1/2 cup brown sugar. Stir till sugar dissolves and add 1/4 cup milk (rice or soy). Leave till cold. Add enough of this mixture to 1 cup of icing sugar to make a spreadable consistency. Left over butter mixture can be stored in the fridge till next time and reheated in the microwave before adding to icing sugar. - Andra Somerville

Toffee Bark

Sprinkle 1/2 cup sugar evenly over a lightly greased baking tray lined with foil and place under a hot grill. Cook until sugar is dissolved and is a dark caramel colour. Turn the grill tray as it cooks to dissolve sugar evenly. Leave until completely cold and then break into pieces. Make 1-2 days ahead. Store in an airtight container in a cool, dry place. - Margie Turner

The FAILSAFE Discussion Group : On-going support is the key to success with FAILSAFE eating. Access the wealth of experience and information in this free email group and share recipes and stories with people from around the world, particularly from Australia, New Zealand, South-East Asia and USA. You will receive a daily digest of all emails, or choose individual emails if you want, and can respond to individuals or the group by email or over the web. There is also an on-line chat facility. Subscribe: This email address is being protected from spambots. You need JavaScript enabled to view it. Frontpage: http://groups.yahoo.com/group/failsafe

The FAILSAFE Newsletter: You can have this Newsletter emailed to you for free about every two months, and also see it on this website. Subscribe: This email address is being protected from spambots. You need JavaScript enabled to view it. Frontpage: http://groups.yahoo.com/group/failsafe_newsletter

© Sue Dengate (text) PO Box 85 Parap NT 0804, Australia. This email address is being protected from spambots. You need JavaScript enabled to view it. Thanks to Amanda, Lois, Veronica, Megan, Roz, Marie, Tammy, Louisa, Robyn, Cathy, Dorothy, Tammy, Louisa, Janet, the Playgroup Association and the Asthma Foundation Tasmania, and the many, many others who helped to make my Tasmanian tour such a success. Further reading: The Simplified Elimination Diet from dietitians, Fed Up and the Failsafe Cookbook by Sue Dengate Random House, and Friendly Food, by Swain and others, Murdoch Books.