FOOD INTOLERANCE NETWORK SYMPTOM DISCUSSION

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Behavioural symptoms of Down Syndrome and diet

Reader stories
Scientific references
More information

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Thirty years ago, Dr Ben Feingold wrote that the behavioural component of Down Syndrome and many other disorders may be improved by a diet eliminating certain food additives and natural food chemicals called salicylates. People with Down Syndrome also have a higher than average prevalence of Coeliac Disease, see references below.

Reader stories

[581] Three responses on behavioural effects of Down Syndrome (September 2007)

"A great improvement in my son who has Down Syndrome"

Your books are fantastic and I have noticed a great improvement in my son who has Down Syndrome and was recently diagnosed with ADD. Apparently Ritalin was our next step! This information should be given to all Maternal Health Centres and it would save families a lot of unnecessary arguing and disharmony! - by email

"The low salicylate diet has been a life saver for us with our son who has Down Syndrome"

I have been reading your website for over a year now, after stumbling across the information on sneaky poos.

About 2 years ago our son who is now 11 and has Down Syndrome, began soiling his pants on a daily basis, rarely at school but often up to six times in the evening. I stumbled across some information about Failsafe on a parenting website and when scanning through the fact sheets, found the information on "sneaky poos" It described our situation perfectly. So after reading lots and lots of information on the Fed Up site, we, or should I say "I", along with one extremely sceptical husband, set about reducing salicylates in my son's diet to see if it made any difference. His diet was basically a salicylate feast - spaghetti bolognaise probably 4 -5 times a week, laden with hidden vegetables (mostly zucchini) and followed by a bowl of either grapes, strawberries or cherry tomatoes (that was lunch), peanut butter on toast for breakfast, dinners included tacos, lasagne with hidden high salicylate vegetables, various stir frys with worcestershire, soy, tomato, oyster sauce etc. He was also hugely into fruit salad. As I'm sure you've heard over and over, I thought we were providing him with a really healthy diet and couldn't understand why he would be unwell all the time.

Anyway we took the plunge, and within maybe three days the soiling had ceased and there were no more stomach aches. I was pleased with the results, however my husband still believed it was another of my harebrained ideas until I tested the salicylates about a month later with a huge fruit salad. My son scoffed a bowl after dinner and another for breakfast the following day. And by lunch time the next day we were back to square one. From that day on my husband has been as vigilant as I am. I must admit, I missed all the summer fruits last season, but only having one pair of undies in the wash each day is worth it.

After going low salicylate and cutting out other nasties, we also noticed a definite behavioural improvement in our son. One thing in particular was his change in motivation, especially getting ready for school. Before the diet, I had a daily struggle with him to get dressed, as if he had the choice, he would stay home every day. After getting strict with his food, he started to just take his clothes from me and say "thanks mum" and next thing he would be dressed.

On the strict diet, he seems to be so much more agreeable and able to be redirected or reasoned with. He used to lose his temper regularly especially with our older son. Now, instead of losing his temper, he will asking calmly for help - like to find a DVD or figure out which remote he needed to change channels. His school teachers have commented on how well he concentrates this year, they were unaware that we had made any changes to his diet. The teachers have also commented that he no longer acts the fool to gain attention, and is much happier to sit and do school work, and be like everyone else.

I have also discovered that he is intolerant of MSG. He used to be addicted to corn chips, we cut those out early on in our failsafe journey. When he later ate other flavoured chips I noticed every time he had them he would cough continually for several minutes. At first I thought he was choking on the chips, as he sometimes has trouble swallowing but then it clicked - it was basically MSG causing an asthma attack.

The low salicylate diet has been a life saver for us with our son. I am a huge fan of failsafe!!! - by email

“Low salicylate diet for DS”

I have a friend who is into failsafe also, she has a 2-year-old with Down Syndrome on a low salicylate diet. Behaviour can be a definite challenge when it comes to DS and I'm sure most families never suspect food intolerance as a contributing factor. - by email

[We would welcome more stories about DS; to the woman in Western Australia whose DS son is both failsafe and coeliac, I'm sorry, I lost your story in a computer crash, could you send it again please - Sue]

What the medical journals say

• Feingold BF. Dietary management of nystagmus. J Neural Transm. 1979;45(2):107-15.

Dr Feingold proposed that 'a variety of neurologic and neuromuscular disturbances (grand mal, petit mal, psychomotor seizures; La Tourette syndrome; autism; retardation; the behevioral component of Down's syndrome; and oculomotor disturbances)' may be induced by food chemicals such as artificial colours and flavours, synthetic antioxidants, preservatives and foods containing the salicylate radical 'depending upon the individual's genetic profile and the interaction with other environmental factors'.

• Zachor DA and others, Prevalence of celiac disease in Down syndrome in the United States. Pediatr Gastroenterol Nutr. 2000;31(3):275-9.

Numerous studies in Europe have documented a high prevalence of celiac disease in Down syndrome. In a study of 75 patients with Down syndrome in southeastern United States using immunoglobulin (Ig)A-anti antiendomysium antibodies and IgA-antigliadin antibodies, researchers found 1 in 14 cases had celiac disease, compared to 1 in a hundred in the general population. The authors recommended screening for all children with Down syndrome, even if there are no gastrointestinal symptoms.

Further reading

Introduction to food intolerance

The diet recommended on this website is the Royal Prince Alfred Hospital (RPAH) elimination diet which is free of colours, preservatives, synthetic antioxidants and flavour enhancers; low in salicylates, amines and natural glutamates; and avoids perfumed products. See how to start failsafe eating.

www.fedup.com.au

The information given is not intended as medical advice. Always consult with your doctor for underlying illness. Before beginning dietary investigation, consult a dietician with an interest in food intolerance. You can see our list of experienced and supportive dietitians http://fedup.com.au/information/support/dietitians 

© Sue Dengate update September 2007

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