Can Diet Affect Autism: overview of GI symptoms

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Can Diet Affect Autismoverview of GI symptoms
the role of dietary interventions

• Ann Le Couteur
• 21 October 2008

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• A lot of children with autism have GI problems
  such as constipation diarrhoea. Whether these
  problems are related to brain development is open
  to question
• There are neurotransmitters neuroreceptors in
  the gut that correspond with those in the brain.
• There are some scientific reasons to think that
  some kids may benefit from this (GFCF) diet.
• Loveland, Uniy of Texas, Houston 2008

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Can Diet Affect Autism

• Background
• Autism ASD
• Parents Professional experience with dietary
  interventions in autism
• Current practice
• Assessment Intervention planning
• Research evidence to date
• Gluten Free Casein Free Diet
• Can Diet Affect Autism (CANDAA) UK consortium
• Questions discussion

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Autism Autism Spectrum Disorder (ASD)

• Lifelong persistent difficulties
• Communication Social interactions
• Restricted, repetitive stereotyped behaviours
• Additional co-morbidities
• High rates of co existing problems- sensory
  difficulties, sleep, eating and behaviour and
  mental health problems (such as anxiety)

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Autism Autism Spectrum Disorder (ASD)

• Benefits of early intervention for ASD
• Behavioural educational
• Parent- child treatment programmes
• Wide range of interventions in use- no one
  approach dominant
• Evaluation of Specific Bio-medical Interventions,
  Co-morbidities Ongoing Needs
• Untested treatments

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2005 NAS Survey

• The Subjects
• Number 1,564
• Gender 80 male 20 female
• Age range 1 year 65 years
• Age 0-16 years 1,084
• Age 17 years 480
• NOT A PREVALENCE STUDY

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Co-existing conditions
Most frequently reported

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Interventions cited (in alphabetical order)

• ABA (Lovaas )
• AIT
• Allergy treatments
• Behavioural Programme (other)
• Bliss symbols
• Bowen technique
• CBT
• Computers
• Delacato
• Diets and supplements
• Early Bird
• Educational (specialist)
• Holistic methods
• Intensive interaction
• Makaton
• Medication

• Mortlock (John) technique
• Music Therapy
• Naturalistic treatments
• Oxygen therapy
• PECS
• Physiotherapy
• Sensory Therapies
• Social Skills training
• Social Stories
• Son-Rise
• Sound and Light Therapy
• Speech Language Therapy
• Statement of SEN
• TEACCH

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Interventions reported effects

Diets
worse
sig. better
no change
used
better
sig. worse
NK
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Suggested priority topics for future intervention
research

• AS
• Biomedical diets etc (11.7)
• Early diagnosis (8.9)
• Misc intervns (8.5)
• Approp adult care (8.3)
• Profess training (7.7)
• Coping/ indep (7.5)
• Education (7.5)

• Autism
• Biomedical diets etc (10)
• Causes (10)
• Diagnosis (9)
• Behaviour (9)
• Genetics (8.8)
• Misc. Interventions (8.1)
• Communication (8)

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Summary of Survey findings

• High rates of co existing problems, especially
  anxiety, sensory difficulties, sleep, eating and
  behaviour problems
• Wide range of interventions in use- no one
  approach dominant
• Relatively low level of GI and allergy
  involvement
• High take up and strong interest in biomedical
  interventions, especially diets

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Feeding/eating problems in ASD

• Selective/ faddy eating (Arnold et al, 2003
  Schreck et al, 20042006)
• Restrictive eaters/ restricted diet (Hediger et
  al, 2007 Early history of FTT Keen, 2007 ?L/T
  outcome)
• Nutritional status (Arnold et al, 2003 Cornish
  2002)
• Excessive weight gain (Curtin et al 2005)
• Impact on multidisciplinary working (Bower, 2002
  Keen, 2007) Family Care Plans and resources for
  families professionals
• BAMBI (Lukens Linscheid 2008)
• Brief Autism Mealtime Behaviour Inventory

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Eating as example of effect of ASD contributing
factors for problems

• Sensory sensitivities, small, texture
• Exaggerated normal neophobia leading to
  selectivity
• Food not a motivator
• Slow eating (slow processing)
• Desire for sameness cog style persev. behvs
• Underlying issues? Other co-morbidities
• Hard to treat? Need ASD expetise
• How to motivate for poss change?! Who to involve?

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GI Issues ASD

• Parent reported GI problems
• constipation diarrhoea excessive wind abdo
  pain
• Hovarth, 1999
• stated unrecog. GI disorders may contrib to behav
  probs in non-verbal children
• Black et al, 2002.UK GP Research database.
• Cs with autism no more likely to have defined GI
  disorder than cs without autism (9)
• Molloy Manning-Courtney, 2003
• Chronic GI symptoms
• Coeliac disease
• McCarthy Coleman, 1979 Barcia et al, 2008
  reported 3.3 in cs with PDD (with or wout GI
  symptoms)

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GI Issues ASD

• GI symptoms in children with PDD (Nikolov et al
  2008)
• 172 children
• Research Units on Paediatric Psychopharmacology
  (RUPP) Autism Network
• 23 pos for GI symptoms
• Mainly diarrhoea constipation
• No diffs from subjects without GI symptoms
• BUT gter probs with irritability, anxiety
  social withdrawl
• AND less likely to respond to treatment

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GI Issues ASD

• Published proposedGI probs as poss aetiologies
  in ASD
• Constipation (Afzal et al 2003)
• Autistic enterocolitis(Wakefield et al, 2005)
• Ileo-colonic lymphoid nodular hyperplasia (LNH)
• Gut permeability (DEufemia et al, 1996Cade et
  al 2000 Reicheldt et al, 1999 Shattock et al
  1990)
• Intestinal flora (Finegold et al, 2002Parracho
  et al 2005)
• Erickson et al 2005 recent review article

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Nutritional or metabolic abnormalities in ASD

• Sulphation (Alberti, 1999)
• Zinc (unpub. data)
• Urinary peptides (the Sunderland protocol)
• Iron (Chakrabarti et al 2001 ADHDKonofal et al,
  20042005)
• Magnesium (Strambi et al, 2006)
• Essential fatty acids (Bell et al, 2004)
• Plasma amino acids (Aldred etal, 2003 Arnold et
  al, 2003)
• Increased vulnerability to oxidative stress dec
  methylation (James et al, 2004)
• Vitamin B6 (Adams et al, 2006)

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Therapeutic Diets in ASDDietary manipulation

• Exclusion of gluten and casein (GFCF diet)
• Exclusion of phenolic compounds salycilates
• Exclusion of various food additives
• Aspartame MSG artificial food colourings
  benzoate preservatives (McCann et al 2007)
• Yeast free diet with antifungal treatment
  (Shaw,1998)
• (Chelation therapy)

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Therapeutic Diets in ASDother dietary
manipulation

• Ketogenic diet (Evangeliou et al, 2003)
• Feingold diet
• Rotation diets (3-5 day rotation)
• The body ecology diet
• The specific carbohydrate diet
• Fasting (OBanion et al 1978)

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Therapeutic supplementation

• B6 magnesium (Findling et al, 1997Nye Brice
  Cochrane review, 2005FSA warning 2003)
• Vitamin C (Dolske et al, 1993)
• Vitamin A ( two case reports Megson et al, 2000)
• Dimethylglycine (DMG) XXX (Bolman
  Richmond,1999Kern,2001)
• Multivitamin mineral supplementation (Adams
  Holloway, pilot study 2004)
• Fish oil and other fat supplements (Richardson et
  al, 2000 2002 2005Amminger et al, 2007)
• Probiotics Enzymes intravenous secretin
  (Williams et al, Cochrane review, 2005)
  Micronutrient supplements

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Summary of evidence for use of therapeutic diets

• No dietary interventions have adequate evidence
  base
• Improvements are seen in some children
• Supervised trials may be advised in some cases
• N.B. impact on multidisciplinary working (Bower,
  2002 Keen, 2007)
• Family Care Plans and resources for families
  professionals
• Co-morbid mental health problems

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Le Couteur et al (2003)
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NAP-C recommendations

• History
• Diet, eating, bowel bladder, sleeping. Poss.
  history of epilepsy
• Physical examination
• incl full neurological exam.
• in response to clinical indicators
• Further investigations in some
• FBC film for iron deficiency anaemia on dietary
  suspicion
• Metabolic investigations based on clinical
  concerns

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Diet and autism

• leaky gut theory doubted
• Evidence suggests that the diet does have a
  beneficial effects for a proportion of those with
  autism, many of whom suffer from bowel problems
• Science aside, food therapy for autism has
  support

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Gluten free casein free (GFCF) diet autism

• Gluten is a protein in wheat
• Casein whey are proteins in milk
• Gliadomorphin, a peptide in gluten casomorphin
  (a peptide in milk) thought to be related to
  behavioural changes in children with autism

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Current experiences with GFCF diets

• Families
• Alice has been on a GFCF diet for three months
  now. It is working extremely well.starting the
  diet was a bit daunting at first a parents view

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www.researchautism.net GFCF diet (March, 2008)

• The theory behind this diet is weak and unproven.
  And there is limited evidence as to whether GFCF
  diets are actually effective.
• Reviewers have found the evidence to be
  inconclusive. Despite this lack of evidence many
  people embark on a GFCF diet with high
  expectations that there will be beneficial
  effects.
• However, these diets can involve significant
  inconvenience and cost, as well as significant
  limitations on what the individual can eat.
• Because of this, we cannot recommend the use of
  such diets.
• However we do strongly recommend that that
  further large scale, high quality research is
  needed.

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Cochrane Systematic Review of GFCF diets (2005)

• Some reports that peptides from gluten casein
  may have a role in the origins of autism ? poss.
  explanation of abnormalities in autism
• Knivsberg et al (2002) small single blind
  randomised study of 10 matched prs. of children
  at 1 yr. follow up using parent report (DIPAD- a
  Danish observation scheme)
• Elder et al (2006) 13children (2-16yrs). Reg diet
  vs GFCF diet, food provided from res kitchen for
  12 weeks
• US ongoing studies Hyman et al (NIMH, 2008)
• UT Houston (08.08) will recruit 38 autistic
  children (3-9 years) via paed gastroenterology,
  to investigate gut permeability, urine
  psychometric testing
• Need for large scale, good quality RCTs

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GFCF diets current situation

• Scientific underpinning for GFCF diet is weak
• Mechanism for the absorption of these substances
  is unknown
• Few studies and findings not replicated
• Reports of use of GFCF diets increasing
• Numbers of parents requesting information about
  GFCF diets also increasing
• Need for large scale good quality randomised
  controlled trial of the impact of GFCF diets

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Development of a UK collaboration to evaluate
GFCF diets in autism

• Consortium of 3 UK autism clinical/ academic
  research sites
• Working with local parent groups and national
  voluntary support groups
• Support of child health professionals
• Using experience of research colleagues experts
  (UK international)

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UK Community Paediatric survey 2005

• Postal questionnaire (RCPCH BACCH members)
• First 150 replies
• Majority do not initiate recommendation of a GFCF
  diet
• 86, if parents requested to implement GFCF diet
  would support parents and make referral to
  paediatric dietitian
• Majority wd welcome use findings from an RCT
  that provided an evidence base to strengthen the
  advice they provide to families

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Paediatric dietitians consensus statement 2003

• A GFCF diet should not be recommended as a
  treatment for people with ASD. However a
  dietitian should provide support for those who
  wish to embark on a dietary trial
• Lack of resources
• Long waiting lists
• Some services recommend not to accept such
  referrals
• Reports of families undertaking GFCF diets
  without paediatric dietetic support

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Both surveys indicate

• Increased workload for Child Health staff working
  with young children
• Lack of additional funding for this considerable
  additional workload
• GFCF diets are expensive not available on
  prescription ( some exceptions)
• Need for large scale good quality randomised
  controlled trial of the impact of GFCF diets in
  individuals with autism

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Development of a UK collaboration to evaluate
GFCF diets in autism

• Consortium of 3 UK autism clinical/ academic
  research sites
• Working with local parent groups and national
  voluntary support groups
• Support of child health professionals
• Using experience of research colleagues experts
  (UK international)

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Development of a UK collaboration to evaluate
GFCF diets in autism

• Proposal for a randomised controlled trial (RCT)
  to investigate the impact of a GFCF diet on
  pre-school children with autism
• CANDAA Can Diet Affect children with Autism
• Why an RCT?
• Controls for known unknown variables impacting
  on outcome
• acceptable to families those professionals
  supporting them
• meet criteria for potential research funders

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CANDAA preparation studies

• Urinary peptide study (Cass et al, 2008)
• Case-control study
• 65 boys (5-11 yrs) autism 158 boys (4-11)
• No sign diffs HPLC urinary profiles
• No evid of any urinary peptiduria in children
  with autism
• Primary outcome measure (s)
• Wellbeing in Autism Index (WIAI)
• Test Foods Development Study

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Test Foods Development Study (TFDS)

• Work with Heron Quality Foods
• Production of Test foods
• Range of GFCF products (cookie crispy bar
  muffin porridge pancake)
• 4 Test Food groups (added gluten added casein
  added both added neither)
• Successfully recruitment of over 50 families
  across 3 sites
• Reports presentations underway (Adams et al,
  2008)

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CANDAA achievements to date

• Pilot studies
• UK-wide survey of parental professional
  attitudes (Autism Speaks) underway (2008-2009)
• Collaborations with international groups
• Multi- site RCT of the impact of GFCF diet in
  preschool children with autism

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CANDAA next steps

• UK consortium of ASD clinical research centres
• Support from parents professionals
• ASD charities support pressure gps
• Robust research methodology
• Funding strategy

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CANDAA next steps

• Research proposal
• gt200 pre-school children parents
• 3 principal UK sites ( London Newcastle
  Edinburgh)
• 5 month randomised controlled trial of the GFCF
  diet
• Qualitative evaluation of impact of this
  intervention on families professionals
• Budget Costing TOTAL- 1.5 million
• Research costs (including External Oversight
  Committee)
• Health professional support
• GFCF diet Test foods

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Does Diet Affect Autism?Take home messages..

• Include GI symptoms dietary history in
  assessment individual therapeutic educational
  plan and Family care plan
• Impact of behaviour problems Co-morbidity
• Support families who want to explore dietary
  interventions
• Prelim findings not nec ASD specific
• GFCF diets
• Other dietary manipulations very little
  information
• Research design funding

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• www.researchautism.net
• The Links between diet behaviour The influence
  of nutrition on mental health (Inquiry by
  Associate Parliamentary Food Health Forum, Jan
  2008)
• Identifying the environmental causes of disease
  how should we decide what to believe when to
  take action? (The Academy of Medical Sciences ,
  Nov 2007)
• Feeding Minds The impact of food on mental
  health (Mental Health Foundation)

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Acknowledgements

• Funders (in alphabetical order)
• Autism Speaks
• Childrens Foundation
• NHS RD grants
• Research Autism
• Professionals supporting families our research
• Families local support groups
• Charitable institutes pressure groups

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Acknowledgements

• Newcastle University
• Ashley Adamson Sandra Adams Nicola Burton Anna
  Cutress Sue Leach Elaine McColl Helen
  McConachie
• London
• Gillian Baird, Paul Gringras colleagues
• Edinburgh
• Anne OHare, David Wilson colleagues
• Heron Quality Foods

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