Teresa Binstock
Researcher in Developmental & Behavioral Neuroanatomy
January 05, 2010
"Pediatrics", the journal of the American Academy of Pediatrics (AAP),
has published two papers conveying the validity and usefulness of
gastrointestinal evaluations and treatments (when appropriate) in
children with autism or one of the other autism-spectrum disorders
(1-2). These two articles are important for pediatricians and for other
physicians who have autistic children as patients. The two
peer-reviewed studies are free online (links in 1,2).
Two sections of cite-1 -- Evaluation, Diagnosis, and Treatment of
Gastrointestinal Disorders in Individuals With ASDs: A Consensus
Report -- offer summary comments about
food-elimination diets as a therapeutic strategy (3-4). A perusal of
those sections makes clear that Timothy Buie and colleagues are not
saying diets such as GFCF don't work for any and all autistic children.
Indeed, the researchers call for more research into gut, diet, and
ASDs, advise nutrient monitoring, and admit that many parents report
that a specific food-elimination diet has been helpful for their ASD
child.
Perhaps not surprisingly, Associated Press distributed a "news"
editorial item (a) that failed to convey the AAP's new stance regarding
gastro evaluations of autistic children, and (b) that oversimplified
and over-stated what Buie et al wrote regarding elimination diets.
The AP writer offered, "An expert panel says there's no
rigorous evidence that digestive problems are more common in children
with autism compared with other children, or that special diets work,
contrary to claims by celebrities and vaccine naysayers." (5)
Importantly, the Buie et al team stresses the importance of
gastrointestinal pathologies in subgroups of ASD children and does not
rule out the possibility that diets such as GFCF may help some
individual children.
Also important is the fact that whereas Buie et al cited Elder
JH 2008 (6), wherein 9 of 15 children's parents wanted to continue GFCF
after the study concluded (summary in 1), Buie et al's articles in
Pediatrics didn't mention a similarly small study by Knivsberg et al
2001, "A randomised, controlled study of dietary intervention in
autistic syndromes", wherein (with highlight added):
"The aim of this single blind study was to evaluate effect of
gluten and casein-free diet for children with autistic syndromes and
urinary peptide abnormalities. A randomly selected diet and control
group with 10 children in each group participated. Observations and
tests were done before and after a period of 1 year. The development for the group of
children on diet was significantly better than for the
controls." (7)
The GFCF study which Buie et al did cite reported that 60% of the
children's parents wanted to continue that diet (6). That percentage is
close to the percentage among parents (66% of N = 2561) who reported
the GFCF diet to be beneficial -- as summarized in an ongoing survey of
Parent Ratings of various treatments, conducted by the Autism Research
Institute, with current results available online (8)
In contrast to the AP's cleverly slanted rhetoric, a news outlet in
Tampa appreciated the significance of the AAP's new stance as
represented by Pediatrics publication of the two autism/gastro articles
(9).
Indeed, evaluating autistic and other ASD children for food
hypersensitivity is not unwarranted, given recent findings by the CDC
(10, see also 11), eg,
-- "Four out of every 100 children have a food allergy"
-- "Food allergy among children in the United States is becoming more
common over time."
-- "Children with food allergy are more likely to have asthma or other
allergic conditions."
Physicians and parents wanting to understand beliefs about food
allergies may appreciate two recently published findings, eg, "Food
allergy knowledge, attitudes and beliefs: focus groups of parents,
physicians and the general public" (12-13).
References:
1. Evaluation,
Diagnosis, and Treatment of Gastrointestinal Disorders in Individuals
With ASDs: A Consensus Report
Buie T et al.
Pediatrics 2010;125:S1–S18.
http://pediatrics.aappublications.org/cgi/content/full/125/Supplement_1/S1
Autism spectrum disorders (ASDs) are common and clinically
heterogeneous neurodevelopmental disorders. Gastrointestinal disorders
and associated symptoms are commonly reported in individuals with ASDs,
but key issues such as the prevalence and best treatment of these
conditions are incompletely understood. A central difficulty in
recognizing and characterizing gastrointestinal dysfunction with ASDs
is the communication difficulties experienced by many affected
individuals. Amultidisciplinary panel reviewed the medical literature
with the aim of generating evidence-based recommendations for
diagnostic evaluation and management of gastrointestinal problems in
this patient population. The panel concluded that evidence-based
recommendations
are not yet available. The consensus expert opinion of the panel was
that individuals with ASDs deserve the same thoroughness and standard
of care in the diagnostic workup and treatment of gastrointestinal
concerns as should occur for patients without ASDs. Care providers
should be aware that problem behavior in patients with ASDs may be the
primary or sole symptom of the underlying medical condition, including
some gastrointestinal disorders. For these patients, integration of
behavioral and medical care may be most beneficial. Priorities for
future research are identified to advance our understanding and
management of gastrointestinal disorders in persons with ASDs.
2. Recommendations
for Evaluation and Treatment of Common Gastrointestinal Problems in
Children With ASDs
Buie T et al.
Pediatrics 2010;125:S19–S29
http://pediatrics.aappublications.org/cgi/content/full/125/Supplement_1/S19
Children with autism spectrum disorders (ASDs) can benefit from
adaptation of general pediatric guidelines for the diagnostic
evaluation of abdominal pain, chronic constipation, and
gastroesophageal reflux disease. These guidelines help health care
providers determine when gastrointestinal symptoms are self-limited and
when evaluation beyond a thorough medical history and physical
examination should be considered. Children with ASDs who have
gastrointestinal disorders may present with behavioral manifestations.
Diagnostic and treatment recommendations for the general pediatric
population are useful to consider until the development of
evidence-based guidelines specifically for patients with ASDs.
3. Statement
11(cite 1): Anecdotal reports have
suggested that there may be a subgroup of individuals with ASDs who
respond to dietary intervention. Additional data are needed before
pediatricians and other professionals can recommend specific dietary
modifications.
4. Statement
12(cite 1): Available research
data do not support the use of a casein-free diet, a gluten-free diet,
or combined glutenfree, casein-free (GFCF) diet as a primary treatment
for individuals with ASDs.
5. Evidence lacking
for special diets in autism, experts say
By Carla K. Johnson
The Associated Press
01/04/2010
http://www.denverpost.com/ci_14116398
6. The gluten-free,
casein-free diet in autism: an overview with clinical
implications
Elder JH.
University of Florida
Nutr Clin Pract. 2008 Dec-2009 Jan;23(6):583-8.
The prevalence of classic autism and autism spectrum disorder (ASD)
appears to be on the rise, and to date, there remains no clear etiology
or cure. Out of desperation, many families are turning to new therapies
and interventions discovered through various media sources and
anecdotal reports from other parents. Unfortunately, many of these
newer, well-publicized interventions have little empirical support. One
of the most popular yet currently scientifically unproven interventions
for ASD is the gluten-free, casein-free (GFCF) diet. Clinicians working
with families of individuals with ASD are often asked for advice and
find themselves unable to offer the most up-to-date and scientifically
credible information. This article provides an overview of ASD and the
GFCF diet, a summary and critique of current research findings,
recommendations for future research, and practical advice for families
to use in deciding if a trial of the GFCF diet is in the best interest
of their child and family.
7. A randomised,
controlled study of dietary intervention in autistic
syndromes
Knivsberg AM, Reichelt KL, Høien T, Nødland M.
Nutr Neurosci. 2002 Sep;5(4):251-61.
Impaired social interaction, communication and imaginative skills
characterize autistic syndromes. In these syndromes urinary peptide
abnormalities, derived from gluten, gliadin, and casein, are reported.
They reflect processes with opioid effect. The aim of this single blind
study was to evaluate effect of gluten and casein-free diet for
children with autistic syndromes and urinary peptide abnormalities. A
randomly selected diet and control group with 10 children in each group
participated. Observations and tests were done before and after a
period of 1 year. The development for the group of children on diet was
significantly better than for the controls.
8. ARI Parent
Ratings: For several decades, the
Autism Research Institute has been creating a database comprised of
parental reports of what treatments worked (for a specific child), what
treatments didn't work; which set the child back, which didn't seem to
have any effect. The data include pharmaceuticals, supplements, and
diets. In each line-item within the data presentation, consider the
ratio (per treatment) of got-better/got-worse. Parent Ratings of
Behavorial Effects of Biomedical Interventions
9. Pay attention to
digestive disorders in kids with autism
http://www.wtsp.com/news/local/story.aspx?storyid=121662&catid=8
"The team's report, published in the January issue of
Pediatrics, calls for more research into a link between
gastrointestinal issues and autism and also stresses the need for
pediatricians to test for G.I. problems..."
10. Food Allergy
Among U.S. Children: Trends in Prevalence and
Hospitalizations
Amy M. Branum, M.S.P.H. and Susan L. Lukacs, D.O., M.S.P.H.
http://www.cdc.gov/nchs/data/databriefs/db10.pdf
11. Food Allergy
Among Children in the United States
Amy M. Branum, MSPH and Susan L. Lukacs, MSPH, DO
Pediatrics 2009;124:000
http://pediatrics.aappublications.org/cgi/content/abstract/peds.2009-1210v1
12. Food allergy
knowledge, attitudes and beliefs: focus groups of parents, physicians
and the general public
Gupta RS, Kim JS, Barnathan JA, Amsden LB, Tummala LS, Holl JL.
Northwestern University, Feinberg School of Medicine
BMC Pediatr. 2008 Sep 19;8:36.
http://www.biomedcentral.com/1471-2431/8/36
BACKGROUND: Food allergy prevalence is increasing in US children.
Presently, the primary means of preventing potentially fatal reactions
are avoidance of allergens, prompt recognition of food allergy
reactions, and knowledge about food allergy reaction treatments. Focus
groups were held as a preliminary step in the development of validated
survey instruments to assess food allergy knowledge, attitudes, and
beliefs of parents, physicians, and the general public. METHODS: Eight
focus groups were conducted between January and July of 2006 in the
Chicago area with parents of children with food allergy (3 groups),
physicians (3 groups), and the general public (2 groups). A constant
comparative method was used to identify the emerging themes which were
then grouped into key domains of food allergy knowledge, attitudes, and
beliefs. RESULTS: Parents
of children with food allergy had solid fundamental knowledge but had
concerns about primary care physicians' knowledge of food allergy,
diagnostic approaches, and treatment practices. The considerable impact of children's food allergies on
familial quality of life was articulated. Physicians had good basic
knowledge of food allergy but differed in their approach to diagnosis
and advice about starting solids and breastfeeding. The general public
had wide variation in knowledge about food allergy with many
misconceptions of key concepts related to prevalence, definition, and
triggers of food allergy. CONCLUSION: Appreciable food allergy
knowledge gaps exist, especially among physicians and the general
public. The quality of life for children with food allergy and their
families is significantly affected. This is a private, confidential
list. The right to circulate any information posted is retained solely
by the author of that information.
13. Food Allergy
Knowledge, Attitudes, and Beliefs of Primary Care
Physicians
Gupta RS, Springston EE, Kim JS, Smith B, Pongracic JA, Wang X, Holl
J.
Pediatrics. 2009 Dec 7. [Epub ahead of print]
http://pediatrics.aappublications.org/cgi/content/full/125/1/126
Objective: To provide insight into food allergy knowledge and
perceptions among pediatricians and family physicians in the United
States. Methods: A national sample of pediatricians and family
physicians was recruited between April and July 2008 to complete the
validated, Web-based Chicago Food Allergy Research Survey for Primary
Care Physicians. Findings were analyzed to provide composite/itemized
knowledge scores, describe attitudes and beliefs, and examine the
effects of participant characteristics on response. Results: The sample
included 407 primary care physicians; 99% of the respondents reported
providing care for food-allergic patients. Participants answered 61% of
knowledge-based items correctly. Strengths and weaknesses were
identified in each content domain evaluated by the survey. For example,
80% of physicians surveyed knew that the flu vaccine is unsafe for
egg-allergic children, 90% recognized that the number of food-allergic
children is increasing in the United States, and 80% were aware that
there is no cure for food allergy. However, only 24% knew that oral
food challenges may be used in the diagnosis of food allergy, 12%
correctly rejected that chronic nasal problems are not symptom of food
allergy, and 23% recognized that yogurts/cheeses from milk are unsafe
for children with immunoglobulin E-mediated milk allergies. Fewer than
30% of the participants felt comfortable interpreting laboratory tests
to diagnose food allergy or felt adequately prepared by their medical
training to care for food-allergic children. Conclusions: Knowledge of
food allergy among primary care physicians was fair. Opportunities for
improvement exist, as acknowledged by participants' own perceptions of
their clinical abilities in the management of food allergy.
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