Top 10 signs of subjecting autistics to quack reatments

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Top 10 signs you may be subjecting your autistic to quack treatments

Read the Midnight In Chicago blog post entitled "If It Quacks Like a Duck" to discover the top ten signs you may be subjecting your autistic to any number of quack treatments.

Click here to read:

http://midnightinchicago.wordpress.com/ ... ke-a-duck/

Hi sins, I'm curious: Was your post meant to be funny or cynical, or perhaps a bit of both? If both, you are very clever indeed. I found it funny! Thanks

hey, DenvrDave!

I found this post on the Autism Activism section
http://www.wrongplanet.net/postt111827.html here on WP and thought it was a good read for the Parent's Discussion group. Not funny, not cynical, just informative.

Merle

It's what I've been saying for years those SOBs will try anything to make a buck of our kids!! !! ! Guess what were the mothers and father of consumtion patients of our time. They don't know what causes but they do know they can make a poop load of money off the fact like all parents we want our kids < more the parents of kids with LFA> to have happy lifes. Rotten stinking so and so's. WE got to stop buying in to it we've to stand up for our kids and stop letting them use them to make a fast buck and in the proess cause damage that can lead to in some cases death and in all most all financial ruin.

How timely. As this board gets more mainstream, I've found myself in the strange position of reading posts that advocate seeing a DAN! doctor - a group which the adult AS community pretty much considers quack. The problem is, there is growing evidence that there may be something real behind some diet changes, as AS adults themselves are now attesting to, after experimenting on themselves. So how much of what those doctors currently advocate is real, and how much is still fairy dust? I haven't researched it, we haven't gone the DAN! route, and I really don't know, so I try to stay out of it. But, still, this is a speciality that arose in response to a desire to make money, as far as I can tell. When serious medicine doesn't have an answer, and clients are demanding one, something will rise up and fill that void. But such groups can eventually move onto solid ground, and I just don't know where that is. Still, ALL parents need to remember that people ARE out to make money off of us, and to be wary as a result.

Last edited by DW_a_mom on 13 Nov 2009, 6:42 pm, edited 1 time in total.

It is interesting how one of the supposedly classic symptoms of autism, being unable to put oneself into another's shoes, ( which is debatable, but I am aware is often the case with me ), may have skewed the perspective of a significant portion of the autism community towards the dietary approach to mental health, ( mood and cognitive functioning and various neuropathies ), because research into the link has been going on since the 1930's or even before. ie. This is not just about "us"/autists!

And the massive increase in belief in its validity followed the spread of the internet as people began being able to read the work themselves, rather than relying on out of date books published by small publishing companies, "specialist" newspapers/magazines, or on the word/knowledge of their doctor, if anything even more out of date ( the average doctor receives 20 hours of teaching in nutrition in the whole four years of a medical degree, and very rarely reads anything else about it afterwards ).

Research into the connection definitely did not begin with people after money, far from it. It seems to have been pursued by oddly persistent, independent thinkers with a passion for understanding things. They really were heroes, the men, mostly, who pioneeered in the field, and had to put up with a lot of ridicule and scorn from medical colleagues, ( because these pioneers were all doctors ), and even loss of reputation, ... before being increasingly proved right as the century advanced.

Just because their work has been taken up by the unscrupulous or ignorant, to make money, aswell as by the honest, informed, and passionately concerned, does not invalidate their findings; this happens to most such discoveries.

If you read about it, if you really are interested, you find that there is an astonishing wealth, a bounty, an extraordinary mass of data to show how diet impacts on health, and then the most astonishing thing becomes not that food affects your mental health, but that society still doesn't know about it, ... until you remember how many billions of dollars the pharmaceutical and food and agricultural industries make out of the foods which are most frequently to blame for mental ill health ... and it isn't astonishing anymore, just desperately sad.

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Diet is only a small cog in the machinery we're talking about here, Ouinon. DAN! was and often still is the organization advocating chelation and diagnosing metals poisoning, among other questionable ideas. To apply skepticism to DAN! is NOT to wholely discount the play of diet issues. Diet has been just one of the treatments they bought into and sold.

Okay, thanks for the explanation. I don't really know anything about what DAN is/does except that they seemed to be controversial in some way, so I didn't appreciate/understand the dietary approach being linked to them all the time, as a criticism of exclusion diets etc, ( as if the dietary approach didn't exist in its own right, potentially useful for everybody, with increasingly solid scientific backing ).

.

What "solid scientific backing" everything I've ever read had been to the contray. Could you please link the studys I'd love to see them and beable to comepare them to the others I've read. Thanks

Scientific backing for the connection between diet and mental health is everywhere. There is way too much information to post here, but here are some useful links to start with if you are interested in the subject.

One of the best sites that I've found for grouping together links to a lot of scientific papers about the impact of gluten on both physical and mental health, ( including mood, cognitive function, and a variety of neuropathies ), is The Gluten File, which has collected a mass of references on the subject, at:

http://jccglutenfree.googlepages.com/

Its sister site, the forum, "Gluten Free and Beyond" has a great archives section, ( with links to papers/Pub Med abstracts etc ), and many threads with links to articles on other ( non-gluten ), aspects of diet ( vitamins, minerals, essential fatty acids, etc etc etc ), and their impact on mental and physical health, and is at:

http://www.glutenfreeandbeyond.org/forum/

Celiac.com is also a good resource, not only for people with "classic celiac disease" but for the gluten-sensitive/intolerant. There are hundreds of papers/articles etc on that site, at:

http://www.celiac.com/

Don't expect to find papers proving that dietary changes can "cure autism"; I don't think such a diet exists. But you will find hundreds of scientific studies/papers/articles on the way in which food acts on fundamental neurophysiological, endocrinal, and immune-system processes among others and how it can cause, and cure/substantially ameliorate, a vast range of problems ranging from depression, anxiety, mood disorder, through apraxia, dyspraxia, dyslexia, and ataxia, to chronic fatigue, insomnia, and brain-fog, poor memory, confusion, etc, aswell as loss of eyesight and hearing, and purely physical problems like constant "overall" aches and pains in bones/joints/muscles, etc, thyroid conditions, obesity, ... these are conditions that I have read papers about in the last year or so, but ... I'll quote from the list I used for my presentation on diet and mental health at Autscape this year:



Here are just a few of the references in the handout I wrote for the presentation, but it is only a drop in the ocean compared to what the creator of The Gluten File has managed to collect together. There are studies coming out all the time, and since doing my presentation at Autscape I have seen new studies on the connections between diet ( especially gluten ) and schizophrenia, ( so called ), and dyspraxia, apraxia, Alzheimers, ataxia, etc.

CELIAC DISEASE/ GLUTEN SENSITIVITY:

[ I have already linked to The Gluten File and Celiac.com above. ]

Harold Kraus, at: http://members.cox.net/hal.kraus/gluten.htm

http://members.cox.net/hal.kraus/gluten/thebasics.htm ( about gliadins etc )

“Dyslexic Children Show Astonishing Improvements on Gluten-Free Diet”, at:

http://www.timesonline.co.uk/tol/news/u ... 444290.ece

“Sporadic Cerebellar Ataxia Associated with Gluten Sensitivity”

http://www.ncbi.nlm.nih.gov/pubmed/18825674 M. Hadjivassilou, and

http://brain.oxfordjournals.org/cgi/con ... 124/5/1013

“The Celiac Disease of Mental Illness”, Dr. Kaslow at:

http://www.drkaslow.com/html/gluten-brain_connection .html

FOOD AND ITS EFFECTS on MENTAL and PHYSICAL HEALTH generally:

The Weston A. Price Foundation at http://www.westonaprice.org/splash_2.htm

Hundreds of articles on vitamin and mineral deficiencies, lipid metabolism, etc etc etc and their impact on mental and physical health.

On gluten: http://www.westonaprice.org/moderndisea ... rance.html

The Prison Diet Experiment, articles at : http://news.bbc.co.uk/2/hi/health/2764165.stm

http://www.guardian.co.uk/society/2008/ ... odanddrink

A sugar-free school reports better behaviour and higher academic performance:

http:// www.cnn.com/2008/HEALTH/12/11/sugar.fre ... index.html

“Gene Could Link Autism with Digestive Problems” ( about the M.E.T. gene ) at:

http://www.sciencenews.org/view/generic ... bellyaches

http://pediatrics.aappublications.org/c ... 123/3/1018

Link Between Autism and Mothers with Auto-immune Diseases, ( especially celiac ):

http://www.celiac.com/articles/21857/1/ ... Page1.html

Immune Dysfunction, ( eg. cytokine reaction to certain proteins, etc ) and autism.

Overview at: http://autism.suite101.com/article.cfm/ ... d_immunity

Immune system hyper-reactivity/inflammatory responses and cytokine production
triggered by common dietary proteins, bacterial endotoxins, etc in patients with ASDs.
Jyonouchi H. and others; this is just one of the growing number of papers on the subject:

http://www.ncbi.nlm.nih.gov/sites/entre ... h=12378124

“Immune Response to Dietary Proteins, Gliadin and Cerebellar Peptides in Children With

Autism” by Vodjani A etc, at: http://www.ncbi.nlm.nih.gov/pubmed/15526989

“Higher Plasma Concentrations of Food Specific Antibodies in Persons with Autism”:

http://foa.sagepub.com/cgi/content/abst ... /176?rss=1

“Increased Oxidative Stress and Impaired Methylation Capacity in Children with Autism”

http://www.ajcn.org/cgi/content/abstract/80/6/1611 ( Jill James, Paul Cutler, et al. 2004 )

... ... THE IMPACT OF PHYSICAL HEALTH ON MENTAL HEALTH:

***“A Mind Under Siege” by Phyllida Brown at:

http://biopsychiatry.com/immunesystem/index.html

( The article is brilliant, and there are links to several scientific papers/studies at the bottom of the page ).

“Effect of Immune-system Activity on Mood and Memory” at:

http://mentalhealth.about.com/library/w ... 52101a.htm

Happy hunting.

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I was the one who made the original post. It was in the autism and the media area.

Regarding gluten diets and the alleged science behind it, gluten therapy has been proven repeatedly to be ineffective for autistics unless the autistics in question have Celiac disease.

Research also shows autistics are no more likely than non-autistics to have Celiac disease, and that restrictive diets can cause nutritional problems, including protien malnutrition.

Parents want to believe these therapies work, and it is often shown in studies that because parents act differently toward their children, their autistic children react more positively to them. But the diets themselves -or any other quack therapy- prove ineffective.

Another interesting point is that studies have found that the majority of "gluten-free" products have significant gluten in them, sometimes in excess of the amounts of products which make no claim whatsoever to being gluten-free. Therefore, parents claiming that their children benefit from gluten-free products are actually engaging in wishful thinking.

Personally, given that gluten-free products are more expensive, I've always considered the added expense a "tax" on people's gullibility. I've heard that manufacturers of gluten-free products manufacture them at less cost than products with gluten. After all, when you do NOT have to include an ingredient, it costs less to manufacture, and sometimes what you substitute costs LESS that the original product, especially if it is some non-organic, andpotentitally toxic "filler." Given, as you will see, that many of the "gluten-free" products on the market contain high amounts of gluten that, even as the parents claim their children's dispositions improve from being on these gluten-free diets, it seems to me that these parents and caregivers deserve what they get for being schmoozed by these masters of gluten-free illusion.

See the studies below that back up all that I have said here.

The Mayo Clinic says:

http://www.mayoclinic.com/health/autism ... nt/AN01519

"There's no evidence that special diets are an effective autism treatment."

<snip>

"Proponents of restrictive diets believe that casein, a protein found in dairy products, and gluten, a protein found in many grains, affect brain development and behavior, causing autism in some children. However, there's no scientific evidence that this is true or that restricting these foods improves autism. Furthermore, restrictive diets can result in nutritional deficiencies in growing children."

http://www.injuryboard.com/national-new ... eid=267826

"Parents Urged To Reject Restrictive Diets For Autism"


"The frequency of GI symptoms was about GI symptoms were observed to be roughly equal among the two groups, 77 percent in the autism group and 72 percent among the others, not considered a statistically significant difference.

"Researchers urge parents to reject restrictive diets."

http://www.startribune.com/lifestyle/15315781.html

"Giving up gluten: The latest diet fad?"

"Murray said there is little or no evidence to support a connection between gluten and other ailments, including autism."

http://www.researchautism.net/intervent ... .ikml?ra=1

"Gluten-Free, Casein-Free Diet"

"we cannot recommend the use of such diets."

http://news.bbc.co.uk/1/hi/health/7300327.stm

"Leaky gut autism theory doubted"

"Advocates of the leaky gut theory offer children a casein and gluten-free diet which as yet lacks an evidence base. Our research throws serious scientific doubt on the putative scientific basis of that diet."

http://www.disabilityscoop.com/2009/07/ ... inal/4327/

"New Research Questions Gluten-Free Diets"

"The results indicate that there is no reason for children with autism to be put on a special diet, researchers say, without a diagnosis of a separate condition, reports The New York Times."

http://64.233.167.104/search?q=cache:5p ... www.cairn-
site.com/issues/issue_04.html+gluten+malnutrition+autism&hl=en&ct=clnk
&cd=1&gl=ca

"Plasma amino acids profiles in children with autism: Potential risk of nutritional deficiencies."

"One of the problems is that children on it, or any other restricted diet, can develop protein malnutrition."

http://www.asatonline.org/suggreading/reviews/elder.htm

"Review of The gluten-free, casein-free diet in autism: Results of a preliminary double blind clinical trial"

"Based on the results of this study, we recommend that interventionists working with children with autism present the GfCf diet as non-supported as a treatment for autism and advise parents who are considering this intervention to evaluate it carefully."

http://www.asatonline.org/resources/tre ... pecial.htm

"Special Diets"

"One well-designed but small study on the gluten-free casein-free diet found no improvement in cognitive, language, or motor skills with the diet"

http://www.sciencedaily.com/releases/20 ... 115240.htm

"No Link Found Between Autism And Celiac Disease"

"The study found autistic children were no more likely than children without autism to develop celiac disease. Anti-gliadin antibodies were found in four children with autism and two without autism. Biopsies on all six children came back negative for celiac disease."


http://ottawasun.com/News/Columnists/Sh ... 5-sun.html

Sun, December 2, 2007

"Autism: Piecing it together"


"Problem is, there's no good scientific evidence to prove a relationship between diet and improved behaviour for autistics."

http://www.chicagotribune.com/features/ ... 6031.story

"ALLERGY THREAT: A TRIBUNE INVESTIGATION

"Children at risk in food roulette
"Mislabeling, lax oversight threaten people with allergies"


"But an alarming number of products sold as allergen-free actually contain harmful amounts, the Tribune found."

<snip>

"To determine the full scope of the problem, the Tribune created an unprecedented computer database of 2,800 recalls related to food allergies over the last 10 years. The newspaper found that roughly five products a week are recalled because of hidden allergens, making it one of the top reasons any consumer product in America is recalled."

<snip>

"The USDA, which has jurisdiction over meat-based products such as chicken nuggets, said it has no policy specifically addressing "gluten-free" claims. The agency must approve labels before products go to market, and packaging claims are reviewed on a case-by-case basis.

"The FDA's rules are tougher. Though the agency has no specific rule for "gluten-free" products, the agency's policy generally is that absent a standard, products claiming to be "free" of an ingredient cannot contain it.

"Recognizing that food companies may interpret these rules as they wish, the FDA has pushed a proposed rule that products advertised as "gluten-free" must contain less than 20 parts per million of gluten.

http://www.acsh.org/factsfears/newsID.1 ... detail.asp

"Autism Exploitation"

"But promoters of this deceit are cashing in with books, lectures, and, worst of all, scientifically unsupported treatments that are not only ineffective but can be dangerous. Such treatments include chelation, hyperbaric oxygen, lupron, and a wide variety of other questionable therapies, diets, and ineffective behavioral regimens"

http://technology.sympatico.msn.cbc.ca/ ... &date=True

"Loss of control fuels rituals, superstition: study"


"People turn to superstitions, rituals and conspiracy theories as a way to deal with complex or chaotic circumstances, according to the study, published in the journal Science."

Thanks to both of you for clearing that up for me. I'm going to just keep doing what I'm doing and treat my son with kindness, repect and send him to a good school.

Exactly.

1% of the population have celiac disease, and 10% of the population have gliadin antibodies ( causing gluten-sensitivity ). That means that, autist or not, you have a one in ten chance of being gluten-sensitive, and therefore a one in ten chance of benefiting from a gluten-free diet. ( Or are you suggesting that people on the spectrum are less likely than the general population to have celiac disease or gliadin antibodies? ! )


Exactly.

There isn't. What there is is evidence that a gluten-free diet can cure or alleviate a huge number of physical and mental health problems in people with celiac disease, or non-celiac gluten-sensitivity/intolerance, ... which is 10% of the population.

And gluten is only one of the ways in which diet can affect mental and physical health.

40% of the population are fructose intolerant, for example. Fructose is present in wheat, corn, ( eg. high fructose corn syrup ), and fruit, among other things, and is known to block tryptophan ( in the 40% of people unable to properly digest fructose ), leading to depression.

And there are so many other things; eg. high carbohydrate diets impact on the lipid metabolism; the brain uses more lipids than any other organ in the body, and lipid-imbalance/dysfunction has been found in autists, schizophrenics, etc. ...

....

Abstracts from studies investigating the effect of gluten on the permeability of the gut and on neurological functioning:

Gliadin, zonulin and gut permeability: Effects on celiac and non-celiac intestinal mucosa and intestinal cell lines.
Drago S, El Asmar R, Di Pierro M, Grazia Clemente M, Tripathi A, Sapone A, Thakar M, Iacono G, Carroccio A, D'Agate C, Not T, Zampini L, Catassi C, Fasano A.

Mucosal Biology Research Center, Center for Celiac Research and Division of Pediatric Gastroenterology and Nutrition, University of Maryland, School of Medicine, Baltimore, MD 21201, USA.

OBJECTIVE: Little is known about the interaction of gliadin with intestinal epithelial cells and the mechanism(s) through which gliadin crosses the intestinal epithelial barrier. We investigated whether gliadin has any immediate effect on zonulin release and signaling. MATERIAL AND METHODS: Both ex vivo human small intestines and intestinal cell monolayers were exposed to gliadin, and zonulin release and changes in paracellular permeability were monitored in the presence and absence of zonulin antagonism. Zonulin binding, cytoskeletal rearrangement, and zonula occludens-1 (ZO-1) redistribution were evaluated by immunofluorescence microscopy. Tight junction occludin and ZO-1 gene expression was evaluated by real-time polymerase chain reaction (PCR). RESULTS: When exposed to gliadin, zonulin receptor-positive IEC6 and Caco2 cells released zonulin in the cell medium with subsequent zonulin binding to the cell surface, rearrangement of the cell cytoskeleton, loss of occludin-ZO1 protein-protein interaction, and increased monolayer permeability. Pretreatment with the zonulin antagonist FZI/0 blocked these changes without affecting zonulin release. When exposed to luminal gliadin, intestinal biopsies from celiac patients in remission expressed a sustained luminal zonulin release and increase in intestinal permeability that was blocked by FZI/0 pretreatment. Conversely, biopsies from non-celiac patients demonstrated a limited, transient zonulin release which was paralleled by an increase in intestinal permeability that never reached the level of permeability seen in celiac disease (CD) tissues. Chronic gliadin exposure caused down-regulation of both ZO-1 and occludin gene expression. CONCLUSIONS: Based on our results, we concluded that gliadin activates zonulin signaling irrespective of the genetic expression of autoimmunity, leading to increased intestinal permeability to macromolecules.

PMID: 16635908 http://www.ncbi.nlm.nih.gov/pubmed/1663 ... stractPlus


Neurological symptoms in patients with biopsy proven celiac disease.

Bürk K, Farecki ML, Lamprecht G, Roth G, Decker P, Weller M, Rammensee HG, Oertel W.
Department of Neurology, University of Marburg, Marburg, Germany.

In celiac disease (CD), the gut is the typical manifestation site but atypical neurological presentations are thought to occur in 6 to 10% with cerebellar ataxia being the most frequent symptom. Most studies in this field are focused on patients under primary neurological care. To exclude such an observation bias, patients with biopsy proven celiac disease were screened for neurological disease. A total of 72 patients with biopsy proven celiac disease (CD) (mean age 51 +/- 15 years, mean disease duration 8 +/- 11 years) were recruited through advertisements. All participants adhered to a gluten-free diet. Patients were interviewed following a standard questionnaire and examined clinically for neurological symptoms. Medical history revealed neurological disorders such as migraine (28%), carpal tunnel syndrome (20%), vestibular dysfunction (8%), seizures (6%), and myelitis (3%). Interestingly, 35% of patients with CD reported of a history of psychiatric disease including depression, personality changes, or even psychosis. Physical examination yielded stance and gait problems in about one third of patients that could be attributed to afferent ataxia in 26%, vestibular dysfunction in 6%, and cerebellar ataxia in 6%. Other motor features such as basal ganglia symptoms, pyramidal tract signs, tics, and myoclonus were infrequent. 35% of patients with CD showed deep sensory loss and reduced ankle reflexes in 14%. Gait disturbances in CD do not only result from cerebellar ataxia but also from proprioceptive or vestibular impairment. Neurological problems may even develop despite strict adherence to a gluten-free diet [ as a result of reduced absorption of crucial vitamins like B12, etc, caused by early intestinal damage]. (c) 2009 Movement Disorder Society.

PMID: 19845007 Oct 2009

Gluten sensitivity in Japanese patients with adult-onset cerebellar ataxia.
Ihara M, Makino F, Sawada H, Mezaki T, Mizutani K, Nakase H, Matsui M, Tomimoto H, Shimohama S.

Department of Neurology, Kyoto University Graduate School of Medicine, Kyoto.

OBJECTIVE: Gluten sensitivity is associated with multiple neurological abnormalities including gluten ataxia, motor neuron disease-like neuropathy, small fiber type neuropathy, cognitive impairment, and even parkinsonism. We investigated whether or not gluten sensitivity is involved in Japanese patients with idiopathic cerebellar ataxia with extracerebellar presentation. PATIENTS OR MATERIALS: Fourteen patients with idiopathic cerebellar ataxia with extracerebellar presentation (autonomic instability, parkinsonism, or pyramidal dysfunction in varying combinations) were screened for anti-gliadin antibodies (AGA) to analyze for the presence or absence of gluten sensitivity. Patients with typical MR findings of multiple system atrophy of the cerebellar type were excluded. As disease controls without cerebellar ataxia, 9 patients with Parkinson's disease and 18 patients with amyotrophic lateral sclerosis were screened for AGA. Forty-seven normal controls were also screened for AGA. RESULTS: We found a high prevalence of AGA in 5 (36%) of 14 cerebellar ataxia patients, but in only 1 (4%) of 27 disease controls without cerebellar ataxia (odds ratio, 14.4; 95% CI, 1.41147; p<0.05) and in only 1 (2%) of 47 normal controls (odds ratio, 25.6; 95% CI, 2.66246; p<0.001). Among the cerebellar ataxia patients, atypical features such as sensorimotor neuropathy and/or mild cognitive impairment were more prevalent in the AGA-positive group (60%) than in the AGA-negative group (0%). In one of the ataxic patients with AGA, a gluten-free diet had positive effects on neurological symptoms and nutritional status. CONCLUSION: Gluten sensitivity is involved in at least some of the unexplained neurological symptoms of Japanese patients with adult-onset, sporadic cerebellar ataxia.

Remember, one in ten of the population have some kind of gluten-sensitivity.

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This sounds like a good school!

"Dyslexic Children Show Astonishing Improvements on Gluten-Free Diet”, at:

http://www.timesonline.co.uk/tol/news/u ... 444290.ece


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No evidence of a greater frequency of classic celiac disease among autists, but:

And here is part of a paper by Vojdani on prevalence and symptoms of gluten sensitivity:


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