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Have you ever considered going on GFCF diet
I am on it now 11%  11%  [ 6 ]
I used to be on it; it didn't work, so I got off of it 5%  5%  [ 3 ]
I plan to get on it when I have more time/energy to devote to it 7%  7%  [ 4 ]
I agree it works *BUT* I don't have enough will power to do that 4%  4%  [ 2 ]
I agree it works *BUT* I don't want to change who I am 0%  0%  [ 0 ]
I agree it works *BUT* I don't want to brush autism in my face by following it 2%  2%  [ 1 ]
I agree it works *BUT* there are other things that are as, or more, effective 0%  0%  [ 0 ]
I agree it works *BUT* on a scale 1-10 its importance is below 5 0%  0%  [ 0 ]
I agree this diet works FOR SOME AUTISTICS but not nearly for all 18%  18%  [ 10 ]
I think this diet is for ppl with classical autism, NOT for aspies 0%  0%  [ 0 ]
I think this diet is for kids, NOT adults 0%  0%  [ 0 ]
I don't think this diet works 5%  5%  [ 3 ]
This diet is based on pseudo-science 28%  28%  [ 16 ]
Other 21%  21%  [ 12 ]
Total votes : 57

Roman
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14 Aug 2009, 5:30 am

Have you ever considered going on GFCF diet?



sheppeyescapee
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14 Aug 2009, 5:50 am

Other, I was on it but I had to put gluten back into my diet because my GP wants me to be tested for celiac. I've noticed differences in energy levels, distractability has gone up, stomach problems have returned, my moods have been worse too :(



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14 Aug 2009, 6:32 am

I wouldn't touch that diet, or any other diet in that matter, with a 10 foot pole.


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14 Aug 2009, 9:37 am

It's not going to do a thing to change your autism, but if you're lactose or gluten intolerant, it'll do wonders, autistic or not.

The diet itself is a logical thing--IF applied to actual food intolerance or allergy.

Applying it to autism is pseudoscience.

I've been on it, and it didn't change my autism one bit--and if you knew my mom, you would know exactly how strict she is about diets. Actually, that was the stretch of years when I got my first depressive episode (probably coincidentally).


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14 Aug 2009, 10:35 am

Reasons why people on the spectrum may be more likely than most people to find a gluten-free diet useful:

A very large, recent, study by Eaton et al, showed that children of mothers with celiac disease are three times more likely to be autist than children of mothers without an auto-immune disease, which suggests that gluten-intolerance, or sensitivity, may be more common among autists, indicating that a gf diet is more likely to be useful for someone on the spectrum than in the population at large.

And there are several studies which show that autists have higher levels of gliadin ( the offending bit of gluten ), and other anti-bodies, ( to various dietary proteins aswell as bacterial endotoxins/lipopoylysaccharides ), than the general population. A couple by Vojdani but here is another:

Quote:
Higher Plasma Concentration of Food-Specific Antibodies in Persons With Autistic Disorder in Comparison to Their Siblings

Vladimir Trajkovski Aleksandar Petlichkovski et al. Institute of Immunobiology and Human Genetics, Faculty of Medicine, University Ss. Kiril and Metodij, Skopje

Specific IgA, IgG, and IgE antibodies to food antigens in 35 participants with autistic disorder and 21 of their siblings in the Republic of Macedonia were examined. Statistically significant higher plasma concentration of IgA antibodies against alpha-lactalbumin, beta-lactoglobulin, casein, and gliadin were found in the children with autistic disorder.

Plasma concentrations of IgG antibodies against alpha-lactalbumin, beta-lactoglobulin, and casein in participants with autistic disorder were significantly higher. IgE-specific antibodies (alpha-lactalbumin, beta-lactoglobulin, casein, and gluten), as well as plasma concentration of total IgE, also were statistically significantly higher in the participants with autistic disorder. Gender differences were found for select IgA, IgG, and IgE (but not for total IgE) food-specific antibodies (kU/L) in the participants with autistic disorder and their siblings.
.


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

Quote:
The immunology of gluten sensitivity beyond the intestinal tract

Aristo Vojdani, Ph.D., M.T.1*; Thomas O’Bryan, D.C., C.C.N., D.A.C.B.N.2

Gluten sensitivity, celiac disease (CD) and gluten-sensitive enteropathy are terms that have been used synonymously to refer to a disease process affecting the small bowel and characterized by gastrointestinal symptoms and malabsorption. However, since 1966 scientific evidence has been accumulated demonstrating that gluten sensitivity can exist even in the absence of enteropathy. For example, patients with dermatitis herpetiformis and presentation of blistering skin do not have any gastrointestinal symptoms but have elevated gliadin antibody in the blood which improves on a gluten-free diet.

Additionally, associations of CD with other organs such as the central and peripheral nervous systems also go as far back as 1966. However, until recently, this phenomenon of immune reaction against neural tissue, in particular the cerebellum, was attributed to vitamin deficiencies and not to immunological pathogenesis. During the past five years, based on overwhelming evidence of immune pathogenesis involving organs other than gut and skin, many scientists have begun to re-evaluate the notion that gluten sensitivity is solely a disease of the gut.

Other organs suspected of involvement include: the joint, the heart, thyroid, bone, the brain cerebellum and the neuronal synapsins which are summarized below.

Although it is believed that the prevalence of CD is one in one hundred, for every symptomatic patient with CD there are eight patients with CD with no GI symptom. In addition 10% of the apparently healthy population have significant elevation in gliadin antibody but no obvious classic disease manifestations. In our laboratory, when the blood of these individuals is tested against different tissue antigens (joint, myosin, endothelial cell, bone antigens, myelin basic protein, cerebellar and synapsin peptides) more than 90% of them exhibit elevation in IgG, IgM and IgA antibodies against one or all these organ-specific antigens.
.


If you hadn't already guessed, I am on a gf diet. And it makes a huge difference to my mental health; it has eliminated depression, hypomania, headaches, frequent infections, aswell as sleep problems, and brain-fog/confusion. In fact it has made so much difference to me, and I have read so much about it, and other links between diet and mental health, that I am making a presentation on the subject, ( connections between diet and mental health ), at Autscape in London next week! :D :D :D

.



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14 Aug 2009, 11:06 am

i'm not sure what the differences are, but I have done the SugarBusters and Atkins diets, and low-sugar/low-carb diets have made a difference in my moods and general well being, although some things were worsened due to lack of potassium (hard to get outside of high-carb foods like potatoes and bananas).



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14 Aug 2009, 11:33 am

I'm gonna bet the moms with celiac disease were a LOT skinnier. An underweight mother makes a difficult pregnancy, which is known to affect autism. My mom dipped under 100 pounds when hers was worst.

I'm an autistic child of a mother with celiac disease. I am not gluten intolerant and the GF/CF diet did not help me. The only child in my family, out of three, who has digestive problems is the one neurotypical--and her problem is red meat, not wheat. (The little one is a picky eater, but then you kind of expect that.)

Autistic kids are no likelier than NT kids to have celiac, incidentally.


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14 Aug 2009, 11:52 am

Callista wrote:
Autistic kids are no likelier to have celiac incidentally.

This study which I quoted above, and requote below, is just one of several showing that autists have higher concentrations of gliadin antibodies. Gliadin is the bit in gluten which the auto-immune system reacts to in people with gluten sensitivity/celiac disease etc. Therefore autists are in fact likelier to be gluten sensitive. You are not a representative sample, so the fact that you are not sensitive to gluten in no way invalidates the findings of this study.
ouinon wrote:
And there are several studies which show that autists have higher levels of gliadin ( the offending bit of gluten ), and other anti-bodies, ( to various dietary proteins aswell as bacterial endotoxins/lipopoylysaccharides ), than the general population. A couple by Vojdani but here is another:
Quote:
Higher Plasma Concentration of Food-Specific Antibodies in Persons With Autistic Disorder in Comparison to Their Siblings

Vladimir Trajkovski Aleksandar Petlichkovski et al. Institute of Immunobiology and Human Genetics, Faculty of Medicine, University Ss. Kiril and Metodij, Skopje

Specific IgA, IgG, and IgE antibodies to food antigens in 35 participants with autistic disorder and 21 of their siblings in the Republic of Macedonia were examined. Statistically significant higher plasma concentration of IgA antibodies against alpha-lactalbumin, beta-lactoglobulin, casein, and gliadin were found in the children with autistic disorder.

Plasma concentrations of IgG antibodies against alpha-lactalbumin, beta-lactoglobulin, and casein in participants with autistic disorder were significantly higher. IgE-specific antibodies (alpha-lactalbumin, beta-lactoglobulin, casein, and gluten), as well as plasma concentration of total IgE, also were statistically significantly higher in the participants with autistic disorder. Gender differences were found for select IgA, IgG, and IgE (but not for total IgE) food-specific antibodies (kU/L) in the participants with autistic disorder and their siblings.


.



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14 Aug 2009, 12:06 pm

GFCF is for treating food sensitivities. Some autistics have food sensitivities. Therefore, GFCF may work for some autistics (I think it's possible that the autism behavior can improve whent he food sensitivity is under control, for various reasons). I hav enever been on this diet and wouldn't go on it if there is no reasont o think I have a food sensitivity.



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14 Aug 2009, 12:53 pm

This is the one thing that MIGHT work for some. The logic is simple: if you have a food sensitivity, and continue eating that food, you will not function at your best, and you will present as being more impaired than you need to.

The thing I've noticed on these forums, that is not emphasized enough, if that the problem is most likely ONLY gluten. The whole CFGF thing got stumbled onto, but I don't think you can say that the autistic population overwhelmingly suffers from Celiac disease. What it seems you CAN say is that autistic population can be unecessarilly impaired by food sensitivities to gluten, OR casien, OR soy, OR any combination of the above and/or other foods.

Its NOT about "curing" autism, although outside of this group still talk in those terms. Its about functioning at the highest level you, as your unique self, can. Ouinon has become a strong advocate in this area, and she has done her homework, and I remember some of her earlier posts when she was testing on herself. None of this has ever changed who she is, it just makes her healthier. Why NOT be healthier?

Eventually the distinctions will creep out into the general population, and people will realize they may not have to go the full CFGF route to make positive changes. And it is only a certain percentage that can benefit. But what I've loved about this community is how we've got high functioning individuals testing on themselves and able to report back with all the whys and hows; it will, long run, help figure out the "why" on the CFGF working for some, and enable affected individuals to target more accurately.


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14 Aug 2009, 2:17 pm

Can't answer. I was on both a GF and CF diet for a few weeks, but put back milk because it didn't affect results. The gluten free diet cured my stomach problems I've had since I was a child. No pseudoscience at all.



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14 Aug 2009, 2:20 pm

Callista wrote:
It's not going to do a thing to change your autism, but if you're lactose or gluten intolerant, it'll do wonders, autistic or not.

The diet itself is a logical thing--IF applied to actual food intolerance or allergy.

Applying it to autism is pseudoscience.



Actually, it isn't because I suspect at least gluten intollerance is much more common in autism than in the general population. Of course, if you are not sensitive to gluten, it won't do any good, but because this is more common in autism it is worth trying.



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14 Aug 2009, 2:26 pm

Callista wrote:
Autistic kids are no likelier than NT kids to have celiac, incidentally.


You are probably wrong about that. This sounds a lot like the retoric of autistic parent groups ("autism is only an isolated mental illness" type of thing). At least I know for sure that autistics have more stomach problems than NTs, and this in itself is a strong indicator that celiac disease might be more common in autism. At any rate, I don't buy "autistics are no more likely to have x or y" without real investigations, which are not at hand.



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14 Aug 2009, 4:21 pm

ouinon wrote:
A very large, recent, study by Eaton et al, showed that children of mothers with celiac disease are three times more likely to be autist than children of mothers without an auto-immune disease

This definitely sounds plausible. My mother has celiac disease and gave birth to two autistic children, one of whom also has celiac. She wasn't underweight when she was pregnant. Also I noticed during the WP meet in France, out of 8 of us there was one person with celiac, one with a family history of celiac and one who was gluten intolerant. If you took a random sample of 8 NTs there probably wouldn't be such a high incidence of gluten problems.

I think it's becoming clear that autism doesn't just affect the brain, but causes differences in other parts of the body, especially the digestive system. For example, Leaky Gut Syndrome seems to occur exclusively in autistics. There also seems to be a greater frequency of other autoimmune diseases - my brother suffers from diabetes, vitiligo (lack of pigmentation in the skin), alopecia (hair loss), and suspected ulcerative colitis or crohn's disease, as well as celiac and aspergers.



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15 Aug 2009, 8:40 am

*Quick back story on us - I am the mother of an almost 4 year old girl, Kaelyn, who has Autism. I am NOT trying to "cure" my daughter. I am working on finding NATURAL treatments that help her*

*sorry to qoute such a HUGE comment*

This is truly the most informative quote presented along side gf/cf that I have ever seen and in reading it, I see the reasons behind progress my daughter has made. We removed gluten in March of 08 and the results were drastic. We removed casein in December and the results were not nearly as remarkable, but physically, she did improve (firmer stools, her distended belly went down SOME, the dark circles under her eyes cleared up...) For us, it was the gluten removal that did wonders.
I have SEVERE digestive disorders myself, am finally seeing specialists for it and having my gallbladder removed. I will not be even faintly surprised if I find out I have Celiacs, though my PCP has yet to test me for it. I am banking on the specialist actually TRYING to help me.
As for my daughter, I cannot deny the gains she made on the gf diet. I am her harshest critic. A POSSIBLE gain is not a gain to me. It must be concrete.
Could you possibly link me to where you got all of these studies? I would love to do more research on it. I am an information junkie, especially in Autism.


ouinon wrote:
Reasons why people on the spectrum may be more likely than most people to find a gluten-free diet useful:

A very large, recent, study by Eaton et al, showed that children of mothers with celiac disease are three times more likely to be autist than children of mothers without an auto-immune disease, which suggests that gluten-intolerance, or sensitivity, may be more common among autists, indicating that a gf diet is more likely to be useful for someone on the spectrum than in the population at large.

And there are several studies which show that autists have higher levels of gliadin ( the offending bit of gluten ), and other anti-bodies, ( to various dietary proteins aswell as bacterial endotoxins/lipopoylysaccharides ), than the general population. A couple by Vojdani but here is another:

Quote:
Higher Plasma Concentration of Food-Specific Antibodies in Persons With Autistic Disorder in Comparison to Their Siblings

Vladimir Trajkovski Aleksandar Petlichkovski et al. Institute of Immunobiology and Human Genetics, Faculty of Medicine, University Ss. Kiril and Metodij, Skopje

Specific IgA, IgG, and IgE antibodies to food antigens in 35 participants with autistic disorder and 21 of their siblings in the Republic of Macedonia were examined. Statistically significant higher plasma concentration of IgA antibodies against alpha-lactalbumin, beta-lactoglobulin, casein, and gliadin were found in the children with autistic disorder.

Plasma concentrations of IgG antibodies against alpha-lactalbumin, beta-lactoglobulin, and casein in participants with autistic disorder were significantly higher. IgE-specific antibodies (alpha-lactalbumin, beta-lactoglobulin, casein, and gluten), as well as plasma concentration of total IgE, also were statistically significantly higher in the participants with autistic disorder. Gender differences were found for select IgA, IgG, and IgE (but not for total IgE) food-specific antibodies (kU/L) in the participants with autistic disorder and their siblings.
.


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

Quote:
The immunology of gluten sensitivity beyond the intestinal tract

Aristo Vojdani, Ph.D., M.T.1*; Thomas O’Bryan, D.C., C.C.N., D.A.C.B.N.2

Gluten sensitivity, celiac disease (CD) and gluten-sensitive enteropathy are terms that have been used synonymously to refer to a disease process affecting the small bowel and characterized by gastrointestinal symptoms and malabsorption. However, since 1966 scientific evidence has been accumulated demonstrating that gluten sensitivity can exist even in the absence of enteropathy. For example, patients with dermatitis herpetiformis and presentation of blistering skin do not have any gastrointestinal symptoms but have elevated gliadin antibody in the blood which improves on a gluten-free diet.

Additionally, associations of CD with other organs such as the central and peripheral nervous systems also go as far back as 1966. However, until recently, this phenomenon of immune reaction against neural tissue, in particular the cerebellum, was attributed to vitamin deficiencies and not to immunological pathogenesis. During the past five years, based on overwhelming evidence of immune pathogenesis involving organs other than gut and skin, many scientists have begun to re-evaluate the notion that gluten sensitivity is solely a disease of the gut.

Other organs suspected of involvement include: the joint, the heart, thyroid, bone, the brain cerebellum and the neuronal synapsins which are summarized below.

Although it is believed that the prevalence of CD is one in one hundred, for every symptomatic patient with CD there are eight patients with CD with no GI symptom. In addition 10% of the apparently healthy population have significant elevation in gliadin antibody but no obvious classic disease manifestations. In our laboratory, when the blood of these individuals is tested against different tissue antigens (joint, myosin, endothelial cell, bone antigens, myelin basic protein, cerebellar and synapsin peptides) more than 90% of them exhibit elevation in IgG, IgM and IgA antibodies against one or all these organ-specific antigens.
.


If you hadn't already guessed, I am on a gf diet. And it makes a huge difference to my mental health; it has eliminated depression, hypomania, headaches, frequent infections, aswell as sleep problems, and brain-fog/confusion. In fact it has made so much difference to me, and I have read so much about it, and other links between diet and mental health, that I am making a presentation on the subject, ( connections between diet and mental health ), at Autscape in London next week! :D :D :D

.



ouinon
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15 Aug 2009, 9:59 am

KaeLainne wrote:
Could you possibly link me to where you got all of these studies? I would love to do more research on it. I am an information junkie, especially in Autism.

A few links and refs! :wink:

A. CELIAC DISEASE/ GLUTEN SENSITIVITY:

1 ) Celiac.com at http://www.celiac.com/ … particular pages of interest:

http://www.celiac.com/categories/Celiac ... -Disorders

http://www.celiac.com/articles/21669/1/ ... Page1.html

2 ) Huge collection of articles, research and links at “The Gluten File”:

http://jccglutenfree.googlepages.com/ and also on the brilliant info-packed forum connected to it

:) "Gluten Free and Beyond" at: http://glutenfreeandbeyond.org/forums/index.php

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

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

4 ) Other sites/articles about celiac disease/gluten intolerance, gf-diets, etc:

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

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

b. “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

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

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


B. FOOD INTOLERANCE/SENSITIVITY:

1 ) Food Can Make You Ill at: http://www.foodcanmakeyouill.co.uk/

And http://www.foodcanmakeyouill.co.uk/libr ... ories.html

2 ) The “Specific Carbohydrate Diet”

Chapter from Elaine Gottschall’s book “ Breaking the Vicious Cycle” at:

http://www.pecanbread.com/new/btvc1.html ( on autism and the Specific Carbohydrate Diet )


C. THE AUTISM ANGLE:

1 ) “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

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

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

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

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

4 ) 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

5 ) “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

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

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

7 ) “Autism; a Brain Disorder, or a Disorder Affecting the Brain”, by Martha Herbert at:

http://www.marthaherbert.com/Herbert_CN ... _final.pdf

8 ) “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 )

9 ) Impaired sulphation pathways in autists, and effect on amylase production, etc, at:

http://www.autismfile.com/papers/Rosema ... hation.asp

( ignore the brief Wakefield ref; she wrote the article before he was exposed, and her analysis does not depend on his results )


D. THE IMPACT OF PHYSICAL HEALTH ON MENTAL HEALTH:

1 ) “A Mind Under Siege” by Phyllida Brown at:

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

There are links to several brilliant papers about the impact of immune-system activity on mental health at the bottom of the page.

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

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

3 ) “Activation of the Inflammatory Response System in Autism”. Products of the IRS may induce social withdrawal, resistance to novelty, and sleep disturbances:

http://www.websciences.org/cftemplate/N ... D=20005614

And this paper, ( below ), which I only found two days ago, and had me jumping up and down with excitement, :lol: published in the Journal of Lipid Metabolism 2005, ( and cited in 56 papers so far ) suggests that a high-carbohydrate diet may be responsible for serious and widespread deregulation of lipid metabolism, which is known to be associated with a variety of neurological disorders and neuropsychological conditions, ranging from schizophrenia, bipolar disorder, through depression, alzheimers, cognitive impairment in the areas of attention, executive function and memory, to autism:

http://www.jlr.org/cgi/reprint/M400486-JLR200v1.pdf

Quote:
Lipid homeostasis and apolipoprotein E in the development and progression of Alzheimer disease
Roger M. Lane, MD* and Martin R. Farlow, MD. Publ. in Journal of Lipid Metabolism 2005

In addition, it has been proposed ( Henderson S. T. 2004 Med. Hypotheses ) that the inhibition of lipid metabolism by high carbohydrate diets may be the most detrimental aspect of modern diets. AD may be similar to obesity, coronary artery disease (CAD) and type II diabetes mellitus in being a consequence of the conflict between our Paleolithic genetic constitution and our current Neolithic diet.


Happy hunting. :D It's fascinating stuff!
.



Last edited by ouinon on 15 Aug 2009, 10:39 am, edited 3 times in total.